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Underactive thyroid and pregnancy

(322 Posts)
cumbria81 Fri 20-Nov-09 11:20:43

I was diagnosd with an underactive thyroid last year and have been taking thyroxine. I have never had any of the usual symptoms (I don't have a weight problem and rarely feel tired) so the diagnosis was a bit of a surprise.

However, I am now thinking about ttc and know that hypothyroidism can cause problems in pregnancy. I've been doing some googling (always dangerous!) and it's quite scary - miscarriage, birth defects etc.

Has anyone with an underactive thyroid been pregnant and what were your experiences?

many thanks!

Heated Fri 20-Nov-09 11:32:31

I've read that having an under-active thyroid can interfere with ttc but have fallen pg instantly each time so have no experience of that myself. Am expecting baby no 3, although very early days.

They will keep an eye on your thyroid levels throughout pg and usually up the amount of thyroxine during pg. They will also scan you probably at least twice more than the routine scans to keep an eye on the growth of your baby. Both my two were a sensible weight and in fine fettle.

One other thing to bear in mind is that having an under-active thyroid can apparently interfere with milk production if you're intending to bf - something I only heard about after having my two. Don't know a lot about it - nor do the professionals either - so am off to investigate.

Good luck with ttc.

evitas Fri 20-Nov-09 11:57:56

Hi Cumbria81,

I had hyperthyroidism a few years ago. Although the values were ok on my last blood tests, my mw booked me an appointment at the hospital so I can talk and be seen by a obstetrician. I guess that as long as they monitor your values and they check baby on a more regular basis everything should be fine.

Good luck. All the best

memorylapse Fri 20-Nov-09 14:36:33

I have hypothyroidism and was closely monitored with my DD2, the real danger with hypothyroid is that if your TSH is not kept suppressed..there is a risk that the baby may be born with underactive thyroid too..but you will be well monitored in pregnancy and my TSH was checked monthly..Im now 16 weeks pregnant and my thyroid is checked monthly

EldonAve Fri 20-Nov-09 14:39:09

basically as soon as you find out you are pg your dose should go up 50 mcg

I will try and find the nhs clinical guidance link for you later

EldonAve Fri 20-Nov-09 14:54:45
Shauri Fri 20-Nov-09 21:05:38

I was diagnosed last year (already have 2 DC before diagnosis) Since I have been taking thyroxine I have managed to get pregnant 3 times (2 miscarriages due to a swift rise in TSH levels at week 5/6) I would recommend speaking to your Dr before getting pregnant and get them to check all your bloods - underactive thyroid can also leave you with an iron deficiency.

Not all bad news, I am currently pregnant (11 weeks) and have been having weekly/fortnightly blood tests since i found out at 3.5 weeks after LMP ( I tested early on DRs advice) The endocronologist suggested the ideal TSH level was around 1 and shouldn't go above 2 in pregnancy.

HTH

ArthurPewty Fri 20-Nov-09 21:15:48

Underactive for the last 9 years. Pregnant in 2003 and 2008. Fell pregnant within one month the first time, and ONE TRY the second time (!!!) ...

Get your thyroid results FT4 and TSH done every 2-4 weeks and keep on top of it. There are some rapid increases needed in the first 18 weeks or so, and you may end up needing 50-100mcg more than you did previously.

My TSH is < 0.01 and is always there, because i take T3 as well as T4. However, i agree with the above statement re TSH. If it gets > 2, then your thyroid is failing to compensate for hte increased oestrogen and SHBG in pregnancy / your intake is too low.

chubbychipmonk Fri 20-Nov-09 22:05:23

Ive been on thyroxine for an underactive thyroid since I was 16 (am now 31). Take 100mcg thyroxine daily and am 35 weeks.
No problem getting pregnant, have to get my blood taken every 4 weeks to monitor my thyroid levels, thyroxine was increased to 125mcg at start of pregnancy but now back down to 100mcg.
As long as you get your levels checked regularly throughout your pregnancy you should be fine smile

cumbria81 Sat 21-Nov-09 08:44:13

Thanks for all your responses. I already take 100 mg so I suppose that would have to increase if I fell pregnant.

I think I have a tendency to fear the worst and am really not sure I could handle a miscarriage especially in late pregnancy. But I know there is no point thinking "what if".

EldonAve Sat 21-Nov-09 10:25:21

it is worth getting it checked when you start ttc as you want TSH under 2

brightonpebble Sat 21-Nov-09 10:58:24

Heated -

Interesting to hear there may be a link between underactive thyroid & milk production. I was unable to produce enough milk for either of my DCs. The first time I put it down to a difficult delivery & stress, the second time everything was ideal and had a Doula/BF expert in the house every day, did everything possible, and still couldnt make it work. No one ever had any explanation for it, maybe the thyroid was a factor.

MumNWLondon Sat 21-Nov-09 19:22:03

Hi Cumbria - get thyroid checked whilst TTC, it should be between 0.5 and 2, ideally around 1. Then you need it checked esp at start of pregnancy every month, you will need dosage changed if TSH creeps above 2. I was on 100mcg, then up to 125mcg (as soon as I conceived) now take 125mcg x 3 days a week and 150mcg the other 4 days as TSH crept up to 2.28, but now back to 1.14.

ArthurPewty Sat 21-Nov-09 20:58:47

FT4 and FT3 are SOOOOOOOOOOOOOOOOOOOOOO much more important than TSH.

TSH isnt even a thyroid hormone, guys!! TSH - Thyroid Stimulating Hormone. Released by the pituitary, it tells the thyroid to work harder to release the (2 most important) real thyroid hormones, Thyroxine and Liothyronine.

TSH changes by approx 3 points over the course of a day - is pulsatile, diurnal. Might be 1.14 at 3pm, but could be as high as 4.14 at 2am!! Highest at approx 2am, lowest at approx 2pm.

TSH varies minute by minute, in reaction to what is going on in your life, your body. It isnt a steady level in your blood. Medications affect it - aspirin lowers it. Steroids lower it. Sleep deprivation raises it. Stress lowers it. Exercise raises it. ETC.

TSH is not a 100% reliable means to test everyone's thyroid function because it depends on a feedback loop, which can be faulty in some people (myself included), called secondary hypothyroidism. Many people fall through the TSH net, if only TSH is used to diagnose/treat.

My levels were TSH 1.61, but FT3 and FT4 under range, when i was diagnosed. !!!

FT4 can affect the baby's intelligence. Lowered FT4, lower IQ. Also possible link to autism. Low FT4 after birth can lead to inadequate milk production. It requires a higher metabolism to produce milk, and an underactive thyroid causes a lower metabolism.

Please keep a very close eye on FT4, and pay less attention to TSH. And truly, mostly ignore your consultants/GPs/endocrinologists.

Our local FT4 range is 12-22, and my consultant freaked out when my FT4 dropped down to 13 towards the end of my pregnancy with DD1. My TSH is and was and always has been < 0.01 since i began taking medication, so it is not worth looking at. FT4 needs to be as high as possible within range, to ensure your baby is not suffering, until his/her thyroid can produce its own hormones.

Most of my information comes from 9 years of dealing with this disease, Thyroid Manager, and journal abstracts at pubmed. I can link if i need to, but i probably don't.

silki Wed 03-Mar-10 22:29:45

i didnt know that FT4 is so important. I have 2 miscarriage (i lost it at 6 weeks for both). Normal range for FT4 is 0.8 - 2.0 . For both my miscarriage, my FT4 is 0.86 and 0.96 . Although the value is within range, its still on the low side. Could this be causing the miscarriage? My TSH is less then 2. My gyn is rulling out that my thyroid is causing the problem. Pls help.

santabringmeababy Thu 04-Mar-10 08:47:32

This is a really interesting thread and funnily enough I was just about to start a new one on the same subject.

My thyroid has been 'playing up' for nearly 15 years, basically swinging between overactive (never enough to require treatment) and underactive.

Eventually last year my GP tested for antibodies and found i have a very high amount which suggests I have hashimotos disease, basically where my own body is slowly killing off my thyroid.

Am currently pregnant with DC 2 (14 weeks).
Fell pregnant with this one and my DS after one try blush so it doesnt seem top have affected my fertility.

On the flip side had a very long birth with DS and my labour basically 'stopped' at 8cm for no apparent reason. having read the recent research it seems that even mild hypothyrpoidism can affect the progress of labour which is interesting. I also failed to Bf my DS despite all the 'help' and 6 weeks of heartache.

Anyway, saw the endocrinologist and obstetrician yesterday and dont need my dose increased. The endocrinologist basically said that as long as the lack of thyoxine is properly corrected there should be no risk to the baby. Not sure what my last T4 was (one a few weeks before was 14.9) but last TSH was 1.6 and he seemed happy with that.

I will be having some extra growth scans at 28, 32 and 36 weeks and weekly monitoring of babys heartbeat. Only need my Thyroid tested every eight weeks according to the Doctor but as i am only on a low dose and I seems to have BETTER levels of T4 and lower TSH since pregnancy (bizarrely)so I imagine they are not concerned.

santabringmeababy Thu 04-Mar-10 08:50:58

Cumbria 81, meant to say that having an underactive thryoid doesnt in itself lead to adverse outcomes, the most dangerous situation is having an UNDIAGNOSED underactive thryoid which of course can cause problems, but as long as you have adequate replacement therapy everything should be fine!! wink

MumNWLondon Thu 04-Mar-10 11:10:38

Risks are with undiagnosed / untreated unactive thyroid, not with one that is being monitored. I also have hashimotos.

Problem is both TSH and T4 tend to fluctuate - TSH fluctuates during course of day so best to get your blood test done first thing each morning (or at least at same time of each day). My T4 also fluctuates up and down - between 14 and 20 seems to be random.... so for me TSH is more stable (always get blood tested first thing around 9am) - if I had my dose adjusted when my T4 was slightly low I'd be over overreplaced. It just seems to correct itself.

I have beeen advised 4 weekly blood tests from 5 to 25 weeks. Highest risk time is first trimester. If all normal and stable at 25 weeks then can have less frequent checks after that point - although I am continuing with the blood tests as GP is happy for me to do so - esp as I want to make sure its all at the right levels for the birth. I had one at 30 weeks and will have one final one at 36 weeks.

The reason for the 4 weekly checks is that esp in early pregnancy things can move quickly even on a low dose eg in my first pregnancy on 50mcg TSH was 0.87 at 4 weeks and then 13.8 and 8 weeks.

Santa: T4 of 14.9 is towards the low end of normal so you might want to push for checks more often - the guidance I have read is that during pregnancy it should be above 16.

I have never been offered extra growth scans though - endo has always said that provided thyroid under control no other risk factors.

Silki I am sorry for your losses - i have been advised to increase dose by 25mcg per day from day I get BFP to make sure enough extra thyroxine in early pregnancy - I have seen this since on official NHS guidance - perhaps worth discussing with doctors just incase?

WhiteRoses Thu 04-Mar-10 12:54:35

Hi,

Just thought I'd add my experience, although I'm no expert. But when I was thinking about TTC, I wanted all the information I could get my hands on!

Firstly, I was diagnosed with hypothyroidism over seventeen years ago. (I was only seven, so very young!) I've been on thyroxin ever since, and the dose has been stable for as long as I remember - certainly over ten years. However, although my thyroid was well controlled, I did have very irregular (anything between 19 and 49 day!) periods, which was a worry.

Before starting to TTC, like you, I read a lot, and scared myself senseless! Fortunately though, I fell pregnant in my third cycle. Spent an absolute fortune on HPTs, because I wanted to make sure I found out asap, so that I could get to the doctor asap! confused

When I got my BFP, I was in two minds about whether or not to up my dose of thyroxin before seeing the doctor. (Most of what I read seemed to be suggesting that you take an extra 50% of your regular dose, asap.) However, I held off and saw the doctor within a couple of days. He was great. Took blood and sent it off to be tested urgently. However, he did advise me, to my surprise, to stay on the dose of thyroxin that I was on until the results were back. His reasoning was that the effects of a new dose don't kick in for 6-8wks, and waiting 48hrs for the results wasn't long in comparison. And there was a chance that I mightn't need my dose upped, in which case I'd be messing with an already stable dose for no reason. Sounded quite logical to me.

Anyway, when the results came back (within 36hrs), he phoned me. My TS3 and TS4 levels were alright, but TSH was way off, so I did need a higher dose. I was put on that immediately, and advised to have my levels tested again 6wks later. That was Tuesday, so I won't get the results now until later this afternoon.

Now for the pregnancy itself... I've been told I did well to get pregnant as quickly as I did (three months). But then that's not bad even if you haven't got an underactive thyroid. I have felt absolutely exhausted since getting pregnant (don't thinkk I mentioned I'm currently 12wks). Tiredness is a symptom of both pregnancy and hypothyroidism, so I'm not sure of the exact cause of mine - maybe it was a bit of both? Aside from that, I've also hadd very severe morning sickness. (All day sickness.) I've been hospitalised twice in order to be treated for dehydration. Apparently (unfortunately) this is very common in hypothyroid mums-to-be. But hopefully it'll ease up soon, as the placenta takes over and as my thyroxin dose stabilises again.

The other impact of hypothyroidism is that I have to have consultant-led care, rather than midwife-led. To be honest though, I'm fine with that. It's nice to think I'm in the safest of hands.

Risk of miscarriage was certainly higher because of my thyroid, but, now that I've had my 12wk scan, my consultant has said that he's not overly concerned about me. Yes, my risk is still higher than other women's, but I don't drink, don't smoke, am a normal weight and am young (24), so all of these factors lower my risk and overall, I'm not THAT much more likely to miscarry any more than any other woman would be.

So I don't know your situation but maybe cutting out alcohol, cigarettes and eating healthily would be a good idea? (If you haven't already done this!)

I had read about potential trouble with breastfeeding, and questioned my consultant about it on Tuesday, but he seemed to think it was best not to worry too soon. That, up to now, I've had no problems (aside from sickness, which is bad for me but fine for the baby). He assured my that my thyroid would be well monitored throughout my pregnancy. He said I shouldn't be concerned if I end up on three or more times my original dose by the end. But that once the baby's born, I'll need less again, and that'll all be monitored. He reckoned that with careful control, there's no reason I won't be able to try to breastfeed.

This is a LONG post! Hope it was interesting for you though, and not just too much information! confused

Good luck though!

WhiteRoses Thu 04-Mar-10 13:03:57

Also, Cumbria, when TTC, I found this thread an invaluable source of support... All the women on it are TTC their first babies, and it's great to be able to ask questions and obsess together! There's also a "graduates" thread, for those of us who are currently pregnant, and there are plans for another thread, once we all start having our babies. So it's nice to feel you're going through it together. There are new people joining all the time too, so no need to be shy. You'll be made more than welcome if you feel like dropping in.

silki Thu 04-Mar-10 13:13:30

MumNWLondon: Thanks for your great advice. I have hyperthyrodism and was treated with antithyroid medicine. I stop medication when my thyroid level reach the normal range.

However, it looks like my level is so low and it could be hypothyrodism. I dun understand why my gyn is not acknowledging this. I will discuss with her again whether i should take thyroxine as soon as i get pregnant again.

I also have elevated thyroid peroxidase antibody (TPO) = 93, I'm not sure whether this can cause miscarriage?

MumNWLondon Thu 04-Mar-10 13:26:43

Whiterose - congratutions on your pregnancy.

Although I had consultant care in my first pregnancy by my 2nd one (and this one) I decided to opt for shared care (ie GP and midwife) just because I didn't want to be labelled as high risk and because consultant appointments in my hospital involve junior doctors and lots of waiting- its a personal choice and certainly in a first pregnancy very sensible to have consultant care. I did get transferred out of consultant care at 28 weeks in first pregnancy as wanted to use the MLU for birth and this wasn't available to women having consultant led care.

As you are being monitored and have passed 12 weeks I would have thought risks were pretty similar to everyone elses.

On the point about increased dose - with me on my first pregnancy my TSH and T4 were both totally normal at 4.5 weeks so no increase to the dose was suggested. But by 8 weeks when it was first checked in at the endo clinic as part of the consultant lead care in the hospital TSH was up to around 14, and it took 2 dose changes (effectly dose doubled from 50mcg to 100mcg and then up to 150mcg) it took until 20 weeks until it was under control again (ie TSH around 1 - after 6 weeks (on 100mcg) ie at 14 weels it was still around 6).

Interestly in 2nd pregnancy increased dose on day of BFP and didn't need any more adjustments right to end. This time I did need another small adjustment.

The point about the 6 weeks its not quite right - the extra thyroxine is effective in the body immediately but it can take up to 6 weeks for your TSH to stabilise after a dose change. I have found though for me it only takes around 2-3 weeks.

Anyway my issue I think was that I was tested too early initially - only day after BFP - I suspect had I been tested a week or so later the TSH would have started to rise already and my dose would have been adjusted sooner. Anyway my DD is healthy so I guess it doesn't matter.

When you say doctor is that GP or endo? I have found that GPs are not very knowledgeable about pregnancy and hypothyroidism - eg when I ask for increased dose at 5 weeks - GP wanted to test blood first - but luckily I could refer her to letter from endo saying I needed it immediately (letter is on my notes written after first pregnancy), plus when my TSH hit 2.28 at 12 weeks GP said TSH and dose was ok but I asked endo as I knew it shouldn't go above 2 and he increased it.

After my first pregnancy the consultant said that because of what had happened in any subsequent pregnancy to increase dose immediately because of what had happened first time round.

Anyway other than the thyroid tests both pregnancies with DD and DS uneventful, both births straightforward (esp DS's) and both breastfeed well. I was tested post-natally at 6 weeks and cut dose after birth.

Interest point about the morning sickness - mine was much worse in my DD pregnancy when my TSH was a little high - hardly had any this pregnancy (DS2) or with DS when thyroid more under control BUT that might be for other reasons eg girl pregnancy vs boy pregnancy or otherwise?

ANyway good luck and I hope your blood tests results are good - if your TSH is above 2 and GP says its ok insist on seeing specialist - and if its above 1.75 insist on test again in another 4 weeks.

Sorry for ramble hope its helpful.

Daynee Thu 04-Mar-10 13:47:35

Hey all - Just thought I'd add my experience here. I have hypothyroidism. I had 4 mc's, one of which I know for sure was a chromosomal issue. The others I don't know. At the time, my level was high because I wasn't on meds but now I'm on levothyroxine, and my doc advised me to take 2 every other day, so essentially I'm taking 50% more. Seems to be doing the trick...

I haven't heard of this being a major issue in abnormalities except I have heard that babies might suffer from intellectual development issues (learning disability) if your levels are too high...

lovechoc Thu 04-Mar-10 14:15:01

I've had hashimoto's, got diagnosed around 5 years ago now. I take 25mcg thyroxine daily and haven't found it awfully difficult to conceive although my periods have always been irregular and this hasn't helped it happen quickly like other couples.

I've had one trouble-free pg in 2006/07 and currently pg with no2 and so far no problems with the baby or myself.

I think it depends how severe your hypothyroidism is as to how the pregnancy goes. My form is mild just now but have been told I will go completely underactive eventually.

Oh, I had a MC last year, but that may be unrelated to my health problems. Just thought I'd add that in though.

piesey Thu 04-Mar-10 14:18:26

Hi there

I have hypothyrodism diagonsed about 18 months ago (I was very tired but no weight gain or other symptoms) and since then have been on a very low dose of levothyroxine (25mcg).

I'm now 6 weeks pregnant (my first pregnancy) and just been to the doctors. She didn't seem overly concerned about my thyroid and I'm going to get my bloods done next week (although she said there was no rush). My bloods we last done in November and I'm slap bang in the middle of the scale so she said she's happy that I'm probably still fine so hasn't changed my dose. I'm pretty tired at the moment but think this is the pregnancy rather then my thyroid. also not been offered any scans/test other than the usual.

She didn't mention about an increased risk on MC or other problems but now I'm a bit worried about this...

lovechoc Thu 04-Mar-10 14:21:57

Agree with another poster further up the thread that the labour I had was VERY long and drawn-out first time. It went on and on and on and I personally think it is related to my thyroid function. It's affecting the whole body afterall.

I did manage to breastfeed without any difficulties for 7 months, but that's just down to luck nothing else.

good luck to those ttc just now with hypothyroidism. It will happen!

MumNWLondon Thu 04-Mar-10 14:27:39

Hi Piesey - make sure when the bloods are done the results are either seen you you or by a specialist - if the TSH is above 2 or the T4 lower than 16 worth pushing to see an endocrinologist to discuss a change of dose.

Normal TSH (ie if you are not pregnant) is up to around 4.5 and normal T4 is I think above 12, so if you are in the normal range your GP might not register that its a problem, but low-borderline results not ideal in early pregnancy.

Also you might have seen earlier posts - best to get blood tests done as early in morning as possible as TSH falls over the course of the day.

Yes hard to say whether tiredness is pregnancy or thyroid - the difference I think is that thyroid tiredness hits you all day from the minute you wake up, pregnancy tiredness worst in afternoon / evening. Also other thyroid symptoms like cold hands/feet - and tender thyroid gland?

lovechoc Thu 04-Mar-10 14:31:47

I have to admit I'm tired all the time, but I know what you mean, it's hard to distinguish when you're pregnant. Most GPs or MWs will just say 'oh it's normal to be tired when you're pregnant' so you aren't ever taken seriously anyway because no one can tell the difference.

piesey Thu 04-Mar-10 14:45:12

Yes I am tired all day but it'ds definitely worse in teh afternoon - it also feels a bit differen to how I felt when I was diagnosed.

Thank you for the advice - I will get my bloods done asap. I hope that it'll be fine and my mind will be put at rest.

symone Fri 05-Mar-10 09:18:02

I have an underactive thyroid and am 8 weeks pregnant. I have been told as long as I keep taking my thyroxin (which was increased by 25mg to 150mg immediately I told dr I was pregnant) then everything should be ok and I will have regular blood tests to check the level is ok throughout.

My experience of pregnancy so far, speaking as someone who always fears the worst is that there are approximately half a dozen things a day that you can freak yourself out with if you are so inclined. The only answer is to be really strict with yourself and not even go there, which I am finding hard so i understand what you are saying but I don't think the thyroid thing is a huge concern to the drs anyway. You have to put your trust in what they say really.

I hope this has given you a little bit of reassurance...my only other advice is DON'T GOOGLE THINGS. If you are a bit of an anxious person it does nothing but provide excellent fuel for it. Take care and good luck x

mamaduchess Tue 06-Apr-10 11:58:18

I've had an underactive thyroid for about 6 years now.... I have an 18 month old son and had no problems with that pregnancy.

I'm pregnant again (9 weeks) and have already had my bloods checked and my thyroid levels are fine so far.

Both times I fell pregnant very quickly (first month first time round and second month second time round!) so I don't think my thyroid issues have had any negative effect on ability to conceive - and I hope that reassures some of you!

However, both pregnancies I've had pretty horrific morning sickness for the first 12 weeks, in fact this time round it has been worse than ever.

I read online that pregnancy hormones are very similar to the thyroxine medication, so I started to wonder if it was in fact my thyroxine medication that was making me feel so very very sick by effectively doubling the pesky pregnancy hormones flying around my body... It certainly felt that way! So I started taking my thyroxine at night so as not to interfere with my ante-natal vitamins and so that I could hopefully sleep through the wretched sickness. SO FAR SO GOOD, I'm feeling SO much better ever since I made this switch so I highly recommend this approach if morning sickness is getting to you.

I am convinced that my very important thyroxine meds were in some way making me feel so sick...... of course I would NEVER suggest skipping them, they are vital to your own and your babies health, but by taking them before bedtime I have improved the nausea hugely!

Oh, and the good news is, that last time the sickness stopped bang on 12 weeks - and then I glowed (partly because I was feeling so much better). So hurry up 12 weeks....

Good Luck everyone.....

rachelle79 Tue 20-Jul-10 22:41:21

Ive just miscarried at 12 weeks and wasnt aware, until the lady doing the scan mentioned, that an underactive thyroid was a common attribute. Im really cross now because i saw my doctor before trying to conceive to check that all would be ok with my condition and medication (50mcg). at no point during the 12 weeks were my levels checked or my condition given any concern, even though i brought it up at every appoinment and on every form.

MumNWLondon Tue 20-Jul-10 22:58:52

Rachelle, sorry to hear about your loss. Your doctor was not well informed. According to my consultant, your thyroid levels should be checked when TTC, optimum is for TSH between 1 and 2. Thyroid levels should then again be checked monthly during pregnancy, although if stable at 28 weeks mayb be no need for further checks.

Further due to my past history I have been advised to immediately increase my dose by 25mcg on getting a BFP. In my first pregnancy taking 50mcg TSH was 0.89 on week I got BFP and then 13.8 just three weeks later. I went to GP and asked for thyroid test as I was tired, she said it was normal pregnancy and I'd only just had test but luckily I pushed for another test. She said "I didn't know it could move that fast"

rachelle79 Tue 20-Jul-10 23:10:16

Thank you. i will definately take this info to my doctor because i am going to TTC again asap. I felt so ill and tired throughtout the 12 weeks but i didnt even consider it being my thyroid. I was literally sleeping at any opportunity i got.

EmmieA Wed 21-Jul-10 08:49:51

I've been hypo for years. When I was ttc I had my bloods done every couple of months to monitor levels. After 3 months of not getting pregnant I had a chat with doc and because I was always at lowest of the normal range no harm in upping by 25mg, got pregnant straight away. Am now monitoried every month with bloods. As long as you are monitored every month then there shouldn't be any adverse affects, it is only if it is left undiagnosed you need to be concerned. One thing I would say is be your own doctor, if the NHS maternity systems dont kick in then take yourself to docs for bloods and check results (someone forgot to ring me for 6 weeks to say my TSH wasn't right. Akways ask for the figures too so you know how you doing. x

MumNWLondon Wed 21-Jul-10 09:54:36

Yes, I agree with Emmie, always actually ask for the results don't let them just say "its normal" because "normal" is a TSH up to 4.5 which is too high if you are pregnant or TTC. In my last pregnancy my dose was increased by consultant when my TSH crept above 2 even though GP said "its normal and fine".

re: tiredness IME - pregnancy tiredness - you feel ok all morning, a bit tired after lunch and exhausted in the evening.

thyroid tiredness - you feel totally and utterly exhausted from the minute you get up until you go to bed.

hattyyellow Wed 21-Jul-10 09:59:18

I have Hashimotos disease which was undiagnosed during my second pregnancy. They think now that it started following my first pregnancy.

My second pregnancy went to full term and the result is now a happy and healthy 19 month old.

I know from friends who had diagnosed underactive thyroids during pregnancy that they were watched carefully by doctors and their thyroxine doses often increased.

Good luck!

ladyjadey Wed 21-Jul-10 11:10:33

I am hypothyroid. It took me 4 and a half years of TTC for my DD. I had my TF checked during pregnancy as although I was not diagnosed at the time my sister had had a thyroidectomy during her 1st pg for being dangerously overactive. My results came back normal and that was that.....or so I thought.

When DD was about a year old I had some bloods done at work (I am a nurse) and the doc who took them requested TFT's, which I knew nothing about until they came back deranged. My hair had been falling out since I had DD and I waqs permanently shattered but had no other symptoms, I just put it down to being a new mum.

I am currently 35 weeks pg, this time round I concieved unexpectedly 2 weeks after stopping the pill (which was totally unintentional, I went away and forgot to take new pack). I am currently under shared care, have not had any extra scans, have my bloods done 4 weekly and have had thyroxine increased twice. Interestingly, I really struggled to BF last time due to lack of supply, will be curious to see how it pans out now I'm on thyroxine.

Last saw consulatant yesterday, bloods were fine, have been told to just see CMW now until birth. I have been told to drop dose of thyroxine immediately post birth and have bloods rechecked 6 weeks later. After reading this thread I may just reconsider the immediate drop to pre-preg dose and have a word with gp/ consultant in hospital should I have any probs BF this time.

Hindsight is an amazing thing......I never thought about the possible relationship between being hypo and struggling to concieve last time, nor did I relate it to probs BF. In this pg I was devastatingly exhausted for first 16 weeks, all day, every day, again I put it down to pg and not thyroid, but looking back that was prob when I had my dose increased. No morning sickness at all in either pg.

I feel a bit bloody stupid actually looking back, after all I am a nurse! Should have done my research! Never mind!

hattyyellow Wed 21-Jul-10 11:16:25

Meant also to say that it also took me a lot longer to concieve second time around, after my thyroid had gone underactive.

First time around it happened within a few months, second time it took a year. I know there are other factors that can influence conception but I did think it was relevant.

rachelle79 Wed 21-Jul-10 12:47:04

so if i see the doctor asap and explain im trying to conceive again, i must insist he checks my levels. Then see him again once i get a positive pregnancy result. Then how often? And when should i be referred to a consultant? Sorry, so many questions but i want to get it right this time

hattyyellow Wed 21-Jul-10 14:33:52

It's really complicated - I still get confused a year on from diagnosis! Best thing to do is to insist on a print out of your results and then come on here or google them. Some GP's won't treat you with border line results but that doesn't mean you don't need treatment..sceptics say it's because you get all your presc. free once you go on thryoxine as you are classed as having a chronic longterm condition - ie you have to take thyroxine for the rest of your life.

My results were borderline, but it wasn't until they tested for antibodies and I got a sympathetic GP that they agreed to treat me.

I found within 2 weeks my weight had dropped from 72 to 65 kg, my skin cleared up completely from being quite congested and prone to breakouts and my energy levels soared - plus I concieved DD3 so obviously they did need to treat me!

iggi999 Wed 21-Jul-10 15:01:52

I am 5+6 preg and had dose increased by 25mg at 4 weeks, to 200. Am now wondering whether I should take a bit more, as that was 2 weeks ago.. Have had one mc at 5 weeks, had not increased dose that time.

Karstan Wed 21-Jul-10 15:16:06

This is all really interesting useful info. Ttc at the moment and I'm hypothyroid, had bloods done and that was all ok but forgot to ask whether I had to get to docs ASAP after getting a bfp. Looking at this info it seems the answer is yes, so will make sure I go sit in morning surgery rather than booking an appointment (2 week wait) if I get a bfp.

MumNWLondon Wed 21-Jul-10 17:51:34

rachelle - when you start to ttc get levels checked. if TSH is towards top of range (above 2) or T4 towards bottom of range (under 16) then discuss increasing dose with GP and get checked again 6 weeks later.

when you get BFP go to GP and either:
a) discuss immediately increasing dose by 25mcg followed by blood test 5-6 weeks later
b) or no adjustment to dose BUT blood test 3-4 weeks later with a few to increasing dose then if TSH is high

Either way then get monthly tests.

BTW always best to get bloods done first thing in morning. ALso i always wait and take that days dose AFTER the test so it doesn't affect results. the reason for this is that TSH is generally lower in the afternoon so more change of a problem being picked up in the morning. taking the meds that morning should not affect tsh but might affect t4

ALSO NEVER EVER adjust your medication without discussing and agreeing with your doctor.

MumNWLondon Wed 21-Jul-10 17:58:56

Hattyyellow - my sister went to see my consultant after I was diagnosed as she was also always exhausted. Her levels were borderline so consultant said no need to treat, unless she was TTC (as being borderline, or even TSH towards upper end of normal range reduces fertility) but she was very annoyed as she felt so tired all the tine. So she went back a couple of months later and said she was TTC! Within 2 weeks of starting on the medication she felt great. And after her DD was born she has continued to take the medication.

If you are TTC ask for actual results not just if its "normal"

Ibizadreams Wed 21-Jul-10 19:36:06

After reading this thread I am shitting it. Didn't get levels checked til booking in at 13 weeks - they came back 16.4 T4 and 0.4 TSH.

I am supposed to see a consultant but won't get an appointment until 21 weeks - seems awfully late - also GP said it's up to the consultant to change dose?!

What should I do, do you think?

iggi999 Wed 21-Jul-10 20:48:14

How come my GP was able to tell me to instantly go up by 25mg?
I remember going with the NHS clinical guidance thing printed out to see her, ready for a fight! - but didn't need to.
Your TSH level seems pretty good though Ibiza isn't it - don't think you should get yourself worried, but I'd go to see a different GP at the practice.

tyler80 Wed 21-Jul-10 20:49:33

Ibizadreams From those figures it looks to me like you are slightly overmedicated rather than undermedicated. I'm pretty sure in pregnancy that they prefer to have you slightly over than slightly under so I don't think you have anything to panic about.

MumNWLondon Wed 21-Jul-10 21:01:45

Ibiza - levels are fine, and would not be changed at those levels, perhaps v slightly over medicated based on TSH but T4 just right (should be above 16).

My consultant did not up my dose until TSH was over 2 (it had been creeping up) - pre-pregnancy dose was 100mcg, after BFP was 125mcg and when it was increased it was only by 3 extra 25mcg tabs a week.

roxieroxie Wed 21-Jul-10 21:56:01

hi, im currently 12 weeks with my second, im taking 250mcg daily, this was my before preg. dose and i had no problems with my first. I know they say it can lead to low birth weight but my first was 9lb half ounce! I often forgot to take my daily tablets, as i never suffered any symptons so hope this hasnt affected my unborn

PlumBumMum Wed 21-Jul-10 22:21:21

marking this as want to read Leonie Delt info

My thyroid has been f**ked for 10 years, I have had 3 dcs, dd1 I know my thyroid was going down hill before I even had her but it wasn't picked up until after she was born,

ds & dd2 both fine, hospital kept close eye on me and sometimes more appointments than I would have liked, but were very good rining me to tell me when to increase thyroxine

Ibizadreams Thu 22-Jul-10 13:32:46

Thanks all, for the advice. I'll go back and talk to another GP.

mpops Thu 17-Mar-11 11:00:55

Hello, sorry for ressurecting an old thread but I need some advice. I'm in my 12 week today. Been on Thyroxine for 15 years and for the last 5-6 my dose has been 50mcg.

I found out I was pregnant on wk5 and went to the GP on wk7. He mumbled something about thyroid but not enough to get me to do blood tests. Had some blood tests at my MW booking in appointment (at wk10) and they asked loads of thyroid questions then - but I haven't heard anything since. And no-one has mentioned anything about upping my dose.

We had a scan at 10 weeks as well and it all seemed fine in terms of growth and heartbeat. But I'm really really worried now because my glands are doing funny things and I still haven't heard anything about my thyroxine dose from the blood tests and all I hear is "as soon as you are pregnant, the dose has to go up by 50mcg". That's double my dose! Do I just self-medicate and go for two pills a day?

I can't sleep for worrying about it. Does anyone have any advice please?

camdancer Thu 17-Mar-11 11:53:07

Have you had your TSH tested? What was the result? You should be being monitored by regular blood tests during your pregnancy. My consultant has said to keep my TSH below 1.5 while I'm pregnancy. So far, that has meant me going up from 125mcg to 150mcg.

If your GP and midwife aren't being helpful then you need to make a fuss. You need your TSH (and possibly T3 and T4) checked at least every trimester. You then need to follow up and get the results. Make a nuisance of yourself!

EldonAve Thu 17-Mar-11 11:58:58

print this out go back to your GP/midwife and demand treatment
you may only need a 25 mcg increase

# At diagnosis of pregnancy, immediately increase the levothyroxine dose and check TSH and FT4 levels while waiting for referral to a specialist:

* The dose should be increased usually by adding at least 25–50 micrograms levothyroxine; the size of the initial increase in dose will depend on the dose the woman is already taking and the TSH and FT4 concentrations. A 30–50% increase in dosage may be required. If there is any uncertainty about what dose to prescribe, seek immediate specialist advice so that there is no delay in the woman receiving an adequate dose of levothyroxine.
* Check TSH and FT4 levels every 4 weeks until stabilized, aiming for a TSH concentration in the low-normal range (0.4–2.0 mU/L) and an FT4 concentration in the upper reference range.

mpops Thu 17-Mar-11 11:59:02

Thanks for your reply!

I had bloods taken at my booking-in appointment (Monday before last) and they said they'd test my TSH then. Haven't had the results from that yet. But as I'm in week 12 now and that was the only blood test I've had so far, I'm panicking. I don't even know who to call as the tests were done at the hospital and I still haven't met the midwife who will be looking after me. I've got an appointment with the Obstetrician at week 16, presumably because of the thyroid but again, no contact.

Right.I'd better spring into action!

freelancegirl Thu 17-Mar-11 14:44:58

Nice to see so many of us with thyroid probs who have not had any issues with conceiving. I was always really worried it would be hard to conceive, have been on thyroxine since I was 22 and am now 36. But as long as your thyroid is 'normal' you should be fine. It took me 3 months of not using contraception and not really paying much attention to 'fertile days! That's despite having a cycle that can vary between 28 days and 45 but is usually around 32-35.

11.2 weeks so far, scan on Monday. So I was worried that I couldn't conceive and am now just worried about scan! But conception wasn't a problem.

Good luck! Make sure you know the discrepancy between what your doc might see as 'normal' levels and what any informed thyroid patient sees as normal. Charity Thyroid UK is good for info on this.

Fascinating thread, I wonder if anyone could tell me what they think of my results - I'm concerned.

History:
Lost my first baby at 20 weeks in October. TSH measured as part of the many bloods on the day I delivered her, it was 6.7. GP insisted that this was only a touch out of the normal range which they quoted as up to 5.5 so they wouldn't medicate. As I was no longer pregnant I let it go, too much else going on right then.

A month after the pregnancy loss they tested again and found:
TSH 2.3, FT4 16.1, FT3 5.1

I then conceived got a BFP in early December so bloods re done at 5-6 weeks pregnant: TSH 3.6

Still no treatment.

I'm under consultant care due to my loss last year and saw him last week for 16 week scan and he was concerned that my thyroid hadn't been checked again. So they tested it: TSH 4.6, FT4 13.9

I got the results today from the GP receptionist who said that the doctor had noted "normal, no action needed" next to the results. I don't agree so am going to try and get an appointment tomorrow.

Is it right that I quote the TSH 0.4-2.0, and FT4 16+ as the pregnancy ranges? Given that they've never really diagnosed me properly, just fobbed me off three times? Would I be sensible to request a trial of thyroxine?

I'm really scared to see my TSH levels climbing and my FT4 falling. The levels are getting close to what they were when I lost my first baby. She was 20 weeks and I'm 17+4 now. Yet they don't seem at all bothered!

Thanks

EldonAve Thu 17-Mar-11 17:15:48

I recommend you ask to see an endocrinologist asap
In preg tsh should ideally be under 2
Good luck

mpops Thu 17-Mar-11 17:54:21

spilttheteaagain, I'm really sorry to hear about the loss of your first baby. Have you ever been treated for thyroid or did these problem show up during your pregnancy for the first time?

Thanks mpops, the first thyroid test I ever had was on the day I delivered her so it was completely undetected/ untreated throughout the pregnancy. Given that my results were all lovely and normal between pregnancies I'm half inclined to think it's pregnancy that causes the hypo type readings. Also they've tested me for the anti thyroid antibodies and I got a borderline result, so lots of being borderline, nothing definitive!

I will try and see a GP tomorrow and I will not be fobbed off! If I'm getting nowhere then as Eldon says I'll ask for a referral or phone my obstetric consultant I guess.

mpops Thu 17-Mar-11 22:11:34

Good luck at the doctor's. Don't go anywhere until they refer you to an endocrinologist, like Eldon said. I talked to my GP about my concerns today and he said that most GPs have no idea how to treat thyroid during pregnancy. He admitted that to me openly, which I really appreciated. They just follow guidelines for dosage when you are not pregnant but when things need adjusting, they have no specialist training to deal with that. So get yourself seen as soon as possible. Let us know how it goes.

camdancer Fri 18-Mar-11 02:59:26

split, I'm so sorry to hear about your loss. I hope it goes well with the GP tomorrow. I know that a few mnetters have gone privately to an endocrinologist to get things moving faster. Is that something you could do?

mpops, I think it is dreadful that your GP is being so rubbish about this. Ok, he isn't specially trained to deal with it but he should know where to get the information for a patient who needs it. After all, it is easily enough found on the internet! I hope you get your results soon and they put your mind at ease.

mpops Fri 18-Mar-11 12:10:13

Just got a call from the GP saying my TSH is at 2.2. He said that was ok at 11 weeks. Is it? He's increasing my dose from 50 to 75mcg.

Scruffyhound Fri 18-Mar-11 12:51:33

Hello there I have had a underactive thyriod since I was 16 im now 34. I can say that its not a problem so long as you get checked regular. Also I would advise if you feel tired, slow thinking maybe even cold hands/feet there are many more on the list as well. Its worth just going to the docs and asking for an extra test. They should not turn you away. Im now 37 weeks pregnant my thyroid was a little low (on 150mg)got to see the consultant at week 39. I had my DS 5 yrs ago and had no problems. This pregnancy has not been a problem either until now where the level is a little low. Getting both T3 and T4 functions tested next week. Dont let it put you off having a baby it seems to be a common problem having a underactive thyroid I know of 4 people who have it besides me. Just get your thyroid maintained and at a good level and you should be fine. smile

Scruffyhound Fri 18-Mar-11 12:53:27

Sorry one more thing to add if you have to take Iron suppliments if you become pregnant take them in the evening as the iron blocks the thyroxine. So take thyroxine AM and Iron PM.

Just wanted to say, thank you for the advice yesterday. I saw the GP today and he ummed and ahhed for a bit and the upshot is he has given me a prescription for 25mg for the next two weeks and he will be phoning my antenatal consultant on Monday to get his opinion before issuing a longer prescription. He will also arrange a referral to an endocrine specialist but wanted to discuss with my AN consultant who would be best (half way between two major hospitals, my GP knows the specialist at the hospital my consultant is not at, but wondered whether better to get all care done at the same place!)

So I think that's a fairly sensible plan for now.

mpops that's a slightly odd message from your GP - it's fine, but up your dose? I suspect what he means is it's nothing to worry about as it's not ridiculously high and the slight extra dose should keep everything under control.

Thanks for the tip about iron scruffy

Scruffyhound Sat 19-Mar-11 13:31:49

Your very welcome. Get that thyroid sorted and the dose right and you should be on track for getting ready for a baby! I was told once your on your correct dose and its stable you are just like every other healthy person by one GP. Im not sure he was right still have days where you feel like poo but dont know if thats the thyroid or just an off day?! Good luck listen to your body if in doubt see GP to get it checked.

ColleenEatsVeg Sat 09-Apr-11 14:14:57

This thread is amazing! I have a question. After being diagnosed with hypothyroid a year and a half ago, gaining 4 stone and having finally stabliting this past year on 100 mcg of levo (and losing most the weight gained) my DH would like to TTC this summer.

My GP is awful (say the least) after there temp GP helping and supporting me through my thyroid problems she is now gone and without fail my "old and registered" GP gives me the wrong dose every month and refuses blood tests under 6 months.

Little nervous to go and ask for a referral or just tell her I am TTC. I have thought about going with the info from that link.. How should I approach this with my GP and since I am already on 100mcg how far can I go up.

bessie26 Sat 09-Apr-11 15:19:08

collen - can you see a different GP? or change surgery?

Not sure what link you were referring to in your post, but here's one to some info from the NHS on what should happen when TTC & pg

monkey32 Sat 09-Apr-11 15:57:33

I just thought I'd add in my experience of hypothyroidism and pregnancy. I'm currently 33 weeks with DC3 and have conceived all three children in the first month of trying.

I have not had any problems in any of my pregnancies and my dose of thyroxine (100mcg) has stayed the same throughout the full 6 years from conception of first through to fairly imminent birth of third.

Maybe I'm just lucky but I thought it would cheer anyone who suffers from hypothyroidism and is hoping to conceive a baby!

ColleenEatsVeg Sat 09-Apr-11 16:26:15

Hi Bessie- my gp is the only female at the surgery, they tend to give her all female clients but tbh sometimes I think she could really care less. Nothing but bad experiences with her. Might try the other GPs but they are all men (small village, one surgery). I guess a lot of people go to men GPs.

Beesok Sat 09-Apr-11 17:43:16

Hello, I don't have as much experience as some ladies on the thread but I was diagnosed last year with a slight/subclinical under active thyroid, TSH was around 3.2 so the GP referred me an endo because we had planned to ttc in the next few months, he decided to wait for the time being as my TSH went down spontaneously (no other thyroid related issues antibodies etc all fine) but then I got pregnant unexpectedly so he put me on the lowest does 25mg just in case and my TSH was 1.1. I had a MMC but it had nothing to do with my thyroid and now am pregnant again - he upped my dose to 25/50 on alternate days and my TSH was at 1.4, the mw at my hospital also referred me to the endo clinic and I have an appt next week to check my levels etc.
I guess I don't have a serious problem - my endo is being cautious and really keeping on the minimum dose as long as all is OK but I have had no problems conceiving (first or second cycle and bam

I read that the main danger is in the first 12 weeks as the baby's thyroid is not yet developed and he relies completely on the mother's thyroid for all hormone levels after that it's not as serious as he/she starts producing their own but obviously you should be monitored throughout your pregnancy.

If I were you try to get a referral or go see a reproductive endo as it can't hurt and better sort out these things before you get pregnant. From my personal experience I noticed that a lot of drs in the UK are more towards waiting to see rather than pre-planning, I decided not to put added pressure on myself (worrying is part of pregnancy anyway why add to it ;) and did all the test before ttc - toxo - have had cats for years and guess what not immune to it so have to be extra careful now, thyroid, cmv, immunity to chicken pox & rubella (important as I work with young children and ooops! turned out I wasn't immune so had to get vaccinated)

Good luck!

mummybearroque Wed 27-Apr-11 20:31:52

so pleased to find this thread.. i was diagnosed with hashimotos disease (underactive) after having my first child.. was underweight before pregnancy but put on 3 stone and was miserable and utterly exhausted. my thyroid levels have been stable for about 7 months now and we are wanting to try for another baby but i am so scared. I had a miscarriage before my daughter and haven't had a period for 19months, still struggling to shift the weight that i put on with first pregnancy and estrogen levels really high. doctor says if i lose weight it will help greatly.. thats not the part that worries me, its when i do get pregnant.. scared of having another miscarriage and also how to get through pregnancy knowing about thyroid problem, with my daughter had horrific pregnancy which ended being hospitalised then caesarean, have app. with ob next week. anybody else had prblems with delivery with underactive thyroid? is it safer to have caeasarean or vbac? help!!!!

Confused2011 Thu 28-Apr-11 09:19:16

Hi mummybearroque,

Sorry to hear about your dreadful experiences.

There are lots of internet resources about TTC and pregnancy with an underactive thyroid.

When TTC with positive thyroid antibodies they can cause "immune issues" so you might need to take steroids and have other immune treatments.

Here's a list of webpages about TTC with an underactive thyorid and monitoring TSH levels in pregnancy:

www.fertilityfriends.co.uk/forum/index.php?topic=256702.0

www.bellaonline.com/articles/art21171.asp

www.endo-society.org/guidelines/final/upload/Clinical-Guideline-Management-of-Thyroid-Dysfunction-during-Pregnancy-Postpartum.pdf

thischangedmypractice.com/2011/03/14/management-of-maternal-thyroid-disease-in-pregnancy/

www.cks.nhs.uk/hypothyroidism/management/scenario_preconception_or_pregnant/preexisting_overt_hypothyroidism

There's also another recent thread on Mumsnet about hypothyroidism in pregnancy:

www.mumsnet.com/Talk/pregnancy/1163901-Underactive-thyroid

Good luck!

mummybearroque Thu 28-Apr-11 22:43:41

Hi confused 2011! thank you so much for webpages, you are a godsend!!
didnt realise how much information was available on the internet!!!

fifitrixabelle78 Sun 01-May-11 17:30:48

Hi everyone,

I'm a doctor but thanks so much for all of the info you've given me with the links. I really knew nothing about what to do with my T4 dose and monitoring etc. My GP is totally unhelpful and wanted to know why I had asked him to up my dose - doh - because I'm pregnant - and then prescribed me a measly 28 days supply. Git. Also said he had no intention of referring me back to the endocrinologist I saw previously as he'd leave that entirely at the discretion of the obstetric team - but my local hospital doesn't even do booking appts till 12/40!

I'm totally paranoid about risk of miscarriage (am 5+1 weeks today) and seriously thinking of taking some selenium as my TPO was positive 2 yrs ago. Think I'll take matters into my own hands and speak with my old endocrinologist next week and see what he suggests.

Sorry for the rant, ladies but really glad to know it's not just me who's going through this mental torture.

Daisy32 Thu 05-May-11 11:37:07

I had a miscarriage at 10 weeks (a few days ago). All guidance says don't blame yourself and I know I am just unlucky 1 in 5 (or 4 - depends what you read). But I looked into reasons for miscarriage on line anyway because obviously want to be more successful next time we ttc. Came across link to hormones and thought hmm I wonder about my thyroid problem so researched further.

I had no idea that hypothyroidism could affect pregnancy and TSH etc needed to be monitored. Went to doc at 5 weeks preg. and nothing mentioned at all. Booking appt came through the post - appts at 12 weeks and scan at 14. Of course it could have had nothing to do with the miscarriage but my husband and I are still cross that this was missed.

We want to make sure we get this right this time. I have always been so trusting of doctors. Obviously the GP is the gateway to the experts but I do feel this should have been picked up. Any advice?? Read all the messages above. I really don't feel I want to trust the doc to treat me alone next time. Should I request endo or....not sure???

Confused2011 Sat 07-May-11 13:39:21

Daisy32, just catching up with old threads as I have been away. So sorry to hear about your MC, and don't blame yourself, as first trimester miscarriages are rarely something we can prevent. For the future you could ask your GP to send you to see an endocrinologist who specialises in thyroid and pregnancy, or a fertility specialist who specialises in immune issues, as you'll probably be advised to take steroids and clexane injections (not too painful!) as well as having your TSH levels monitored while trying to conceive and during the pregnancy. It's more about making sure the baby develops properly, particularly the brain, rather than preventing early miscarriages.

Love your idea about GPs being "gateways to the experts". I think the phrase is gateKEEPERS, ie they are there to STOP you being seen by specialists unless they think you need to be, whereas in Europe the public can usually make appointments directly with specialists without seeing their GP first.

fifitrixabelle I had a similar problem to you trying to see an endocrinologist. Finally managed it on the NHS at 14 weeks!!! Only to be told by the endocrinologist that the crucial time for T4 management is the first trimester. Luckily I was able to get TSH/T4 tests done by my GP and midwife and got my TSH level down below 2.0 early on in the pregnancy. Definitely agree you should speak to your old endocrinologist next week. Should you also be on steroids and clexane due to your previous positive TPO result?

ColleenEatsVeg Mon 30-May-11 21:00:21

Just want to thank everyone for sharing your experiences. I booked an appointment with my "could care less" GP to discuss my thyroid and TTC. This thread has given me some great printable info to take with me.

Thornelius Fri 15-Jul-11 17:30:33

Hi Ladies, I have kind of scrambled into this thread whilst looking for answers, I have been ttc for the past 2 years and last year had a misc at 5 weeks so doc was looking into it and sent me for bloods, turns out I have hypothyroidism and have for the past 9 days been on levothyroxine 25 mcg,
My last af was on 4th June (sorry tmi) and haven't had one since, would it be the meds making it disappear? I did a pg test and it said neg.
My doc was a bit vague about meds and what to expect, I don't know whether I should continue ttc or give up for a while and let things sort themselves out.

I feel better for typing all of that, I haven't discussed any of this with my family only my hubby and he's knows less than me! :-)

apple99 Fri 15-Jul-11 18:49:39

I don't know the answer to your question but it is not good enough for your GP to be vague with answers, is there another GP at the practice you can ask to see?

I myself am hypothyroid and currently 35 weeks with dc2. I take a dose of 175mcg of levothyroxine which has been increased to 200mcg whilst pregnant.

I think if you have been ttc for 2 years and suffered a miscarriage then your GP needs to be doing tests for both you and your dh to see if there is any underlying problem although I know it can just take a long time for some people to conceive.

Miscarriage is heartbreaking (I had one myself last year at 9 weeks), but it shows you have been able to get pregnant which in itself is a good sign. I have been told by GP and consultant that having hypothyroidism shouldn't prevent you getting pregnant and continuing with a healthy pregnancy especially if you are being monitored throughout for changes in your levels. I hope you get the answers to your question soon and good luck for the future.

Sorry for the long ramble.

pregnantmimi Sat 16-Jul-11 21:41:17

my thyroid levels all over the place in first trimester was overactive then went to underactive staying on the 200 dose the doctor aske if i had actually stopped taking it as was so low I hadnt and the only thing I was doing was taking prenatal vitamin at same time the iron can cancel it out. So the tiredntess I felt in first trimester I put down to pregnancy was actually low thyroixine levels showed up on blood test as had none in body i take the prenatal at night thyoxine in morning and fine now and its ok. and no problem getting pregnant happened first month of tryingxx

TigerseyeMum Sun 17-Jul-11 00:57:44

Thanks for this thread, I am ttc but I was slightly overdosed since the spring, so my new GP has lowered the dosage. Sounds like I need to check the actual figures from her - I hate the idea that piddling around with my thyroxine might affect my chances of conceiving, or maintaining pregnancy sad

bessie26 Thu 21-Jul-11 08:46:17

pregnant any idea how far apart your thyroxine & multivit need to be? I take my thyroxine at around 645 when I wake up & my multivit with breakfast at 8. I did try taking my multivit later in the day, but I just kept forgetting!

bessie26 Thu 21-Jul-11 09:00:50

tiger defo get the actual figures from your Dr. If you search through this thread you should find a link to some NHS guidance about TTC & what your levels should be - it seems very few Drs are aware of it!

mpops Thu 21-Jul-11 10:34:10

Thornelius and Tigers, definitely get your full results on a printout from your GP and insist to be referred to an endocrinologist. GPs often don't know much about thyroid dysfunction and tend to rely on the internet, guesswork and general guidance. TTC aside, it's really important to get the dosage right and to be monitored properly until you find out what works for you. I was diagnosed 18 years ago and I'm now 29 weeks pregnant, under consultant care. It's going well but they're keeping a close eye on it.

Also, if you're taking iron/pregnancy tablets and thyroxine, make sure you take them at totally different times of the day. I take my thyroxine in the morning and my pregnancy meds in the evening with my dinner, so the iron doesn't affect the thyroxine being absorbed.

JessieOg Fri 26-Aug-11 14:45:52

Hi All. Wondering whether any of you can give me advice. I was diagnosed with Hasimoto's Disease a few months ago. Am now on 100mcg thyroxine per day. I've just found out I'm pregnant (about 4 weeks) and having read that the level of thyroxine in early pregnancy can be quite important I went straight to my GP. Unfortunately had to see a new GP and he couldn't have been less interested! Basically told me I didn't have to think about it until after my midwife's appointment at 10 weeks when I would probably be referred to a consultant who would decide whether to increase my meds. I'm very uncomfortable with this because my last TSH level was 4.9 and I've read should be nearer 2 in pregnancy. Also I fear that leaving it til 10 weeks I will have missed the crucial period if it is indeed important to get the levels right in the first trimester. I've read the NHS advice about increasing by 25mcg when first pregnant and told him about it but he just dismissed it. He wasn't even going to send me for a blood test until I insisted! Am I being silly or should I persist?

Hi Jessie - I've had a really similar experience today and am stressing about it. I am four - five weeks pregnant and have been on 75mg of thyroxine since the birth of my last child about two years ago. My doctor today said she'd get me a blood test but the results will take a week, no need to up the dose immediately (although she said she couldn't stop me if I wanted to) and didn't want to test for T4 but said she'd ask the lab (when I pushed it) but said they might not do it?

I talked about the NHS article I've seen mentioned here but she wasn't really interested. She didn't seem knowledgeable at all and told me that it wasn't a problem at this point of pregnancy and that I will only need testing every 8 weeks after this because they wouldn't be able to see the results of any increased medication quicker than that anyway. I thought that the point was more the way my body is changing in that time frame though.

Anyway - no help at all but as stressed as you!

www.cks.nhs.uk/hypothyroidism/management/scenario_preconception_or_pregnant/preexisting_overt_hypothyroidism

Persist persist persist and speak to the Obstetric Physicians at your EPU/pregnancy assessment unit. I only say this from experience-my GP told me it was no big deal that my TSH was 7.4 last week. I was not satisfied (having read the NHS summary linked to below) and did all the asking myself. I had an immediate appointment with a consultant and immediate medication!

Thank you theidsalright, I won't get my TSH result back until next monday which is a bit crap. One thing I don't know is how I know if I'm overt or Subclinical (or something else?) and if that makes any difference?

pregnantmimi Tue 30-Aug-11 19:46:41

I have a underactive thyroid very underactive and it wasnt a problem gettin pregnant (happened first time) and I have had some problems but not related to thyroid I have always thought as long as you have the meds your thyroid is fine shouldnt have problems. Having said that you do need to have it checked more and if goes under can affect babies development my doctor said but as long as you take your med keep eye on levels should be finexx

pregnantmimi Tue 30-Aug-11 20:00:16

oh the iron and tyroid yes take apart i didnt and i went bit underactive cause of it

rolling my understanding (I'm not a medic) is that sub-clinical hyperthyroidism in a woman who is not pregnant (i.e. TSH between 4-10) would not be a problem really but in a pregnant woman IS a problem that can affect baby's development/make you more likely to miscarry etc. That was what freaked me out (past history) and made me very pushy indeed and go over my GP's head! TSH >10 is overt hyperthyroidism. The NHS paper linked to above is a very good summary.

JessieOg Thu 01-Sep-11 16:26:03

Rolling - it is stressful isn't it? Seems that the advice from theidsalright to persist was absolutely right. My GP wanted to send me away with no tests or anything and let me wait until 10 weeks but I insisted on having a blood test. Its a good job I did because he telephoned me last night to say that my levels are raised and that he thinks he needs to put my thyroxine up by 25mcg! If I had taken his advice and gone away quietly I wouldn't have known my levels were raised. He has also now said he has referred me to an obstetrician - so am wondering whether he had second thoughts. Its depressing that we need to take control of these situations instead of the GP taking the lead - but persistence certainly pays off. I'm keeping everything crossed that my levels are now OK and won't have a negative impact.

Thanks everyone, it's hard knowing that your doctor might not be giving you the right advice isn't it. It's one thing when it's your own health (not that that's ok) but really another when it's your future baby.

I'm surprised that the correct information on this isn't more well known because hypothyroidism is really common?

I had my blood test today but won't get the results back until Monday. I also am hoping they'll test for T4 but need to wait to find out. I dropped off a copy of the referenced article with my doctor but don't know if she'll get it or read it - or if she'll think I'm being a hypochondriac. In the meantime I've raised my dosage by 25 (was originally on 75).

pregnantmimi Tue 06-Sep-11 05:32:56

bessie 26 sorry for late reply just checked thread In regards to taking prenatal vitamin and thyroxine apart I take the thyroxine in the morning and the prenatal vit in the night. So they are well apart if I forget my throxine and have to have it at night I dont have the prenatal only because I think the thyroxine is more important but ideally I like to make sure I have both if possible.

womanlytales Tue 06-Sep-11 10:42:14

Hello, I have been following this thread quite closely - thank you all for asking your questions and for patiently responding to them even if that meant repeating stuff that you've said earlier.
I have hypothyroidism - after reading the NHS Clinical Knowledge link I realized I don't know what type I have. I reached out to my GP to ask if I can have a blood test and she refused saying that I was tested in July (TSH only - was in normal range) and being pregnant now does not make a difference. I also sent her the link but I doubt she's read it - the clinic never acknowledge emails.
My next step is to book an appointment with my GP and be more insistent for a blood test or a referral to an endocrinologist. Please note I am in my 7th week of pregnancy and have a mid-wife appointment on Sept 20 - ie, 9th week.

Once again, thank you for your advice and information - I will update you on how my appt with GP goes. I am also trying not to panic or get stressed about this even though that can be quite hard to do.

mpops Tue 06-Sep-11 10:59:46

womanlytales, being pregnant does make a difference! There are very clear guidelines. You should print this out and take it to your GP: www.cks.nhs.uk/hypothyroidism/management/scenario_preconception_or_pregnant/preexisting_overt_hypothyroidism. I've had blood tests every 4 weeks throughout my pregnancy to ensure the levels are always correct and that the dose I was on was fine (it was increased as per the guidelines).

Good luck!

bebemad Tue 06-Sep-11 14:01:43

Hi I am 6w4d, I m/c last year, I have an underactive thyroid and hashimotos and have had a lot of support from my endo this year. As soon as i got my bfp i called my endo my TSH was 3.48 (he is a saint listened to all my full on drama queen worries) and he said to bump my thyroxine from 75mg up to 100mg straight away and go back for another check in 3 weeks its now 1.1, he said catching my TSH early is good and will not effect baby.

He told my he would prescribe me 200mg selenium daily as i have hashimoto's and it will help the antibodies.

Also my specialist told me because I have an underactive thyroid I also need a pregnancy vitamin with Iodine as it is important for the baby to get iodine as women with thyroid problems are lacking this vitamin, my dr prescribed me Femibion, I checked it is also available in the uk. It is expensive though.

I have leant so much in the last year thanks to my endo, the TSH needs to be between 0.5-1.5 for the whole of your pregnancy and ideally you should not TTC until your TSH has been stable at this level for at least 10-12 months (I know this seems like an eternity when ttc but your health is so important) I wish my thyroid was better controlled before i fell pregnant as I feel i will spend the rest of my pregnancy worrying what was my baby missing out on in the first few weeks.

ToastnTea Tue 06-Sep-11 20:24:56

Ok,I'm a bit worried now.
I was diagnosed with an underactive thyroid 3 years ago as my body did not ovulate and I was tired constantly. I was borderline underactive and put onto 25mcg a day. Was never actually ttc, yet I fell pregnant in March 2011 and found out 8 weeks later. I had no symptoms/morning sickness at all.I was told by my GP to stay on 25mcg, even though my annual check (in Feb) the reading was 'ok'. I am now under consultant care at the hospital.
I've had 2 blood checks - in June the reading was 2.5 and in August it was 2.8.
I was told in August that my readings were slightly high at 2.8 and that the Consultant would be happier if my readings were 2.5 - so I am now on 50mcg a day 'to make the levels fall a bit'. My appetite is odd and I seem to have put on about 1.5stones (which for me is v good, as exercise has reduced loads)
I have to wait to mid september for my next appt with consultant and find out readings from blood test taken a couple of weeks ago.
I'm slightly concerned after reading these posts that I maybe overlooked here - and that the target of 2.5 is really high???
With 14 weeks to go I do have a smallish pregnant bump( I am 5ft2)
So, has my condition not been managed well ??

My doctor called me back to say that the link we are looking at isn't the protocol they follow. She has printed a copy of their protocol and I'm picking it up tomorrow. It worries me why it's so different.

bebemad Wed 07-Sep-11 09:37:25

toastntea, dont be too worried your tsh is not too high but it does need to be lower and hopefully the 50mg is working I'm sure everything is fine.

It is so bad that esp in the UK that you have to fight all the way for proper treatment, I was misdiagnosed by the NHS on my thyroid for 16 years which caused my thyroid to shrink due to damage, I learnt the hard way now I only see private drs about my thyroid esp drs which have trained in the states, it cost a lot but to me my health is vital.

ToastnTea Wed 07-Sep-11 16:01:56

bebemad thanks for the reassurrance, there is so much conflicting info about and so many things that are related to the condition - honestly sometimes its aworry about our Drs!

womanlytales Mon 19-Sep-11 13:49:17

Hi, my test results came back and at wk 9 of pregnancy my tsh is 4.22 and Serum T4 is 16.49. My GP says that this is well within the range during the first trimester. What would you advice I do next? I have my mid-wife appt tomorrow. As far as preg symptoms, I do not have any vomiting or nausea - though I feel like my day goes by in a daze - I can't concentrate on work and nothing works like sleep - I feel like I can sleep at the drop of a hat. I am currently on 75mg of thyroxin and have been on this dosage for many years now.

UniPsychle Mon 19-Sep-11 18:24:26

womanlytales I am 11 weeks today and just come back from the endocrinologist at the ante-natal clinic. I am also on 75mg and got my bloods today: FT4 15.7 and TSH 4.40 -similar to yours. The consultant has now put me up to 100mg based on those results to try and get my TSH down below 2.0. I was originally on 25 mg and my bloods 6 weeks ago were a scary TSH 7.60 and FT4 12.8. I am now worried that I may have done damage to my baby in that early period, but not a lot I can do about it now I guess. As I had already got info from mumsnet, when I found out I was pregnant I took it upon myself to book a blood test with the practice nurse without asking my GP first! My then clueless GP said that the aforementioned results were fine. However, I knew they weren't and so rang the community midwife and she wrote to the consultant at the hospital who then got a nurse to ring me back a week later to increase my dosage from 25 to 75 and arranged my 6 week follow-up today. This was easier for me to do as I had consultant led care last time and so the midwife was happy to do so. But maybe you could try talking to your midwife tomorrow, they are more aware of thyroid problems in pregnancy and whilst they can't prescribe, they can refer you to consultant led care and can ring the hospital for advice on your behalf. I'd take a copy of the guidelines with you as back up. BTW I have rubbish sickness and deadly tiredness, but I did last time too and I didn't have any thyroid problems then...

ilovespinach Mon 19-Sep-11 18:57:37

I'm not sure of my levels at the minute but I'm 8 weeks pregnant and taking 75mg a day.

Over the last week or so I have the sensation of a lump in my throat when I swallow and I feel there's a little pressure there.

My GP wasn't that concerned when I told her I was pregnant (although she did up the dose from 50 to 75mg). I have an appointment at the beginning of October to check my blood - as I have this wierd sensation should I ask for this to be moved forward?

thanks

UniPsychle Tue 20-Sep-11 19:07:06

womanlytales how did you get on today?

ilovespinach your GP seems to know about putting your dose up, but maybe you could get your bloods a bit earlier? Depends when they upped your dose as they usually like to have 4-6 weeks on your current dose to see what effect it has.

Re: lump in throat, it could be thyroid related as I think the thyroid gland enlarges in pregnancy in all women anyway? But it could easily be reflux/heartburn - very common in pregnancy and this is a common symptom of it, I get it sometimes.

sunnyday123 Tue 20-Sep-11 19:22:29

i am 33 and have been hypothyroid for 7 years following a miscarriage (may have already had it before and been the cause of the miscarriage - they're not sure) - took average 6 months to conceive. I had no extra tests or scans during first pregnancy and everything was fine- i think i slipped through their radar! With second i had one blood test per trimester - it was no big deal for me - my levels have always been regular and changed only slightly during last trimester. Now i get checked once per year. interestingly my consultant says 0.5 - 5.5 is normal !

womanlytales Wed 21-Sep-11 15:17:41

I did go with this to my mid-wife who referred me to a doctor who had a printout saying the upper limit for tsh is 3.7 but refused to up my dosage saying it's just border line!! Now they have referred me to an endocrinologist but i do not see them till oct 07 - the good news is they have taken all the bloods... uni the doc said that its only antibodies that penetrate through to the child and cause thyroid related issues...were you tested for those? it is incredible how everybody's experience is so diverse on this...

ilovespinach Wed 21-Sep-11 17:40:30

I've spoken to me gyne and she wasn't so concerned. She said it's ok to wait for the original blood test next week and it would only be dangerous if I stopped taking the meds.

Why does it have to be so complicated ? smile

UniPsychle Sun 25-Sep-11 20:24:16

ilovespinach totally agree, am fed up of being an interesting patient! Sounds like your gyne was reassuring.

womanlytales at least they're keeping an eye on you so if your TSH goes up, they can up your dose. As for it affecting the baby, if you're seriously undermedicated or undiagnosed then this increases the chance of miscarriage and can lead to a child with learning difficulties. I've since had a chance to look through some research that confused2011 posted earlier - it was really helpful and had reassured me that at the levels I was at, it's unlikely to have done any real harm. I saw a consultant last week and they mentioned about antibodies and I'm getting tested for those. In my case, it's because although I'm now underactive, I was overactive in my 20s and the antibodies for Grave's can pass to the baby and make them overactive too. I'll have to have extra scans and extra measuring of the heartbeat later to make sure this isn't happening. Having said that, no-one seemed to be bothered about this with DS and I didn't get extra tests and he turned out fine!

All this anxiety and I don't even know for sure there's one in there yet, my scan's not till Wednesday.

notlettingthefearshow Sun 25-Sep-11 23:09:29

I have an underactive thyroid and take 125mg levothyroxine - before pregnancy it was 100.

It hasn't made any difference to my pregnancy and has no influence on the labour.

I have had my levels monitored monthly in the endocrine unit. They explained that it's only in the first few months that it's crucial to get the medication correct. After that the baby has its own thyroid. Because my problem is not genetic, there is no danger of the baby having thyroid problems.

The endocrinologist told me that the only danger in pregnancy with thyroid problems is if the patient has severe under/overactive AND if she refuses to take medication. In that case there is a chance of learning disabilities. If you go to all appointments and take the medication as prescribed, there's no problem.

Overall, it is nothing to worry about. Phew!

SpeckyB Mon 26-Sep-11 19:41:16

Hi

I'm new to Mumsnet and have been TTC for 4 months. I have had Hypothyroidism for 7 years, which has been mostly under control. I had bloods done on 10 August and my TSH was 4.11 and T4 was 16.0. I had been taking 125mg or 150mg (alternative days) but increased to 150mg daily to reduce my TSH levels a bit.

I had another test on Thursday (22 September) and my T4 was 19, but my TSH had shot up to 15.5. I've been sleeping badly in the last week and had a night sweat (I'm 32) so thought my TSH was going to be at the lower end of Normal. I did a pregnancy test today, but its negative. Its day 28 for me, but my cycles vary from 28 days to 32.

Does anyone know why my TSH has shot up so much??? I am really worried as I expected the TSH level to have improved (given I was taking a bit more thyroxine). Its all making me feel miserable.

Any help / advice would be very welcome! Thanks in advance

dee1982 Thu 19-Jan-12 17:26:59

Hi,

i have been diagnosed with a under active thryiod about 8 months ago and am taking 50mg levothroxine, i am now 13 weeks pregnant and have not increased by dose until today to 100mg

the reason i didn't increase before was becuase the doctor refused to do a blood test when i visited in at 6 weeks pregnant (when i found out), yesterday i visited a endocrinologist who took tested and told me to increase to 100mg straight away

my question is would i have done any damage to my baby as i am really scared.

deepa

igggi Sat 21-Jan-12 12:24:01

It is odd that your gp wouldn't help you, I thought it was standard to increase dose when pg. However, as I understood it damage would consist of being more likely to have early mc - which clearly hasn't happened to you! Your dose is still quite low so your levels can't have been that far off. Make sure the specialist sees you again at intervals and ask him/her about your concerns.

dee1982 Mon 23-Jan-12 16:42:03

igggi,

thanks for the advise, it is a great reliefe.

anyone else have experience for a second opinion?

deepa

MrsDoolinlady Mon 06-Feb-12 10:14:10

Hello,

I'm new here and have come across this blog whilst frantically trawling the internet. I'm soooooo confused with all the info and stats, that I don't know what to do? Can someone help me please?

I have an under-active thyroid and have been taking thyroxine (100mcg) for the last 13 years. I am currently 12 weeks pregnant with my second child and have still yet to see a midwife or a consultant! With my first pregnancy, my dose was immediately increased to 125mcg by my then doctor, I was 6 weeks pregnant at the time. This seems to be the norm right? I then fell pregnant a second time, but sadly miscarried at 6 weeks.

This is now my third pregnancy and due to light brown spotting at 6 and 8 weeks, I saw my doctor who referred me to for an early scan. At this point my doctor commented on how in my previous pregnancy (which was trouble free by the way!), I should not have had my thyroxine dose increased so early. This confused me somewhat, as my doctor at the time was head of the Thyroid unit at my local hospital and this was further backed up when I saw a consultant at my 12 week scan. My doctor asked that I take a blood test but at no point did she tell me to increase my dose. I rang my doctors for my results, as I have heard nothing. On the 6th Jan, my results were as follows; T4 13.4, TSH 3.8 and T3 4.2. Apparently no action was needed.

I have since been waiting to see a midwife (my first appointment), which is tomorrow. I will be 12.5 weeks. I presume I will then have to wait a further couple of weeks before I finally see a consultant and have my dating scan.

Feel like I'm slipping through the loop here and being left. Should I have been more pushy with my doctor and had a second opinion? Do my results sound ok? Worried that I should have had my dose increased earlier and that this may be detrimental to the baby and brain development.

Could someone give me any advise before I send myself into a tis?

Many thanks xx

igggi Mon 06-Feb-12 10:35:31

Hi, sorry for what's happening with you, really surprised it is all happening so slowly. If you are having the NT scan doesn't that have to be by 13 weeks? I'm not too sure.
Thyroids though I do know about. I've seen the endocrine specialist about mine in this pregnancy, and was advised to increase my dose by 25 (for second time, first being as soon as I knew I was pg) as he wanted by tsh to go down to about 2.0 and the t4 to be between 14 and 18. I think your levels aren't great, that doesn't mean I think you have harmed your baby at all but I think you are not at optimum levels and might feel worse than you need to. I would take 25microg extra myself if I were you but then my GP is used to me telling her "after the fact". I think your first doc was much more on the ball! I do think it's time to start being a bit pushy, it's for your baby after all. Getting to 12.5 weeks is a big achievement, I do think things are going well for you but that you deserve more care! (You are in UK by the way?)

MrsDoolinlady Mon 06-Feb-12 12:06:30

Hello igggi,

Thank you for your kind reply. Yes, I'm in the UK. I know, it's been so much more of a drawn out process this time :0( Well, as I had an early scan on the 10th Jan (due to the spotting) at 8.5 weeks, I guess that kind of delayed things and they couldn't get me a midwife appointment until tomorrow (7th Feb). Then I would imagine, the midwife will arrange for my NT scan - sooner rather than later I hope! Another doctor at my surgery is going to call me at lunchtime to go through my test results from 6th Jan. After reading all the threads and guidelines - see link http://www.cks.nhs.uk/hypothyroidism/management/scenario_preconception_or_pregnant#481050006 my results as you say, aren't great and the 'No Action Needed', must be questioned! I'm terrified that I might have caused damage to the baby in not being treated sooner and that the baby may be more susceptible to IQ defects. I feel like crying I'm so upset... I've read it's so important that the dose increase happens in the first trimester and after that it's not so important, as the baby's own hormones take over. So is it too late for me - has any possible damage already been done? I just don't know why my doctor refused to increase my dose and why she questioned the previous consultants when they did so. She was so adamant about it! I am 'normally' very pushy and like to be on the ball with everything. So naturally I am beating myself up about this :0(

MrsDoolinlady Mon 06-Feb-12 12:26:50

I found below these interesting snippets of information, which put my mind at ease a little...

"Another point worth noting and of utmost importance is that supplements containing iron will impair the absorption of thyroid medication, so a large gap between dosage should be observed. E.g If you take your thyroid medication in the morning, leave at least 6 hours before taking an iron or multivitamin supplement containing iron."

I take Sanatogen Muti-Vitamins for pregnancy before I go to bed and then my Thyroxine first thing in the morning. So I was relieved to read that I do always leave more than a six hour gap between taking the two.

"Women with an existing treated hypothyroid condition have no more chance of birth defects in their baby than anyone else. So, if you have been reading about things like low birth weight, low IQ, miscarriage, birth defects, still birth etc, it should be noted that this is only in women with untreated hypothyroidism who are unaware that they have the condition and where TSH tests have not been performed to identify this."

See website -

http://www.well-women.com/Pregnancy.html

igggi Mon 06-Feb-12 13:31:51

That is really interesting about iron, my GP has just prescribed 3 doses of iron a day for me, didn't mention probs with the thyroxine - will be quite hard to separate 3 lots of iron from the thyroxine by 6 hours!
Please try not to worry OP, your levels may not be great but they aren't terrible either (I remember having a T4 at 11 when pg with ds, that was untreated and he isn't displaying any problems with IQ that I can see!). And in fact, your earlier levels may have been better - my t4 has been dropping througout my pg (2nd trimester now) so the levels when the baby needed it most were actually ok.
Good luck with the midwife - and welcome to Mumsnet!

MrsDoolinlady Wed 08-Feb-12 12:57:42

Thank you for your advice and kind comments. It's such a relief to know someone out there is listening!

Well, I phoned my GP that same day, after getting into a panic over my TSH level and asked why my previous GP hadn't increased my Thyroxin medication. I was armed with the following facts; UK guidelines suggests an optimum TSH level of between 1 - 2 when pregnant, with a cut-off of 2.5. When you are NOT pregnant, a TSH range of between 0.5 - 5 is considered 'normal'. As my TSH is 3.8 and I AM pregnant, this is too high and therefore my Thyroxin should be increased!

My GP said she would call the Obstetrician, do some research and get back to me that evening. Well, I got the call back and she concurred that yes, I should increase my dose immediately from 100mcg to 125mcg. She made no apology for the error that the previous GP had made in not doing so earlier. She wasn't aware that the 'normal' TSH range narrowed almost by half for when you are pregnant, compared to when you are not. Thus the reason 'No Action Needed' was stamped on my blood results! Wow - can you believe it? Worrying isn't it? It just goes to show that you cannot take everything that GP's say as red and these are very experienced doctors we're talking about here and they've never come across this before??? I think this had been one big learning curve for her too!

My biggest fear of course was, had any detrimental damage been caused to my baby's brain development due to the lack of Thyroid hormones in my first trimester? I've already had a miscarriage, which for all I know could have been the contributing factor! But who can say for sure?

My GP explained that even though my TSH levels were moderately high, my T3 and T4 levels were within the 'normal' range for when you are pregnant (the ranges in your first trimester should be T3 = 4 - 8 and T4 = 11 - 22). It is these two hormones that the baby needs a sufficient amount of for healthy development. As TSH is a 'Thyroid Stimulating Hormone', my TSH of 3.8 fortunately hadn't effected my T3 and T4 levels and therefore she couldn't see how this could have caused any detrimental effects to the baby.

So I now feel sooooooooooo much happier. I finally got to see the midwife for the first time yesterday and she was not impressed by the lack of care I had received up to now. She assured me that things were going to get better and couldn't apologise enough for all the incompetency and delays I'd experienced. I will be of course consultant led from now on and my midwife urgently put in a request at the hospital for me to have an NT Scan (the cut-off is 14 weeks) and I'm 12.5 to 13 weeks! They'd better hurry!

Bring on the second trimester I say and let's hope it's not as stressful!

I hope my facts and figures can help others too. Please feel free to get in touch, I will be more than happy to try and help with any info I've picked up so far.

Good luck and take care to all Mummies!

Mrs DDG xxxxxxx

Clarella Wed 29-Feb-12 20:41:50

Hi all and esp Mrs Doolinlady, thankyou for your advice - finally some clearer guidelines! This is the first time I've ventured onto mumsnet trying to find answers regarding pregnancy and thyroid.

I'm 35 and have only been ttc since Jan. I've had an underactive thyroid since I was 20, ironically after starting the pill. I've been on 125/150 alternate days for a few years, till this year when I upped my exercise etc prior to my wedding in Oct! I dropped to 125 and have felt great this year.

Last week a strange period / possible pregnancy prompted me to visit the docs,( it wasn't) and I went again tonight after the report on thyroid in early pregnancy at the end of the radio 4 prog Medical matters last night ( on iplayer, last 10 mins). I need to listen to it again in the light of what my doc has said as I think some bits were a bit misleading and vague (such as raising meds by 25 to 50 percent).

Basically she said that as soon as I know I'm pregnant I need to go for an appt immediately for bloods etc and i'll be referred to hospital and they'll take it from there. I requested a blood test now to get a clear picture as the last one was at Christmas but only tsh - can't remember what, poss 3.8. My usual doc last week said that being the higher end of normal range was good for ttc. (not sure if was tsh or t3/4, poss the latter) However as the doc today pointed out if its too high you could run the risk of not ovulating etc.

I think my local nhs is pretty good and on the ball so I am trusting their judgements at the mo. At the very least your doctor should be aware of the importance for good control before conception and also early monitoring during as soon as pregnancy is confirmed.

Thanks for the note about iron and thyroxine and if anyone has any further advice it will be greatly appreciated!

Best of luck to all xx

ShellyBobbs Thu 05-Apr-12 15:44:49

I'm not usually one to worry and have already been refered to a specialist due to my underactive thyroid. However after visiting my GP today for the results of my first blood test taken during pregnancy and him telling me that he didn't really know the effects of my underactive thyroid and pregnancy, I'm feeling slightly anxious!

I'm 8 weeks pregnant, on 100mcg which has not been increased and the results from my recent test are

Serum free T4 level 11.3 pmol/L (7.0 - 17.0)
Serum TSH level 3.67 mu/L (0.40 - 4.50)

I take it from reading previous posts that this result is far from ideal?

I had no idea that this damned thyroid disorder could cause so much havoc on pregnancy, as if we don't suffer enough with it.

Thanks for any comments.

maples Thu 05-Apr-12 16:28:24

Shelley I am not a hcp but have hypo and would expect to have my medication going up a bit if tsh and t4 were at those levels in pg.

you need to copy the poster a little upthread and call the GP practice - point them to the guidance that says your tsh should be under 2 and ask to have your thyroxine increased by 25.

ShellyBobbs Thu 05-Apr-12 18:22:03

Thanks Maples, the link given a while back is very interesting http://www.cks.nhs.uk/hypothyroidism/management/scenario_preconception_or_pregnant#-482785 and I'm going to take that in with me and demand there and then an increase, unfortunately I now have to wait 5 days to do that due to eastersad

Don't know what is up with me with this pregnancy, it's my fourth and I haven't worried one bit during my previous ones, but saying that I was borderline all through my last one eight years ago. Just feel very anxious about the whole pregnancy, think it may be my age (late 30's) and the fact that it came as a very big surprise to us, a very nice one mind.

Thanks again, this thread is really good.

frankie3 Thu 05-Apr-12 18:26:28

I have underactive thyroid and have had two dc, with an underactive thyroid throughout. What affect does an underactive thyroid have on the unborn baby?

maples Thu 05-Apr-12 18:34:02

Frankie afaik no effect whatsoever if thyroid is properly controlled.

If not controlled learning difficulties can occur in very severe cases, I think

sambrads Thu 05-Apr-12 18:36:12

hey ladies I to have an underactive thyroid. have 2 DC and am 25 weeks and due in July.I have never had a problem with my thyroid affecting the pregnancies or the births. I have not a clue about levels got my levels checked and results were:

TSH 4
T4 22

is this normal?? im on 200mg of thyroxine and never have had to increase this from i got pregnant. I always trust my doctor but from reading this thread im not so sure now.

ShellyBobbs Thu 05-Apr-12 19:03:41

Sam, I had total trust in my GP. After going through 5 previous GP's, he is the one who diagnosed me with my underactive thyroid 8 years ago and has been great ever since, I was flabbergasted today when he openly admitted that he didn't know what affect an underactive thyroid had on a pregnancy and that my specialist would answer any questions. Even more so when I just checked with him that I was doing right by leaving at least a 9 hour gap between the iron tablets I was on and my thyroxine, he looked it up and told me he didn't even know you couldn't take them together! He actually found out it was at least a 2 hour gap although someone previously said it was 8 hours.

Just goes to show a GP is just that, a GENERAL practitioner.

frankie3 Thu 05-Apr-12 19:13:48

My underactive thyroid was only diagnosed recently after I kept asking my go to test it. I found out that I must have have an underactive thyroid for years and asked for a print out of all my previous blood tests. I had a blood test a few months before falling pregnant with ds2 and my T4 was 11.8 and my TSH was 5.56. Does that mean that I had an underactive thyroid while pregnant with ds2 that was never picked up on by my gp???

minipie Thu 05-Apr-12 19:21:01

Really glad to have found this thread. Please can anyone help me with an urgent question?

I was diagnosed in December with subclinical underactive thyroid after many months unsuccessful ttcing.

Dec results 9.5 TSH, normal T3/T4.
Jan results 10.5 TSH, normal T3/T4.
End of Jan put on 50mcg Thyroxine per day.
Feb results TSH of 2.75, normal T3/T4.

March - no blood tests.

27 March - BFP!

I am now 5+2 weeks pregnant which I understand is a real "danger time" for thyroid getting more underactive. I have not seen a doctor and cannot get to see one till this time next week, so I will be 6+2.

I have no idea what my thyroid levels are at the moment or if my TSH has risen since getting pg. I am really worried that it could be increasing and causing the baby damage. I have been feeling very cold and shivery and quite tired, no idea if this is related.

Here's the question: should I self-medicate and increase my thyroxine until I can see a doctor and get some blood tests? and if so, how much by?

Help!

blondieminx Thu 05-Apr-12 23:49:43

minipie congrats on your bfp!

Only you can decide whether to self-medicate.

In case it helps your decision, here's my experience: I was advised to increase my dose by 25mcg when just pregnant with DD, after my GP rang the endocrinologist to see whether to increase it (was on 50mcg at the time and the previous blood test showed TSH of 5.5... I went to the GP armed with the NHS link given upthread and explained I didn't much fancy another early miscarriage and since in pregnancy the TSH should be 2.5 or under, could they increase my dose. Locum GP waffled a bit so I suggested she ring the endo there and then, who agreed with me, hurrah!).

I was diagnosed hypothyroid back in October 2008, put on 25mcg then 50mcg, then my cycle came back, BFP Feb 09 but MC'd at 5.5 weeks, another BFP in May 09 and this time my thyroid was managed much more carefully, DD arrived safely in January 2010, 6 days overdue but naturally on gas and air with no complications in labour and she weighed 6lb 5oz smile we're now about to start TTC again.

There is LOTS of useful information in this thread which it would be worth you reading through (be an "expert patient" wink).

Just like to say a huge thanks to confused for the links as the antibody information which is very relevant to me, so I am going to book in with the GP after Easter to discuss potential use of steroids/asprin etc.

minipie Fri 06-Apr-12 07:59:10

Thanks blondie! That's really really helpful to hear your story especially as you were also on 50 mcg pre-preg, like me. Most people seem to be on more so it's hard to compare.

you're right obviously, only I can decide whether to self medicate. Ordinarily i wouldn't dream of doing so but just worried at how quickly things can move when it comes to thyroid and I can't get to see a doc till end of the week.

I have now had a look at the nhs clinical guidance website that a previous poster linked to. (couldn't get the site to work last night). It suggests GP should raise thyroxine dose by 30 to 50% immediately while patient is waiting to see endocrinologist.

So, I think I am going to raise mine by 25mcg (like you) until I can see a doc and get some more blood tests.

It'll only be for a few days anyway until I can get to see a doctor and get blood tests done.

Thanks

By the way... on a completely separate note... I have been taking Vit D and folic acid at the same time as my thyroxine. Anyone know if those interfere with its effectiveness? The web seems to say it's just calcium and iron.

minipie Fri 06-Apr-12 08:00:16

forgot to say, very sorry to hear about your mc and many congratulations on your DD!

cakelover75 Fri 06-Apr-12 09:23:37

Hello everyone, this thread has been massively helpful to me.

I was diagnosed with an underacive thyroid after the birth of my first daughter 2 years ago. I was taking 150mcg of levothyroxene until December when they reduced it to 125mcg. Almost as soon as I realised I was pregnant I saw the dr but unfortunately it was a young locum who gave me the wrong advice regarding my booking in appt with the midwife. As a result, I won't be seeing the midwife now till the end of April when I'll be nearly 9 weeks. angry

After reading everyone's experiences on here and listening to that Radio 4 programme last night that someone posted a few weeks ago, I have decided to increase my dosage to 150mcg. It's frustrating that the doctors is closed till TuesdayOn this programme a consultant stated that there was more risk to the baby in under medicating as opposed to over-medicating. This was all I needed to hear. Good luck to us all. smile

frankie3 Fri 06-Apr-12 12:17:02

My TSH was 5.55 while I was pregnant so I don't understand why I was not diagnosed as underactive. I went on to have a successful pregnancy and birth, but wonder if my underactive thyroid could have affected the development of my ds. I am now on 150 mcg of levothyroxine.

tumblebug Fri 06-Apr-12 16:17:52

Hi all, for those struggling to see GP's/ midwives, my GP surgeries have allowed me to request a phone call from my GP the same day, they don't necessarily need to see you to discuss dose change if you feel well.

My last GP referred me quickly to the specialist antenatal clinic - I was seen at 7 weeks, my current GP (different area) was happy to discuss the dose over the phone. As my TSH had been a bit low before conception, we didn't increase the dose immediately this time, just repeated bloods, TSH quickly came up and I am now on a higher dose. My GP seems really confident dealing with my thyroid, I know not all are (there may be one GP in your practice with an interest). I am now being followed up in the antenatal clinic.

I had subclinical hypothyroidism 1st pregnancy, didn't start thyroxine until 14 weeks (TSH was 6, T4 normal, the consultant was only concerned as I had antibodies so not just 'normal for me'). DS seems fine apart from the usual toddler oddities!

Spiritedwolf Fri 06-Apr-12 16:58:17

Hi,

I'm very keen to breastfeed and there has been mention of hypothyroidism affecting milk production. Just want to check that people whose bloods are monitored and are on appropriate doses of levothyroxine are able to breastfeed successfully.

Thanks xx

maples Fri 06-Apr-12 23:29:49

Spirited - very much so - have an oversupply if anything grin

tumblebug Sat 07-Apr-12 10:19:23

Hi spirited, I breastfed for over a year with ds, no problems at all. In that time I stopped thyroxine, nearly went hyperthyroid before went symptomatically hypothyroid (postpartum thyroiditis, may not have noticed very quickly if they weren't monitoring me!), then restarted treatment. None of that seemed to affect milk supply.

cakelover75 Sat 07-Apr-12 10:56:04

Hi spirited, I was unable to breastfeed my daughter but I wasn't diagnosed until she was around 3 months old. It will be interesting to see how I get on this time.

minipie Tue 10-Apr-12 16:09:02

Hi everyone

Does having underactive thyroid restrict your birth choices, does anyone know?

I think I would like to give birth in my hospital's midwife led unit if possible rather than the labour ward. However I am worried I may not be allowed due to being hypothyroid and therefore "high risk". Anyone know the answer?

thanks!

ShellyBobbs Tue 10-Apr-12 16:39:37

Well I took the information from this website Hypothyroidism to my doctors and he thanked me for bringing this to his attention and upped my thyroxine straight away. Next blood test on the 25th so I'll see if it's had an effect.

maples Tue 10-Apr-12 18:46:28

Mini if your thyroid is under control and you are hypo you are LOW risk for labour and should be allowed to use the MLu - I laboured in the pool with DS

maples Tue 10-Apr-12 18:46:44

Shelley v pleased to hear that!

minipie Tue 10-Apr-12 18:48:11

Ah, that's v good to know, thanks maples. Had blood tests today and seeing endocrinologist on Thurs so let's see if the ol' thyroid is under control or not! I really like the idea of a pool birth.

ShellyBobbs Tue 10-Apr-12 19:36:18

Oh Mini, forgot to answer you. I'm having a waterbirth at my maternity unit and it's no problem at all to them.

minipie Tue 10-Apr-12 20:02:28

hooray! smile

Clarella Sun 06-May-12 22:28:43

Hi all, I'd forgotten/ lost this thread since last posting in feb, and wonder if anyone can shed some light/ advise pls.

TSH 2 wks preconception 1.35
Doc raised meds at 4+5 from 125 to 150
(After a little quibbling - one doc said yes, tother said no!)
Had test at booking at 8+3
- results took ages to come back - went to hospital? Nurse at docs was puzzled!
Docs rang on Friday (10 days after test) to say raise by 25 again to 175 - tsh was 5.5
(didn't ask t4, and t4 not been tested for ages!)

Do you think the 5.5 is a problem? Should I ring consultants office, I've since had scan date and initial consultant meeting for 24 th may in 3 weeks - who do you think has over seen this? I sort of feel +25 is not enough, not least as I've put on weight quickly!

Is tsh more of a mc risk or baby development risk? Ie, do I pester again as I've become so used to doing!

Thanks!

ShellyBobbs Wed 09-May-12 12:51:52

How often are you being tested? Currently I am going for tests every 4 weeks, my GP has told me he is happy to do this for the duration of my pregnancy, he even phoned me as soon as my last results were back to say they were all fine and he had left me a copy at reception! He is an extremely good doctor and I think he was mortified that I had to point out the whole hypothyroidism during pregnancy thing.

You really want to aim for your TSH to be 2 or under, this may happen when you up again by 25mcg, I wouldn't really up it any more as you may shoot right over into hyperthyroidism so palpitations, anxiety etc., give the extra 25mcg a chance and see what your results are in 2 weeks. Obviously if you are worried then do discuss it with your GP / Consultant, the risk to baby are always stressed as being to UNTREATED hypothyroidism, but I really do understand your anxiety. (see Tumblebug's results, TSH 6 in previous pregnancy).

Hope you get it sorted Clarella. I still haven't seen a specialist and I was refered 8 weeks ago, thank goodness I know how to deal with it.

Clarella Wed 09-May-12 13:25:37

Thanks Shellybobs - It's sort of working out at every 4 weeks, Im just puzzled the results took so unusually long to come back, 10 days in total.

I'm also being investigated for slapped cheek at mo and off work (****) - honestly usually very fit and healthy! Just back from docs and was told I was not immune to that so spent more time discussing the work situation etc. I don't usually see that doctor - Ive begun to see her simply as she's managing the slapped cheek stuff (and been lovely about it) and she said that only TSH had been done which was just over 5 - she obviously didn't know about the below 2 TSH thing as said only a little over but as I was put up to 175mcg last week I wasnt going to push. I had been querying when to get my next blood test - before meeting the consulant in 2 weeks (so nearly 3 weeks after second upping of 25mg) so that he had blood info, or if he would do the tests - she actually said because Im getting the next slapped cheek blood test in 2 weeks why not get them done at same time... Arghh its so confusing! That could be too soon!?

I think I'll just go ahead and get it then, before I see the consultant and then discuss it all with him/her! I agree I don't want to go any higher at mo, and actually wonder if my T4 has been ok as I usually (sorry tmi) get really constipated, blush and haven't - apart from a day of special K binging!

Im really trying to eat foods with iodine as usual (not crazy stuff just the frequent dairy and eggs and limited fish etc plus the pregnacare which has it) so really hoping the sprout not affected by lack of T4.

I am going to a thyroid foundation meeting in July about thyroid in pregnancy and am putting posters around and about. Its being led by a consultant so will feed back any useful info.

Clarella Wed 09-May-12 13:28:51

Ah yes, Tumblebug's post is reassuring smile, thanks xx

ShellyBobbs Wed 09-May-12 14:53:33

No problem Clarella smile

Yes get the blood test again in 2 weeks, I think it actually takes about 10 days to get into your system but don't quote me on that.

As for results, they are usually back within a couple of days, I know at my surgery it says on it when sent and when results are back, it's actually emailed the same day. I usually ring up 2 days after.

Lucky you with the thyroid meeting, I really don't think I'll get to see the consultant now, I'm signing myself over to Midwife led care at 28 weeks anyway. I did see a obs at my last scan, that was a complete waste of time, 'how are you feeling etc.'.

Yes feedback the info you get there, it will be interesting reading. Good luck smile

Clarella Wed 09-May-12 17:55:21

If anyone is interested it's in newcastle, on a Sat, i'll look up which date and post here.

Thanks Shelley, So I may not actually see a consultant? I have a scan and then right after (presumably if all is well) quote: "An out patient appointment with: consultant (or team member) service: obstetrics (NEW)"

The 'or team member' bit makes me wonder if its a random junior doc!

ShellyBobbs Thu 10-May-12 13:13:58

I don't know Clarella, my hospital is nationally known as crap (Tameside) so I wasn't surprised with the service I got, although the maternity used to be the only good thing about that hospital. My doctor can't even believe that I haven't seen a specialist yet, so I don't know, I'm not due back there now until the end of next month so I really doubt I'll see anyone now it's disgusting really.

Unfortunately Newcastle is a bit far for me, I'm in Manchester smile

Clarella Fri 11-May-12 10:33:21

Shelly, that is bad, good you know so much smile

If anyone else was interested this is the meeting:

Saturday 14 July 2012 9.45am – 12 noon
The Bewick Hall, Level 2
Newcastle City Library
33 New Bridge Street West
Newcastle upon Tyne
(5 minutes walk from Monument Metro)
Programme: "Going through pregnancy when you have a thyroid problem"

Speaker: Dr Jean MacLeod, FRCP, Consultant Physician, University Hospital of North Tees and Hartlepool

For more info and to contact the group (if you want to attend) see:
here

Clarella Mon 28-May-12 09:01:46

Hi sorry to resurrect, I realise many who may have advice may not be about but any advice/ reassurance appreciated!

Basically my latest test at 13 weeks had a tsh of 11.1.

(Pre preg: tsh 1.35, on 125 mcg upped by 25 on bfp at 5 weeks.
At 8 weeks: tsh 5.5 - odd delay of nearly 2 weeks getting results possibly as mw took blood, was upper by 25mcg to 175.)

Saw consultant after lovely scan, he wacked me up to 225. He was trying to be as reassuring as possible and said there's a lot of time left in the pregnancy to support the baby re growth and development but I'm still quite upset and worried. (always get really panicky and low when hypo anyway which hasn't helped).

He did say he'd have gone up 50 at the 8 week one. He's tested for antibodies to see if there's something more going on (i went hypo at 21 when went in pill I believe, it went normal when I came off but then stayed hypo after taking it for a while again when about 23. a doc once commented on antibodies years a go but no more than that)

Does anyone have a similar experience? I'm quite small, not even 9 stone yet at 14 weeks and the massive increase in tsh had concerned me, as do the antibodies.

Thanks in advance

maples Mon 28-May-12 12:08:21

Clarella sorry to hear the tsh has gone up. Fx the extra dose will bring it down fast.

No advice specifically because that didn't happen to me, but I wanted to ask when you are having your next blood test?

maples Mon 28-May-12 12:11:06

I wouldn't worry about that increase btw - not a hcp but it sounds ok if you are aiming to get tsh down to 2. Do you trust the consultant?

Clarella Mon 28-May-12 13:49:14

Hi maples, thanks for your reply. sorry I think this may become an essay! - I'm not bothered taking so much thyroxine if its going to fix me, more about the ongoing massive jump in tsh despite two increases since my bfp - how damaging etc. The consultant has reassured by pointing out what an impact can be positively done from now on but the niggle remains as always! Also what the antibody stuff entails - should I ring to find out results or just wait?

I've another blood test in 3 weeks, and then see the consultant the week after. I think I have to trust him - at least he is doing an antibody screen - throughout I've asked for t4 to be done, and the last gp even requested it but it still wasn't done by the lab - I don't get it?! The consultant said tsh is a much better guideline as more stable.

I suppose my other concern is how much of this has affected my anxiety and mood - I've been off work for 4 weeks in 'quarantine' following some slapped cheek cases (not immune and didn't feel work monitored cases accurately) and steadily the guilt, anxiety and paranoia skyrocketed. I have literally been bonkers, was suspicious of everyone including DH at one point, and then last week was just terribly depressed. Initially I was working from home but found it all too stressful - my worry now is trying to explain to work how it may have been exacerbated by thyroid - ive had a chat with the head explaining everything, touching base and planning for an early return following docs on weds despite my sicknote lasting longer,- but I didn't actually discuss how much thyroid could have impacted on my state of mind with the consultant, though I think it has, which my head asked. thing is I feel I have to show willing and as my class all have severe autism don't want want to leave it till after half term, if doc says its ok.

I have a doc appt for the slapped cheek clearance in weds and might discuss then? Does anyone have experience of 'loss of marbles' with thyroid? I've had it before when hypo but it was a gradual decline - Or is it all just pregnancy? After 5 days on the mega dose now 14 weeks, I feel calmer and more balanced, would that be the case?!

Yup, an essay! Sorry! - just hate it when I can't cope sad and usually caused by my bloody thyroid.

Clarella Mon 28-May-12 13:59:50

Hi maples, thanks for your reply. sorry I think this may become an essay! - I'm not bothered taking so much thyroxine if its going to fix me, more about the ongoing massive jump in tsh despite two increases since my bfp - how damaging etc. The consultant has reassured by pointing out what an impact can be positively done from now on but the niggle remains as always! Also what the antibody stuff entails - should I ring to find out results or just wait?

I've another blood test in 3 weeks, and then see the consultant the week after. I think I have to trust him - at least he is doing an antibody screen - throughout I've asked for t4 to be done, and the last gp even requested it but it still wasn't done by the lab - I don't get it?! The consultant said tsh is a much better guideline as more stable.

I suppose my other concern is how much of this has affected my anxiety and mood - I've been off work for 4 weeks in 'quarantine' following some slapped cheek cases (not immune and didn't feel work monitored cases accurately) and steadily the guilt, anxiety and paranoia skyrocketed. I have literally been bonkers, was suspicious of everyone including DH at one point, and then last week was just terribly depressed. Initially I was working from home but found it all too stressful - my worry now is trying to explain to work how it may have been exacerbated by thyroid - ive had a chat with the head explaining everything, touching base and planning for an early return following docs on weds despite my sicknote lasting longer,- but I didn't actually discuss how much thyroid could have impacted on my state of mind with the consultant, though I think it has, which my head asked. thing is I feel I have to show willing and as my class all have severe autism don't want want to leave it till after half term, if doc says its ok.

I have a doc appt for the slapped cheek clearance in weds and might discuss then? Does anyone have experience of 'loss of marbles' with thyroid? I've had it before when hypo but it was a gradual decline - Or is it all just pregnancy? After 5 days on the mega dose now 14 weeks, I feel calmer and more balanced, would that be the case?!

Yup, an essay! Sorry! - just hate it when I can't cope sad and usually caused by my bloody thyroid.

Clarella Mon 28-May-12 14:00:42

Oh crikey sorry you got two essays there! (blush!)

maples Mon 28-May-12 15:07:13

No need to blush you should have seen my essays when pg

I'm on phone so can't see your whole post at once so I'm going to post a few times to try to reply to most of your points.

1. The mental aspect - yes it is entirely possible your mental state has all been thyroid related. Google an organisation called thyroid mind if you want independent proof. I become very anxious when badly hypo and when I has a tsh of 27 was wrongly put on antidepressants. My endo confirmed it was thyroid - once I started thyroxine my mood stabilised.

2. Fears about the tsh. You have been taking thyroxine and the benefit of that will be channelled by your body to the baby rather than you afaik - my endo told me it is how much thyroxine is in the blood that is most important, not what the tsh is. I would also be very upset, but please try not to worry

Some thanks and un MN hugs

maples Mon 28-May-12 15:08:44

Will post again in a sec but just have some thing to do first

maples Mon 28-May-12 15:20:36

About the appointment time - very pleased to hear you are seeing the consultant so soon. I was going to say you need to be seen in no more than 4 weeks time IMHO.

maples Mon 28-May-12 15:36:15

About the t4 I really think you should push to have it tested next time - mine was always tested in pg though I think they did base the dosage more on the tsh IYSWIM.

Antibodies I would try to find out the result but mine were never done while I was pg

maples Mon 28-May-12 15:37:15

Btw I know you've been pushing for your t4 already - don't want you to think I think you haven't been trying!

maples Mon 28-May-12 15:40:10

Last point for now blush about my essay I would tell the head about the thyroid making you feel very weird if you think it's been affecting your performance at work.

ShellyBobbs Mon 28-May-12 16:28:51

Ditto Maples posts. One christmas I actually thought I had dementia (not joking) because my mind was in that much of a state and I knew that nobody understood what the hell was going on. I was just a mess, crying, didn't want to be around anyone. I had got into such a spiral that I was forgetting to take my tablets and slowly getting worse, my hubby then made sure I had them everyday after my Christmas 'breakdown' and within a week I was back to normal.

maples Mon 28-May-12 16:40:49

It was Xmas for me too Shelley

sad to hear you felt so awful

Clarella Mon 28-May-12 16:43:40

Ah thanks so much maples! That really helps. I rang the hospital and they were great - if the antibodies come back and need treatment i'll get a letter, not back yet. Good news is that when I was tested last Thursday tsh was 9 and t4 16 (tsh was 11 just 4 days before) so it was obviously starting to coming down anyway even without the mega dose!

Yep, was wacked on antidepressants at 20 (now 35) which really disagreed with me before finally being tested for thyroid, and I sometimes wonder if half my anxiety is cos of that horrid experience which, when well, I cleverly erase from my memory! It certainly fuels my worry about all this in pregnancy but I can't knock back a beta blocker as I usually do! I always start to get anxious before I become depressed when it goes under though.

I did have a (scary) chat with my head - technically I'm not off ill, just can't be at work in case of infection so she could have asked me to work elsewhere but I did tell her last week how much the anxiety was affecting me, and today that the thyroid probably was contributing to it, but that id like to get back before half term (even though sicknote extends to Friday). I think its the sensible thing to do as I feel I need to show willing. I have not been able to relax or put 'feet up' as the deputy said at all I've been so low ( i will regret that in the future I know!) To their credit they haven't contacted me (though my manic teaching assistant wad haranging me with all the gory disasters due to me not being there not getting that I really didn't want to know!) The kids have severe autism thus my mega guilt but have to think of my baby now!

Anyway, you don't need to know all this! Thanks so much again. I definately feel brighter so bring on the energy!

maples Mon 28-May-12 16:49:00

Very good news about latest results smile so you are probably on even better numbers now.

Clarella Mon 28-May-12 17:24:14

Oh wow shellybobs, sorry missed post, you poor thing. Sorry to hear that.

its horrid but sort of reassuring to hear others experience it too. I once convinced my self I was bipolar. Last time was bad (tsh 13) a few years ago id look at my then very passive gorgeous bunch of nine autistic 11 year olds who all looked like they needed a nap all day long and struggled with their 'executive function' and problem solving ability and I'd think - "I know exactly how you feel." It was bliss though as they were so laid back but took ages to deal with the depression. I was doing an intensive course on autism that year and decided we definately loose our 'executive function' when hypo - in autistic kids (and adhd or other difficulties) it can lead to intense anxiety, and is like a sort of dementia so no wonder we think we are going loopy.

Oo look what I found: (sorry on HTC)
www.ncbi.nlm.nih.gov/m/pubmed/16212680/

Ok, brain cells definately getting better!

Thanks for the advice peeps xx

maples Mon 28-May-12 17:37:32

Interesting article. Sadly I think my in laws still think I'm unstable sad

Tugstonia Mon 28-May-12 18:36:53

Hi all, can I join in? I was born with hypothyroidism and have taken thyroxine my whole life. When I found out I was pregnant (I'm about 6+4 now) I was on 275 mcg a day (which is a relatively v. high dose). Docs sent me for a blood test and my TSH was 0.1 and T4 was 30, i.e. very overactive. Doctor freaked out and reduced my thyroxine to 175 with a retest in 6 weeks. She kept asking if I was "sure" I was taking 275 - er, yes! Anyway I'm confused because I didn't have any symptoms of being hyper and actually feel really well. I've done some reading and found that there's apparently a natural surge of T4 in the early weeks of pregnancy and worried that the doc might have misinterpreted my results. Anyway the TSH is abnormal so have reduced to 175 and will see what happens at the next test. So my question is, has anyone else who's normally hypo had fluctuating levels during pregnancy and gone hyper, and was everything ok with the pregnancy/baby?
Thanks so much smile

Clarella Mon 28-May-12 18:39:48

Oh maples, I'm sorry. It's the issue society in general has with mind stuff. Im not good at following my own advice, I suppose its remembering everyone is a little unstable at times, and actually, in the case of thyroid it really is a chemical imbalance.(hugs)

If theres antibody stuff going on I'll post back encase anyone else experiences this.

Clarella Mon 28-May-12 18:58:23

Hi tugs, congratulations! don't know much about it but I think yes the tsh does naturally dip but your t4 is quite high, around 21 or 22 is the top range - I don't think there's too much to worry about at the mo as baby is still using its yolk sac I think and from what I've read its a high tsh that causes mc - but could be wrong and others may know more? Again not sure but given things can move fast id reckon a test in 4 weeks would be better.

At booking appt you should be referred onto a consultant who you should meet at the 12 wk scan (though could be 13 or 14 weeks!) But my consultant said there wasn't any reason why I couldn't have seen him earlier (believe me I asked but gps can be tough!) The consultant would probably also agree to drop down but I don't know if they'd drop differently or if they'd test sooner than 6 weeks.

Hope you can get the advice that helps, it cam be frustrating and worrying. Don't know if anything on the nhs cks website would help (clinical evidence) xx

Tugstonia Mon 28-May-12 19:11:05

Thanks so much Clarella! Really appreciate you sharing your knowledge. I'll check out the nhs website. I have my booking appt on 22nd June and scan on 9th July (both AGES away still!) so I'll be just over 12 weeks for the scan. GP said I'd probably have to see a consultant but that was before I got the test results. I think I'll contact GP and try to get an earlier scan, esp. if I'm going to be under consultant care. I don't have a regular consultant anymore after they discharged me 3 years ago back to my GP because my test results were always normal... slightly odd in retrospect. Anyway next blood test should be 4 weeks from now (original test was 2 weeks ago) so we'll see what that says. Early scan would be good though because I am quite worried...
Thanks again xx

Clarella Mon 28-May-12 19:23:37

No problem tugs, though don't know a lot! Tbh its getting the chat with a consultant to check things are ok - and I'd possibly want that blood test in 2 more weeks, (4 in total) but the consultant could confirm that. Worth having a chat with your doc again - were you 'normal' when discharged as in needed no thyroxine? My antibodies are being checked - again don't know much about this area but could cause either hyper or unresponsive thyroid (i think!)

Mind you if you feel ok at the mo possibly all is well. Word of warning - early scans can be difficult to get and may not tell you much, the consultant is the key! They also are only a snapshot of what's happening now. Deffo speak to gp.

Tugstonia Mon 28-May-12 19:53:41

Nope still needed thyroxine (and quite a lot of it), just that all was well and they never had anything new to tell me so figured they could discharge me. Kinda wish I had a consultant now! Going to call my GP tomorrow to discuss and see if I can get an urgent referral to a consultant.
Thanks again smile

Clarella Mon 28-May-12 22:43:39

Let us know how it goes fingers crossed smile

ShellyBobbs Mon 28-May-12 23:03:55

I've still not seen a consultant and I was referred at my booking in appointment 11 weeks ago!

maples Tue 29-May-12 00:25:30

angry Shelley - this is just rubbish sad

Clarella Tue 29-May-12 08:44:05

Shellybobs that is really bad. Are you still getting blood tests?

ShellyBobbs Wed 30-May-12 09:39:57

Oh yes, my doctor is very happy to keep testing me every 4 weeks so between us we seem to know what we are doing smile

maples I wouldn't be surprised if I don't get to see one at all, and once I get to 28 weeks I'm going back to midwife led care anyway (my choice). It's disgusting isn't it.

maples Wed 30-May-12 11:01:19

Oh shelly sad I keep thinking maybe we should do something about this sad should we contact the British thyroid association or something?

maples Wed 30-May-12 11:01:42

Very pleased you are getting the frequent blood tests though

Clarella Wed 30-May-12 23:09:02

The British thy foundation seem to be aware of it (linked to the association) and are trying to spread the message. I've decided to join though the news letters are on the website.

Doc today (reviewing slapped cheek stuff) (also a professor no less - and working in the area the surgery is in leaves me extra impressed!) seemed very relieved the consultant has taken over. Eyes were pretty wide on the 11 and 9! She did say she'd once admitted a lady to hospital with severe dementia only to find it was simply a very hypo thyroid.

Been another slapped cheek case so not allowed back with kids till 20 weeks (summer hols). In a mega dilemma whether to risk the teacher training on Friday. Doc said same risk as sitting in docs surgery, everyone else (inc deputy head) (not the head though!) Seems to think a risk. Argh I can't stand it, me a.d antibodies ain't getting on at the minute!

maples Wed 30-May-12 23:55:02

If it will worry you Clarella maybe don't risk it?

Hopefully you'll feel much better when the thyroid levels calm down.

Clarella Thu 31-May-12 09:40:49

Yes, that's the way I'm going. Thanks, silly to question it. I have to say my state of mind is so so so much calmer - my worry is more pragmatic weighing up of outcomes, no panic, no tears, nothing! But essentially so many things have ended up the worst case scenario, wasn't immune, crazy thyroid, it makes me think don't risk, and the things that have been best case scenario ie wasn't infected, baby appears healthy, are good reasons to consider taking worst case scenario seriously to keep everything that way!

Also, didn't think I was massively bunged up (sorry tmi, but a major bench mark for me!) but I must have been - swinging very much the other way now, though my obsessive diet of all things that help in that dept, esp yesterday, could have contributed! Didn't have too feel too bad about the Scone munching last night! Though I guess i'll need to keep an eye on that. Just mad how quickly things seem to adjust.

chubbychipmonk Fri 01-Jun-12 20:01:32

Yep, have had problems with my thyroid since I was 16. It was over active so had partial thyroidectomy & for last 10 years I've been underactive & been on 125 mcg thyroxine daily. I too was worried after googling horror stories, fell pregnant with my son after coming off pill 2 months earlier & am now 6 weeks pregnant again with baby number 2. Got monitored all throughout pregnancy and blood tests to make sure levels were normally but had no probs whatsoever. As long as you keep taking your thyroxine you'll be fine! Good luck wink

Tronbear Thu 21-Jun-12 16:19:50

Hello,

I have very mild sub-clinical hypothyroidism which has been unchanging and stable for years and I am hoping to start ttc as soon as possible. However my doctor says I should start taking thyroxine before ttc, even though if I wasn't considering pregnancy I would not be prescribed the drug (I have absolutely no symptoms of hypothyroid).

I am very anxious about taking the drug, I react badly to even a painkiller or antihistamine and taking a drug during pregnancy is a difficult thing for me to consider. I am aware of the risks of having an elevated TSH, especially during the first trimester and am beginning to resolve myself to the idea of taking thyroxine just for the ttc period and pregnancy, however I am very upset about this.

Could anyone here tell me about side effects they have from thyroxine (not so much symptoms worsening or improving as I have no symptoms, just other side effects).

Thanks so much!

Hi tron - thyroxine isn't a drug as such, it's something your body should produce anyway so it's like taking iron when you're anaemic iykwim? You'll only get "sideeffects" if you take too much and go hyper; you get things like shortness of breath, palpitations and sleeplessness. But I'd expect a GP to monitor you carefully if/when they medicate you. Hth x

PS, do you know what your TSH is? To give it some context, my consultant wants mine to be between 0.5 and 2.5 during my pregnancy smile

Ladies, I've been TSH 1.5 for the past two years, nice and stable on 150mcg. My last blood test showed I was TSH 0.27 shock
I need to phone the consultant to discuss it, but I was wondering whether anyone else has gone hyper during pregnancy?

Tugstonia Thu 21-Jun-12 17:35:18

Fluffy yes I have gone hyper since I've been pg. Have congenital hypothyroidism and my dosage has gradually crept up to 275mcg. When I found out I was pg (am 9+6 now) I had a routine blood test because I hadn't had one in a while and GP phoned me to say my TSH was 0.1 and T4 was 30 and told me to reduce to 175mcg immediately and retest in 6 weeks. I've not been under consultant care for about 4 years since they discharged me to my GP (because everything seemed to be fine...) but wishing I did have a consultant to call now. I didn't have any symptoms of being hyper at all and in fact have felt very well. All v weird. I've got my next test next week and my booking in tomorrow and will talk to mw about being referred to a consultant for my ante- and post-natal care.
Would love to hear more about what your consultant has to say about it all!

Clarella Thu 21-Jun-12 17:43:16

Hi have literally just had my test results results and seen the doc / consultant at the hospital today - 4 weeks ago at 13 wks my tsh was 11 and t4 16, I was on 175 after 2 dose increases, and was put up to 225 - this week my Tsh is 0.1 and my thyroxine is 21.... they were initially going to drop me to 200 but I've only just begun to feel a bit brighter and certainly not overly medicated, which I've experienced before. They were therefore happy to keep me at that - I if course worry a bit its too high but also don't want to swing down again!

I honestly don't know if I'm doing the right thing, I think.its fine for baby, its more that it could damage/dampen thyroid too much?

Tron, you may not notice much of anything except more energy but its vitally important you do get your Tsh down as there is a higher risk of problems conceiving, mc and also problems with baby later on if you don't take it. As said above, its not a drug, its a replacement hormone, and there has been lots of research done in the area of treating subclinical women ttc which says taking thyroxine is necessary. When slightly over medicated I've sweated a lot at night, slept very little indeed, and basically felt like superwoman. There is a possibility your thyroid may be clinical after the pregnancy though, due to the pregnancy.

Does anyone think perhaps I should speak to the consultant again and drop down a little?

Clarella Thu 21-Jun-12 17:47:07

Cross posted tugs, sorry - I suppose my t4 was in range unlike yours but the blood test in the early morn and I didn't take my meds that day till afterwards - argh!

I don't feel hyper at all except for a brief spell on Monday morning while swimming which is went the test was (before swimming that is!)

Clarella Thu 21-Jun-12 17:51:18

Oh and mini rant - the antibody test wasn't done when the consultant asked for it Grrrrr, getting it next time but still grrrr. Anyone know about that?! I know there are different antibodies.

Clarella Fri 22-Jun-12 09:48:22

Wow amazing midwife at hospital - understood my concern and recommended speaking to the gp about my concerns and getting antibody test now. She said a relative has graves and has all sorts of ongoing issues despite being treated and the thyroid is a 'funny little thing.'

Found an exceptionally good nhs guideline from Scotland which seems pretty comprehensive (though my t3 is never done!) But the tsh seems to be very low in first trimester if that helps previous questions. - though not in the second trimester which worries me again! I don't know if this link will work and only on a touch phone.

www.google.co.uk/url?sa=t&source=web&cd=1&ved=0CFQQFjAA&url=http%3A%2F%2Fwww.nhslothian.scot.nhs.uk%2FServices%2FA-Z%2FDiabetesService%2FInformationHealthProfessionals%2FMUHEndocrineManagementProtocols%2F007b_Thyroid%2520Function%2520Testing%2520in%2520Primary%2520Care%2520Pregnancy%2520Guidance%252017.10.08.pdf&ei=zSnkT4joBsTs8QPEhrTcCg&usg=AFQjCNFnWFLy5p7-GVcnydGWT_w_zirsOA

Clarella Fri 22-Jun-12 09:49:11

The link above downloads instantly so only do if you want to download.

quickchat Fri 22-Jun-12 10:28:15

This info worries me. I am 30 weeks with DC3. I was diagnosed after DC2. Ive always felt awful, my levels were all over the place for 2 years and ive felt very wiped for last 4 weeks in particular. My doctor is worse than useless.

They only checked me every trimester and it was only when I was finally sent to a consultant last week that they found im severely anemic and the level you were talking about leoniedelt was 14. TSH was fine but I hear what you are saying about it being unreliable.

So if I have spent my PG with such a low level then going by what I have read I can expect a baby with low IQ, possible birth defects or thyroidism from birth sad. Not to mention the non starting birth which ive had 2 of already.

Im really worried now sad.

Clarella Fri 22-Jun-12 15:48:25

Oh dear quickchat, please don't worry. What is your tsh? I believe it generally is a good indication as although it can waiver a bit it shows the general average levels if t4 - which can vary - that the pituitary gland is responding to. Your t4 is in the middle range. Mine was 16 when the tsh was 11. I believe, though very worried at the time, that there was enough t4 for baby but not for me, which may be your case. I would talk to the consultant if possible again about your worries - mine were certainly more concerned about the tsh which messes with the baby's system. Affected iq is extremely minimal mostly in women who are subclinical - not being treated with any thyroxine and not known about. This is why they are considering whether its worth screening all pregnant women.

Re antibodies test: I rang the docs who had the letter saying it had been done, but hadn't so she rang the hospital back (why the midwife didn't just knock on the consultants door I don't know!) and consultant said its not an issue till 23 weeks if atall and he'd want it done before then - should have been done at scan as he requested but that's why it wasn't an issue at the hospital. Not sure if had to be done again or not but I had it done today, didn't have to though. I think it was originally more to check why the tsh had gone so high. No idea if this helps anyone but I feel that hearing other experiences helps!

Tugs you should be referred as standard now you're pregnant, make sure you ask the MW - and thanks for the reassurance! smile

Clarella make sure they put on your blood form that you're pregnant - in my trust, the blood lab can choose not to run antibodies or fT4 if your TSH looks fine, but if you state you're pregnant they will make sure to do it.

Quickchat the baby should have its own functioning thyroid by 12ish weeks, so there will be no harm to it from high TSH levels now; however, having a high TSH in Tri3 apparently can affect your milk production post birth, so you still need to tackle it. Good luck smile

Clarella Fri 22-Jun-12 21:45:35

Hi fluffy, that is exactly what I've discovered and now realise. I will be breathing down nurses neck in future! I always get a computer results print out also.

On the antibody test (which I think is more of an issue in graves etc?) - the reason 2 nurses had failed to do it at 12 wk scan and last Monday (under the consultants watch) was because its not on the printed blood bag sheet - it has to be printed off on a sticker from another online thing. Even the gp practice nurse has to call the lab to work out how to do it.

I know now its not an issue but never know what is or not!

nannyof3 Fri 22-Jun-12 22:07:55

My sister has this and her doctor didn't look after her properly (change her medication) and she miscarried sad

But after that the hospital took over her care, and 3 weeks ago, she gave birth to a healthy baby girl smile

Tugstonia Sat 23-Jun-12 07:32:46

Thanks fluffy. Had my booking in yesterday and MW referred me to an obstetric consultant who I'm seeing 2 days after scan in a couple of weeks so feeling a bit better about it.

Having said that I've woken up with v mild cramps and brown discharge but trying not to panic...

Clarella Mon 25-Jun-12 10:40:00

Hope you're ok tugs ?

Tugstonia Mon 25-Jun-12 11:32:05

Yes thank you, sorry to leave such an ominous post there! After the longest weekend of my life went to the EPU this morning and had an internal scan and all is ok smile No explanation for it but mw just said "it happens". Phew!

Clarella Mon 25-Jun-12 12:48:03

Ah that's good smile

Tugstonia Thu 05-Jul-12 19:02:47

Hi all
So I had my repeat test results back, and I'm now hypo again (just). The MW ones said TSH was 4.2, which is the high end of normal, and TFT was 14.2. The GP ordered ones 6 days later were TSH 7.3 and TFT 15. Can they really change that quickly so fast?? I guess they can. Anyway GP has put me up to 200mcg from 175 (pre-preg I was on 275) and will retest in 6 weeks again. Am seeing obstetric consultant next week after my scan so will see what he/she has to say as well. Hoping that having reduced my dose so much so early in pregnancy isn't going to do any harm to my little one but no point worrying about it I suppose.

Tugs your TSH can be quite changeable depending on time of day etc I think so it could just be natural fluxuations?

however my endo & obs consultant told me they use a tighter range during pregnancy - TSH should be 0.5-2.5. It'd be worth checking this with yours when you see him/her. Hth.

Btw ladies I've also just discovered that gaviscon stops the absorption of thyroxine so be careful not to take it too close together!

Clarella Sat 07-Jul-12 12:22:36

Hi tugs,

Yes my tsh changed from 11 to 9 in 3 days but the first was done first thing in the morn, the second was in the afternoon at the hospital and I think I may have read somewhere it changes by about 3 points over the day (highest am) but could be wrong so don't quote me!

How many weeks,are you again? Mine flew up at around 10 weeks and I've wondered if it was due to an extra surge of estrogen around then which can interfere with things.

Thanks fluffy, i'd wondered about gaviscon due to calcuim in it, luckily tended to need later on! And second what you say about ranges in pregnancy.

I'm going to the local British thyroid foundation meeting on pregnancy next sat ( I think the date is wrong in the website as today!) So making a list of qs! There's a consultant there from hartlepool.

Some i'd thought of were - does tsh change during day, does estrogen inhibit the hormones (eg in the pill as well as preg as I became hypo when started pill), and would my body have made sure all the thyroxine had gone to the baby when I was getting low!

Also - why is it so hard to get the labs to do t4 even when it says pregnant and is requested (my doctor told me they are currently a law unto themselves) and what are the trimester specific ranges?
And - would stress exacerbate/affect it as I was really stressed by slapped cheek outbreak at school and finding out I wasn't immune around the time my thyroid went cuckoo!

Any other questions?!

DianaE0711 Mon 09-Jul-12 19:26:56

I will post my full story when I can, but briefly I had a miscarriage last week at 10 weeks, despite battling with GP for tests I never had any. I have just got back from Doctors after requesting a thyroxine test at EPU during miscarriage and my TSH levels are 41.

This is a great thread and I so hope that anyone with hypothyroid gets the tests you need, please don't stop battling, I wish I had fought harder.

Clarella Tue 10-Jul-12 08:43:24

Oh Diana, that is soooo sad, I am so sorry and extremely shocked for you. What utter, utter negligence - a simple bloody blood test and having the nouce to simply check the guidelines, or even just call the hospital. I am so sad and cross for you. Huge hugs xx

Tugstonia Wed 11-Jul-12 10:25:42

Diana I'm so, so sorry to hear that, and absolutely furious on your behalf. It's outrageous that you didn't have a test sooner. Hope you're doing ok, sending you lots of hugs xxx

Clarella it's fantastic you're going to the BTF meeting and thanks for asking those q's. I'd be very interested in the oestrogen links as well. All the many, many years I was on the pill my thyroxine dosage just went up and up, and then when I came off the pill it went hyper/loopyloo.

The management of thyroid problems in pregnancy seems to be so random and very much dependent on where you live, could you pls ask them if there is any kind of national protocol on how it should be managed and if not, why not? Diana's experience is a tragic example of woeful understanding of some doctors of the importance of healthy thyroid function in pregnancy and it has to be sorted out.

I'm seeing the obstetric consultant this arvo who I'm hoping will have a clue about thyroid and if not will ask to see an endo consultant. Will ask him/her about trimester-specific ranges as well.

Clarella Wed 11-Jul-12 11:20:50

I am still cross about your experiences Diana.

As far as I am aware the protocol is on the NHS website: www.cks.nhs.uk/hypothyroidism#481050006 which doctors should be following and came about following review of recent research, all of which is listed on this page. Its simply a lack of knowledge. I only heard about it via radio 4.

The BTF funded recent research into this area (a small local study in Leicestershire) and found "65% of the seventy GPs who replied had no knowledge of any guidelines. Only a small percentage was aware of the target values for TFTs during pregnancy and when thyroxine doses should be changed. Nearly half said they would leave monitoring and changes of thyroxine dose to the Endocrine Antenatal clinic – a worry given the late referral to this service." (ie after 12 weeks and past the crucial time) The BTF are the charity directly linked to the british thyroid association, which all the main top uk consultants are apart of.

imo thyroid problems are a bit like diabetes in very slow motion. consequently the panic to manage is less urgent but i feel as equally important to the overall health of the patient. as we can struggle on (and many do) its simply not seen as such a fuss. It also makes you rather hypochondriachic which i hate, but you just have to keep trying to work out what's wrong, and in this case, the lack of knowledge is frustrating. I also can't help wondering if there's a difference in the fact that its mostly women suffering (and generally just get on an suffer) and fewer men experiencing these issues. (dont like thinking like that but it's hard not to!)

that reminds me i actually need to join the BTF properly!

Diana please lodge a complaint against your GP - this is the only way your GP's procedure will be changed and the importance of thyroid testing can be better understood imvho.

Clarella Wed 11-Jul-12 11:33:48
RainDancer Wed 11-Jul-12 12:11:37

Diana I'm very sorry to hear your sad news. A similar thing happened to me with my first pregnancy. I had not long been disagnosed with Hasimotos disease (but had obviously had it for a long time) and so had not got a handle on my levels, nor really knew anything about thyroid problems. When I found out I was pregnant I went to the GP who said he didn't need to do anything about my thyroid "It will all be sorted out much later in pregnancy". I insisted on having a blood test, which he wasn't happy with, but agreed to. My TSH levels were too high (but I didn't know that then - and I foolishly thought he would know best). He agreed to increased my thyroxine dose but only marginally which clearly wasn't enough. I had a missed miscarriage at 10 weeks and, although it could have been for any number of reasons, am sure it was linked to my thyroid. Unfortunately, like you, I have had to learn the hard way and have now taken matters into my own hands. Am now 19 weeks pregnant and basically told the GP what I wanted him to put my thyroxine levels up to and have been marching in there once a month to insist on blood tests to check my levels independently. He, incidentally, still doesn't seem to have a clue, but I have ben so insistent he has just agreed! Despite the consultant saying, when i had my mmc, that my levels would need to be monitored by an endo this time around I have not heard anything about an endo appointment despite asking everyone when I will hear. It always seems to be someobody elses job. I am, shocked how little care is taken in the first 12 weeks of pregnancy when clearly this is the crucial time. There seems to be an attitude of not spending any resource in early pregnancy and it is pure luck if you can get to 12 weeks safely. I think a lot of miscarriages would probably be avoided for the sake of some inexpensive testing and monitoring at an early stage. I have an appointement with my consultant next week and hope to get a referral to the endo then, but really still feel it is too little too late. I have the ability to do my own research and try and monitor the sitaution myself, but many women do not and it is a tragedy that these women are being failed on such a simple issue. I wish you lots of luck for the future.

RainDancer Wed 11-Jul-12 12:14:12

I meant Hashimotos of course.

Tugstonia Wed 11-Jul-12 12:46:22

Rain I'm so sorry to read about your previous mmc. Well done you for being so insistent on getting the proper tests this time round. Your GP sounds utterly useless. Keep pushing for the endo appt.

It seems insane that we don't get referred to the antenatal endo/thryoid clinic until second trimester when it's the first that's so crucial. Makes me so mad!

Thanks for those links clarella - v interesting reading. I'm feeling quite worried about my GP having reduced my dosage so drastically in the first trimester, even if I was officially "hyper", given that the recommendation is to increase thyroxine by 30-50% during pregnancy. Hope to god it didn't do my baby any harm. Will quiz the consultant this arvo and report back.

Clarella Wed 11-Jul-12 14:18:50

tugs I understand your worry totally. I don't know if it helps but when I asked the (obs) consultant outright 'will my baby have been affected' and explained I teach in special school (when tsh was 11 but id had no idea what t4 was as labs seemed to just not do them even when doc requested) he said we're definately not talking sen at all, a few iq precentage points at most and IF AT ALL, though of course I worry about the baby's thyroid. He also said theres a lot of time to go, meaning that the brain etc continues to develop throughout pregnancy. Teaching in an sen school I'm also so aware of both all the other things that affect development plus how much early experiences form the continually developing brain from 0-3. However the anxiety is horrendous and totally uneccessary plus the fact that being hypo can be horrid too.

From what I understand (looking at links to the research in that nhs website) The worst damage is definately if deficient in iodine, which is quite hard in this country and as previous posters have sadly experienced the wildly raised tsh. My cousin co-incidently researches iodine and said you can easily get enough with 3 daily portions of dairy and the amount of oily fish allowed or pregnacare plus a couple of portions of dairy a day. (never take seaweed supplements, too strong plus may contain high mercury levels)

rain - totally shocked again at the lack of care, so sorry to hear of your experiences. I'm very impressed at how much you have taken control but equally even on previous guidelines you should have seen a consultant by now. I would/have find it extremely difficult to question the docs and find I have to cross ref constantly - blood tests have been the main headache but as my doc admitted that's partly down to the labs and the way the forms are filled in - it must say pregnant and how many weeks.
Apparently sticking the hospital mrn sticker on helps - the doc from the hospital gave me a blood test bag with it on to take to the docs, which my doctor was impressed by and said it might have more clout. might be worth taking to blood tests and asking them to stick on?

Hugs all round x

Tugstonia Wed 11-Jul-12 15:19:53

Thanks Clarella that does really help. I asked my obs doctor just now if the baby could have been damaged because my dosage reduced so much in the 1st trimester and he just shrugged and said there's no way of knowing for sure and that's why they do so many tests and scans etc... Hmm. So hearing your doc's more detailed response is great. Also v interesting about iodine.

I was diagnosed and started on thyroxine when I was just 10 days old and the doctors predicted doom and gloom in terms of my IQ and mental development. But I don't and have never had any such problems, which goes to show that with treatment and monitoring it can all work out fine smile

So I'm up to 200 mcg now, having a repeat blood test (apparently done in a lab that uses pregnancy ranges) in 2 weeks and another consultant appt in 4 weeks when they'll see what's happening and whether or not to adjust dosage and if I need to be referred to an endo. Apparently I also get extra scans at 28 weeks and 36 weeks, in addition to the 20 week and 32 week ones (32 week is because my hospital is doing a big research project on pregnancy, don't think it's usual to have a 32 week one).

Clarella Wed 11-Jul-12 15:40:29

It sounds like they are keeping and eye on you tugs and the extra scans are reassuring - i'm not actually sure im getting any more or not. I sort of feel that i am having to keep an eye on everything and it's not very organised! and excellent to hear that you've had no problems through life! (20 wk scan tomorrow yikes!)

Do you know what your T4 ranges were earlier on in preg - when my tsh was 11, they tested a few days later in the afternoon it was 9 (it can vary a little) but the t4 was 16 (range 9.5-21.5 on my test) - which i think is actually not too bad though not great. so I try to tell myself that baby probably had been getting enough but not me, and in reality my dose had been upped by around 40/45% by 10weeks (125 to 175) which might be why they did the anitibody test (though every other doctor since has looked quizzical about why that was done!) my thyroxine is 225 now and i feel good but not over - another test tomorrow.

oh and the whole 'some foods block iodine goitrogenetic stuff' is rubbish according to my cousin, (with a phd) it's only in countries with a particular regular staple diet like cassova (sp?) that experience these problems. And mackerel is best iodine fish (though watch your intake when preggo!) She's currently doing a study into seaweed supplements and also one soon on iodine levels in new mothers and babies.

I just feel knowledge is power! (and helps us feel more in control!)

Clarella Sat 14-Jul-12 15:23:40

Hi all,

Went to the btf meeting and it was excellent and exceptionally reassuring!!

I will post a list of key things that were discussed later as want to squeeze in a quick swim, but there was a strong message that you do have a legal right to ask for a referral either to an obstetrician or endocrinologist for a second opinion even if for reassurance. If your experience does not match what i'll post here later (though basically what is on the cks nhs link above) I would definately seek second opinions via doctors and/or push to be referred. It's difficult (and you feel like a pain in the bum) but worth it.

Clarella Sun 15-Jul-12 18:48:12

Ok basic summary:

Consultant thinks routine screening in early pregnancy should be offered. (I doubt this will happen soon) however as its not the key linked conditions that make a problem with thyroid more likely are type 1 diabetes, vitilago and pernicious anemia. if these are in family can be more likely to develop thyroid issues. Obviously if a family history of thyroid this is also a risk.

Preparation pre-pregnancy is the key. Need to explain to doctors that you wish to conceive as tsh must be below 2. Not borderline! (she hates 'borderline!') Recommended a couple let things settle for 3 months after a change.

Vitamins: folic acid, iodine and vit d. (she privately recommended a couple take pregnacare, and its the only one I've found with iodine)

As soon as pregnancy confirmed dose must go up (i assume the 30-50% recommended on nhs). She'd prefer mums to do this but recognised some docs might prefer positive preg test. Her overwhelming opinion was slightly over medicating is better than under - docs do worry about this. However she felt that my 0.1 tsh was fine for the necessary period. Thyroid cancer patients need the tsh completely suppressed.

First trimester is about managing thyroxine for main structures of midline, second trimester is the brain, third is growth. However it is important to remember that the body channels everything to the baby so seemingly scary readings of tsh around 10, 11 14 etc actually will have had enough t4 for baby, maybe not mum. (tugs, thought of you here, diana sadly explains your loss) Tsh takes a while to change too, so a delay in change can show up, when t4 is ok. Didn't say estrogen interferes, its more to to with hgc. Consequently t4 tests must be done but she agreed this could be a nightmare. (as can asking for results sometimes)

Baby must have t4, t3 medications do not work for baby.

There is a post delivery wobble (as with all mums) but she likes to leave the dose stable for around 6 weeks before dropping, as seems to be stated on nhs guidelines. It doesn't hurt to do it for this short period. However she did say that as my dose went up so much I may need to drop in steps slowly after birth or even before as I may find I get palpitations nearer the end. Baby relies on mums thyroid till around 23-26 weeks, so a little while later I may be on too much. I'm unlikely to go back to previous levels.Obviously everyone is very different so you need to be aware of what your levels were and how you felt etc.

The pill makes your body need more thyroxine - I didn't take it before but she didn't feel it causes hypothyroidism, I was probably going just to get it anyway. I wonder therefore if I was a little subclinical. Stress can affect Hypothyroidism from the pov that it might affect stomach and digestion and so how t4 is absorbed - change in diet, puking etc as in early preg could be a factor alongside all the raging hormones.

Hyperthyroidism causes terrible hyperemisis, hypo not so much unless that's just you!

She tests for celiac disease in mum after birth - can be a linked condition. She only found it once but something to think about.

One extra thing that may explain my personal crazy tsh is that Teva withdrew their 100mg thyroxine in Feb/march as it caused a wobble when people changed to other brands. I've wondered this as was on Teva till 13 weeks. A girl at the meeting who's had a partial thyroidectomy and on 125 mg found her tsh went from 4 to 2 when she changed. Possibly anecdotal adding of 2 and 2 making 5 but I was also on this and tsh didn't respond in way was expected. - I found this out from btf website so worth a quick check from time to time.

Not very brief or basic but a 2 hour meeting crammed on to a mn thread! Hope it helps anyone in future Xxx

Clarella Sun 15-Jul-12 18:50:25

And yes, internet and Dr Google very bad. And I hasten to add that this is obviously my retelling of a meeting, best seek and take proper medical advice - and as said before, push for consultant referral if in doubt. X

Tugstonia Thu 19-Jul-12 10:08:08

Thanks so much for this Clarella! Really, really great info. V interesting about possible coeliac disease link as well. thank you! xx

minipie Thu 19-Jul-12 12:10:48

The pill makes your body need more thyroxine

Didn't know that clarella - that could be the explanation for me I suspect.

By the way, I am seeing my thyroid consultant this afternoon, so let me know if anyone has any questions they want me to ask grin

Chestnut99 Thu 19-Jul-12 15:11:20

Just a quick comment re Teva 100mcg pills - they were withdrawn in the Spring because of a manufacturing fault which meant they did not actually contain 100 mcg of thyroxine but less than that (some apparently had zero thyroxine content). The problem only affected the 100 mcg pills and only Teva brand. Your TSH levels will have gone up if you were taking the faulty pills (I was and mine did) and then back down again once you switched (mine did). I was pregnant when this happened to me - TSH levels went up to nearly 4 and my doc likes to keep it suppressed at below 2 in pregnancy, but it was only short term (max a month) and he didn't suggest it could have caused any problem for the baby.

boardblonde Thu 19-Jul-12 18:45:12

Is anyone taking both T3 (liothyronine) & T4(thyroxine)? I noticed in Clarella's notes below that T3 doesn't benefit the baby. I'm assuming though my body will ensure the baby gets enough of the T4 I'm taking? Should I look into this with my GP, although he is pretty crap and recently told me to stop obsessing about my Thyroid blood levels, which are fine my last TSH was 0.69.

Tronbear Fri 20-Jul-12 12:53:41

Hello. Clarella your very helpful details from your consultant match mine except he is less worried about TSH being under 2, in fact he is aiming for just over 2 for me.
I started on 25Mcg of Thyroxine three days ago (last tests were TSH 5.7 and FT4 14, which is pretty much what my levels have been for the past 8 years or so give or take +/-2), I increase the dose to 50mcg in 2 weeks. Since I have no symptoms I would definitely not be taking Thyroxine if I wasn't about to TTC.
This is really tough for me and had been a really hard decision - one which I am not in anyway comfortable with, I am the kind of person who never takes a painkiller and overreacts to a cup of coffee (very annoying!). I already have shortness of breath from the tablets, but I also had a panic attack yesterday about the whole thing - I just don't know if I can do it. The decision to have a child is quite new for me (despite being 34) and I have to say this has almost ruined it. I resent it before I have even started.
I know this seems to be different than most people on here feel, but support and reassurance would be really great!

mrsc81 Fri 20-Jul-12 20:38:17

Im approx 4 wks 2 days pregnant and have already been to my gp thanks to this thread.. I have been given a blood test form and a midwife appt in 2 wks time, im just wondering if this means i will also get an early scan as i will be having my first midwife appt at 6wks. Ive also been told i will have consultant led care. Any of you ladies had a scan earlier than 12 wks?

minipie Fri 20-Jul-12 20:45:12

I have mrsc but because of bleeding not thyroid. I don't think they do an early scan just because of thyroid. Congratulations!

mrsc81 Fri 20-Jul-12 21:48:06

Thanks! i had read somewhere else that you get more scans than normal to check growth as can be affected by thyroid? Is this not right then?

minipie Fri 20-Jul-12 21:54:02

Yes that is right! but they are later on - I have one about 32 weeks.

mrsc81 Fri 20-Jul-12 21:57:41

oh ok thanks x

Clarella Sat 21-Jul-12 01:11:13

Chestnut - yes I was on teva and had been for a,while. Wondering then if that was the problem and if then the massive dose increase (ie stronger stable brand) was bad. Still, see consultant on weds. Tbh, until recently a tsh of 4 would have been considered normal. I still think the doc who saw my tsh of 5.5 at 8 weeks and said up by 25 mg was going for a level of 4 rather than below 2 (consultant felt should have been 50)

Board - I worried about posting all this stuff and am only repeating what consultant said in her talk. I imagine if you are on both that's ok but maybe call someone at the hospital? (im obsessing over >0.05 despite what she said!) She was quite specific about that though, I.believe t4 is converted to t3 normally (so in baby) but some people just don't manage to do it so take t3.

Tron, I do understand your concern - good that you've been picked up. I felt like that aged 20 when first getting diagnosed following being pumped full of antidepressants which I reacted to for a year as they thought it was that. Hated pills. As the thyroid swells to make more thyroxine in pregnancy (but yours wont) you're just taking the extra needed bit for baby. Possibly aiming for 2 as you're only just going on it at such a low dose? (an example of being careful about what you read on the internet, as I say did worry about retelling the above stuff.) I would keep in touch with the consultant about how you feel to be safe.

Congratulations Mrsc81! Yeay! Double check they are testing t4 as well if possible when blood is done and recording how many weeks on the blood test form (helps to help lab in my experience) Tsh is main one but its helpful/reassuring to know t4 (though technically should just be flipping done!) Try to find out what the results were to, I'm finding it useful to know when I talk to different docs/consultants. My first scan was 13 wks. I don't actually know if there will be more scans for me yet - I'm going to find out lots more about what to expect the other end of preggo next weds cos I really may have to go off earlier due to very physical job teaching special needs children, often stressful due to their meltdowns plus ofsted any day. I don't want to but we don't get many breaks and when they are in distress/angry we just stop everything to help them which can take a full day. Despite being at optimum thyroid levels (possibly too much!) I've found an end of term week back at work bloody tiring at 22 weeks. (though notice its nearly 1 am ... where the hell is DH?!)

I saw my doc re the obvious effect of the rollercoasting levels on my sanity plus other stuff and she did comment that in her opinion they aim for 2/3 now for everyone not preg and most people take in evening. I don't as have always felt I know my routine and that's the main thing plus too many late hammered party nights forgetting to take not good idea! but believe many people do. Don't want to change stuff at mo but may try in future.

Re coeliac disease - hasten to add consultant said she'd only found it once but on the coeliac UK support website they do say there can be links. I very much hope NOT to have it as I love my cake and sometimes only pasta will do! Didn't know it can be asymptomatic. (But remember kids, internet info can be rubbish and double check anything with a professional please!)

Night night

Clarella Sat 21-Jul-12 08:07:41

Hi sleepless night just being down about whole bloody mess with stuff at work (theyve handled stuff badly) and the thyroid crap. More than ever think its that teva thing and getting me wound up again.

Was thinking about your situation again tron. It's possible (dont know for sure) that being subclinical you may go on to develop a level of hypothyroidism at any point in the future as well as a larger than usual 'postnatal wobble'. My mother developed hypothyroidism during the menopause, I suspect both she and i we're subclinical thinking about symptoms in the past. ( though we are both slim) So in many ways it is good to be being monitored and treated now when they know there will be an issue.

Unfortunately there really is a link with psychological effects as well as physiological effects - you may be adapting to the slight increase in metabolism and I really have noticed the effects mentally and physically in both states. While I was off work but at the highest levels I had no panic and only noticed occasional palpitations initially. I do seem to be sensitive to certain types of stress (always a mixture of worrying about thyroid due to past difficulties and coping with very demanding job) the minute I've had anything to fear (going back to work and a very difficult and unsympathetic boss) panic has exploded. It was literally 0 to 60 over night. I absolutely needed to know how it would be to avoid a worse state in September, and tbh the only factor is the work stress. So in your case I know you actively worry about taking the meds, which will be a factor in your panic (simply from my experience). I actually experience panic attacks when beginning to go under as that is my extreme fear due to not coping in past experiences.

Does that make sense? Do tell me to bugger off if that's not the issue at all - and am only reflecting on my experience as I've observed it. I actually take beta blockers full time normally as they just stop the panic if heading in either direction (which happens so regularly I am wondering about something else going on eg coeliac --though it better bloody not be as I usually poo poo all this gluten free crap unless your are really suffering from a genuine condition--)

Perhaps time to go to preg go yoga to calm down!

Clarella Sat 21-Jul-12 08:13:58

Ps yes, this whole thing plus the slapped check carry on is ruining the experience of pregnancy for me and I'm conscious that Im not really bonding with baby due to needing to regularly treat the whole thing like its job or research project. But I've been referred for cbt which helped a lot last time, (under a psychiatrist, not just counselling).

-- clarella step away from mums net!--- looking forward to having a bubba and no bloody time to mull over this crap!

boardblonde Sat 21-Jul-12 08:29:25

No worries Clarella. I forgot that last time I was pregnant (mc in nov last year) my GP spoke to a consultant who knew what I was on and didn't say anything. He also didn't think my meds needed to be increased. As my TSH is quite low I'm not too worried as I'm probably on a bit too much so it will level as I get further on. Have my midwife appt in 3 weeks so will see what it shows.
You sound like me a few years ago, I suffered with severe anxiety around work. I took beta blockers too but ended back on antidepressants as well. It was CBT that helped me change for good. I still get anxiety now but I can cope so much better. I'm sure my thyroid sputtering in and out over the years hasn't helped my moods either.

Clarella Sat 21-Jul-12 10:53:18

Ah that's good, hope it goes well. So sorry to hear about your mc, hope all goes well this time. Good you were able to battle previous anxiety and feel more confidentbabout it. Its such a peculiar and subtle condition/ disease, i have periods of my life where i forget i even have it. People comment " you dont look like you have that" In between wobbles I'm an extremely successful, happy, healthy and driven person and always find it hard to admit/recognise its going down the pan again!

Tronbear Mon 23-Jul-12 16:15:59

Thank you for the support!

I seem to be reacting quite badly to the thyroxine (only been on it 7 days at 25mcg), but have stopped sleeping, heart beat is irregular, I am breathless and feel totally wired. Missed a dose yesterday, which helped.
Waiting to speak to the consultant now.
This is all so frustrating since there was nothing wrong with me before!

Spellcheck Mon 30-Jul-12 20:58:28

Hi everyone, de-lurking to join in, if that's ok?

Boring history first: I have 3DCs, all normal pgs but failure to progress in labour resulted in two caesareans and a vacuum extraction. Post-natal depression followed, particularly after DC1, struggled to lose weight with all, then lost loads without trying.

Had a mc in Dec 10 at 9 weeks, not sure why but had cramps and bleeding and baby still had heartbeat for two weeks before mybody finally ejected the poor thing. Had a similar situation at 18+5 last year, days of contractions, no bleeding and baby born alive but died almost immediately. Put on weight very rapidly with both last pgs, pins and needles in hands, felt run down and sleepy, but couldn't sleep, plus lots more. No reason found for last miscarriage, though a high level of antinuclear antibodies was found in blood tests. Whole thing was extremely traumatic.

In Jan this year, I noticed a large swelling in my neck. Had a cold so assumed swollen glands. A month later, still had it so went to doc who said may be thyroiditis and sent me off for blood tests. Tests made him think underactive thyroid, scan revealed Hashimoto's, and he dithered for a month as to whether to prescribe anything. Meanwhile, we'd been TTCing with no success, and my obsessive Googling revealed it as a side affect. Thankfully I have private health insurance so I found an Endocrinologist and did the whole bloody thing myself. So cross with GP as Endo put me straight onto Levothyroxine, ran more tests, checked me over properly, took medical history. He said classic Hasimoto's often begins with fluctuating hyper/hypo, and based on history reckoned I'd had it for years. Encouraged me to look at old photos - there is a swelling in my neck in photos going back six years! I thought feeling shit all the time was normal. He said it's impossible to say but MCs and taking ages to conceive may have been caused by this. He said all pg women should be screened. a month after beginning Levothyroxine I was pg. Am absolutely terrified. 11 weeks tomorrow...

Hope all well with everyone else, you are all so knowledgeable and inspirational!

Spellcheck Mon 30-Jul-12 21:02:29

Meant to say Tronbear - I was under the impression that Thyroxine is normally produced by the body, so when we take it it's not a drug as such but a replacement hormone so no side effects. Anyone else clarify this? Not keen on drugs myself so happy to take whatever Levothyroxine I can get to make me normal!! Feel so much better.

Clarella Tue 31-Jul-12 14:20:57

Hi just checking in - been wondering how you are tronbear?

Spellcheck - sorry to read about all your problems, are you in the uk? Surprised you weren't referred on anyway with hashimotos, but not so knowledgeable about that ( I have no idea if that is what I had/ have). Your experience of thinking feeling shit is normal is a very common one!

I'd definitely recommend joining btf in your case. There's a huge debate about screening at the mo.

Thyroxine is a natural hormone so yes it's the simplest form of hormone replacement. However from what I understand and experience, the way it interacts with the body and brain can be different in different people. I do get a bit buzzy at first following a big rise but find it hugely preferable to the underactive state. 'side effects' would be simply what those unlucky people with an over active thyroid would experience, palpitations, anxiety and not much sleep, plus night sweats. I've recently been on too much and too little during this pregnancy and would say that for me external stress is a factor in how i respond in both cases ie if dealing with stressful situations during low or high function symptoms at both extremes are an awful lot worse under stress (if that makes sense!) as you either haven't the energy or brain function to deal with it or have too much tense explosive anxiety.

Clarella Tue 31-Jul-12 14:26:25

Spell check, just to add, sounds like your endo will be in the know and keeping an eye and to reassure you that the scary reports of babies being affected in early pregnancy were studies in areas of the world with low iodine plus low thyroid function and even then only a few iq points and only a % of the infants. Just keep getting thyroid function tests done, both tsh and t4. (nurses should write how many weeks on blood bag)

Tronbear Wed 01-Aug-12 11:31:58

Hi Clarella. I am still really struggling with side effects - breast pain now, heart still racing, panicky sometimes, sleepless nights, bloating, shaking hands sometimes. The breast pain is particularly strange and annoying.
I just increased my dose to 50mcg today too, so rather dreading what that will cause. Two weeks in now.
I guess my body really hates this drug. I keep swerving between stopping the whole thing and persisting.
How is everyone else doing?

Tronbear Wed 01-Aug-12 11:40:31

Spellcheck - your story is very moving and obviously Thyroxine is the way to go for you and thank goodness you have a diagnosis.
Since I only have very mild subclinical hypothyroid and no symptoms at all (it was picked up in a blood test for something unrelated and my TSH levels have been stable for 8 years, I am only taking the medication after much research and advice before TTC) I think that may explain why I am having such troubles. I am also not happy with the decision which obviously isn't helping - intellectually I have made a decision to take thyroxine, but emotionally or 'gut-feeling' I am in no way convinced it is the right choice for me. Rather a mental (and at the moment, physical) tug-of-war!
Side-effects are very common though, according to my endocrinologist and my reading.

tumblebug Wed 01-Aug-12 23:16:48

Hi clarella, sounds like a really interesting meeting.

Spellcheck, sorry it took you so long to get a diagnosis and treatment.

Tronbear, I was in a similar situation to you - subclinical (TSH probably around 5) for years but without any follow up. I mentioned it when first pregnant. TSH was just over 5, t4 lowish normal at 12 weeks, so started thyroxine to bring TSH down. However I never had any symptoms when I started. I was worried because I hadn't been taking thyroxine during first trimester but endocrinologist reassured me that main risk early was mc, and I hadn't.

Like you, I really didn't like taking drugs for a subclinical problem. As I had anti-TPO antibodies, was told risk of postpartum thyroiditis and 5% annual risk of clinical hypothyroidism, but agreed to stop at delivery and monitor bloods. Beautifully documented thyroiditis, TSH of 96 about 6 months after ds was born, and back on thyroxine. I was only briefly symptomatic as it.was picked up so quickly - it was only after Gp told me results I realised I was feeling a bit low (like baby blues again) and really tired. Back to normal after 2 days thyroxine.

I was glad I tried stopping, and don't mind taking the tablets so much as I l.or they're actually helping now.

Regarding your symptoms- it's so hard as they overlap with anxiety symptoms. When I found out I was pregnant this time was a bit of a state (recent mc), called Gp for recent tft's and told TSH was a bit low. Got so worried I felt terrible, but repeated bloods and.TSH had come up already - so was just anxious. Same symptoms though.

Hope all goes well for you, I really understand why you're reluctant to take the thyroxine. In retrospect I know it was right for me (and have gorgeous and healthy ds to show for it, and dc2 due soon! No problems conceiving, and straightforward pregnancies, just a few extra blood tests!).

Tronbear Thu 02-Aug-12 10:58:21

Hi Tumblebug, so interesting to hear your experience of Subclinical Hypothyroidism - thanks so much for posting.
It really is hard to distinguish between anxiety induced symptoms and the real thing - but some of these are so random I really don't think they are psychosomatic. Endo is going to do a blood test today and see me tomorrow, so I hope that will be reassuring.
You are right, the whole point is to have a healthy child, I am trying to keep that in mind. But that feels a bit abstract still (and is a fairly new decision too), especially when we can't even TTC yet!
My poor DH had to spend another evening calming me down! And today will hold my hand at yet another blood test. Lucky he is a bit of a saint blush.

tumblebug Thu 02-Aug-12 21:25:00

Tronbear sounds like you have a lovely Dh! The blood tests are definitely the worst bit. Hope the endocrinologist is able to reassure you tomorrow - or stop the tablets if they're causing you a problem.

Like you I hated having to have blood tests and take drugs when there was nothing wrong with me - feels like being sucked in to the medical system (and I work in it!). Completely sympathise! I guess being already pregnant made me feel like I was doing it for the baby, bit then just felt guilty for not sorting it beforehand. Really can't win!

Good luck tomorrow, let us know how it goes.

Spellcheck Fri 03-Aug-12 09:31:13

Thanks for kind words, everyone.

Tronbear - hope all goes well today and you get to the bottom of those awful side effects! Though I have to say I only conceived after starting thyroxine (wasn't ovulating) so hopefully it'll be worth it for you too.

Clarella Fri 03-Aug-12 10:44:11

Interesting to read your experience tumble. I do sort of agree its hard to disassociate the thyroxine effects from anxiety affects - I was absolutely fine at home during my slapped cheek banishment but high t4 ( only 20 tho) but wham its gone crazy since went back to work and have also dropped down to 200. I was checked yesterday in more depth for over active symptoms as the anxiety had reached mammoth proportions but its clear its external stresses. However tron, the thyroid is an extremely peculiar thing and interacts very delicately with other organs and the brain, including other hormone responses so hopefully an endo will help. You do have my sympathies tron, I hope all goes well today hon. Tbh the fall out from fluctuating levels of the years has had a massive impact on me to the point I now almost have a phobia (esp of tiredness) - the recent weird experiences (possibly due to that teva brand) have made it worse and pregnancy hormones don't help! I have no idea why I got this and was asked by the consultant yesterday so never seen an endo. Possibly always a little subclinical. I too have struggled with the med stuff as before diagnosis was pumped full of prozac and then seroxat which really buggered me up aged 20.

It sounds hypercondriachial but can.be helpful to keep a record of doses and blood tests for your own understanding from the pov that you can track similar symptoms in the future - its hard not to get obsessive about it but I wish id known past results at other times eg during a year of chronic constipation - turned out an error had occurred in doc getting back to me and I needed a little increase. At the btf meeting a consultant up here handed out a record sheet for recording things (including muscle strength, and I noticed a big difference at yoga after recent changes and changes last year) which he likes to collect in after a year. I used to just think I was a wimp!

Hope all goes well today xx

tumblebug Mon 06-Aug-12 10:44:32

Clarella, it sounds like you've had a really hard time. Have you had your antibodies checked? I think I've been so lucky to have so few symptoms. Not looking forward to the post delivery bit though - hope I don't have another thyroiditis. I don't have a plan for afterwards either (doses etc).

Tronbear, how did it go on Friday?

I get stressed at the thought of decreasing my dose too Clarella

I'm 31w pregnant and have been on the same dose of thyroxine that I've taken for the past 3 years. TSH was 1.4 for years before pregnancy, and is now 0.22. I have to phone the GP later to discuss it and I'm putting it off because I think they'll want me to decrease my thyroxine confused but that's a worry to me as it's the same dose I've been on for years. I'm worried my TSH will sky rocket and cause problems with my milk supply once I give birth... I'm hoping I can stall til I see the endo in 4 weeks...

minipie Tue 07-Aug-12 18:51:22

Hello all! Just a quick question from me. How often should bloods be done after the first trimester? I had them tested at 17 weeks (all fine, TSH 1.11 and T4 12.7) but am not due to have them tested again till abou 27 weeks.

Is that enough? I have a GP appointment next week (24 weeks) and could probably get permission for tests from her if it's needed. But would rather avoid yet another blood clinic wait if I can.

Clarella Tue 07-Aug-12 21:30:51

Hi mini, this is from the nhs website:

"Aim for a TSH concentration in the low-normal range (0.4 mU/L to 2.0 mU/L) and an FT4 concentration in the upper reference range. (i'd maybe prefer yours higher??)
If there is any uncertainty about what dose to prescribe, seek immediate specialist advice so that there is no delay in the woman receiving an adequate dose of levothyroxine.
Every 4 weeks during titration of levothyroxine.
Every 4 weeks during the first trimester, and again at 16 weeks and at 28 weeks of gestation, in a woman who is on a stable dose of levothyroxine."

So your 27 weeks is fine according to this and if you appear to be stable but tbh I really don't think anyone is going to deny you a quick check. Do you feel ok?

I'm having as needed (symptom based) so around each 2 to 4 weeks as its not been stable.

Fluffy yes, dropping is a worry, I see consultant tomorrow, feel levels lower now but at mo feel ok. congratulations on your 31 weeks chick! Do you feel ok? Is your t4 ok? they may leave you alone, impressed you haven't needed to increase meds!

Tumble antibodies - Yes had an amusing time where antibodies were supposedly tested at 13 wks when underactive but actually weren't (cock up) so got done again at 17 weeks when levels much better and they were clear (hooray!) But I don't know if might have been high earlier? A doctor once commented I had antibodies many years ago but don't know which or why. The consultant said they need to be done before 23 weeks.

One thing about dropping fluffy - I am going to suggest possibly doing 225/200 alternate days depending on next test as I was the best I've ever been a year or so ago on 125/150 - might be worth asking in order to fine tune. what are you on again? (Sorry silly phone) I was told due to the high dose and apparent tsh suppression it would be wise to slowly step my dose down after the birth (and also possibly a little in last trimester) to help both me and milk etc. The nhs guidelines say go back to previous dose after birth but I was told that as had such an increase it might be a bit much to suddenly drop and the thyroid might not be as capable as before. However in your case your thyroid sounds like it was able to grow and accommodate the changes in pregnancy (i think? As you've not changed dose) and so may be able to cope ok but definately discuss with your doc/consultant?

Hope everyone is ok, how are you tronbear?

Tugstonia Wed 08-Aug-12 10:53:44

Hi all

Just wanted to check in as it's been a while...

Latest test results from 2 weeks ago are TSH 6.8 and T4 16.3 on 200mcg - so TSH still pretty crap but think the T4 levels are not too bad I think? I put myself up to 250mcg last Monday after the midwife called me with my results, and the doctor agreed and am being retested end of next week. I know that I'll end up being on 275 or even 300 before too long and I'm really quite annoyed because I was on 275 pre- and early pregnancy and the stupid GP slashed my dosage to 175 because my TSH then was 0.1 and she didn't know about pregnancy ranges being different (although to be fair neither did I). I just hope and pray all this fiddling around with my dosage hasn't done any damage to my bubba.

minipie Wed 08-Aug-12 11:01:50

Thank you clarella! I knew there was a website somewhere but couldn't remember where blush I feel fine, so will happily wait till 27 weeks. V reassuring.

Clarella I'm on 150mcg. I like your theory that my thryoid is just "growing and accomodating changes in pregnancy" smile I've been feeling totally fine (well, really really tired, but that's the SPD keeping me awake!), no hyper symptoms at all.

mini my consultant asks that my bloods are done every 6-8 weeks, though the results are monitored by the GP rather than him until I go back at 35 weeks. This was fab for peace of mind if nothing else!

Tugs I'm sure the baby is fine, 6.8 is certainly out of range but it's not ridiculously high - I bet loads of women go through pregnancy with that TSH and don't even realise iyswim? I think problems tend to occur with off-the-scale unmonitored TSHs smile

Clarella Wed 08-Aug-12 16:28:46

It sounds,like you're fine fluffy - possibly depends on docs view, just seen a different but extremely helpful consultant, tsh still below 0.05, t4 19.9 last week but getting done next week again as that was only after a week on the lower 200. Starting to think if you feel fine, that level of things is ok. She was extremely good about the headmess stuff and said I (my brain!) seem to be very sensitive to small changes so if I come down again it might be alternate days. But also very helpful about the head stuff too which has gone off at a tangent really now.

Tugs I do agree with what fluffy said above and also get your frustration and worry. The t4 is about the same as mine was when the tsh was 11 so in terms of enough for baby (plus the iodine you consume) it should be fine, though you MAY be more tired (pudding head and low) as a result. (i was!) The tsh does need to come down but yes, I think many women may have that unknowingly and again think the tsh more of an issue in early preg and at much higher levels too. yes in retrospect now I'd be of the opinion that tsh 0.1 is ok given that your requirement would rise in the first tri anyway.

Lol fluffy it might be a simplistic description and probably a mix of the thyroid physically changing and the effectiveness of the feed back loop with the tsh, pituitary gland and thyroxine basically being tickityboo (like that word!) With your 150 as a supportive crutch. smile

Looking forward to the days when we won't give a shit about all this cos we'll be knee deep in .... shit(y nappies) !!

Tugstonia Wed 08-Aug-12 17:48:55

Thanks so much fluffy and clarella - really appreciate your reassurance and wisdom smile

I definitely have tiredness, pudding head (love that phrase!) and have been feeling pretty numb emotionally for the last few weeks, which I reckon is down to thyroid. Hopefully going up to 250 will start to have an effect on the TSH soon.

Clarella Wed 08-Aug-12 19:09:42

Oh dear, it is tricky as pregnancy makes people like that too but I did notice a marked difference - thyroid tiredness is more of a cognitive difficulty (brain fog) and lasts all day, pregnancy tiredness is more body and towards end of day. I did feel numb and flat too, and very sad indeed. I have to say overall I felt better in my brain after around 4 weeks of the higher dose but may affect people differently. Apparently thyroxine lasts in the body for a week so takes a week or so to build up. Hope you feel better soon xx

Clarella Wed 22-Aug-12 18:21:00

Hi hope everyone well?

Just seen yet another doctor at the hospital, after a month on 200 from 125 t4 is 18.6 and tsh still below 0.05...

He was focussing on the tsh and suggested another drop back to 175. I just don't know what to do. I hesitated as previous doc (consultant?) Said I seem to be very sensitive to small changes and was happy to go to alternate 175/200, this guy didn't think a problem. My worry is that another 25 drop leads me to think that it will go back to t416 (but that was 13 weeks so baby may have been taking lots) which could be ok now that apparently baby can make his own (though I believe uses a mixture of ours and his own). I just wasn't so great with t4 at 16 and on 175mg. Though that 16 test result was from afternoon blood.... I always get morning before I have any thyroxine, so perhaps ok?!

It's looking very likely I was on the unstable brand teva in first tri - hospital pharmacist thought it was and I need to contact my pharmacy again, hence the massive wobble and then over supplementation, but now I have no idea of the bench mark for me.

He did add I didn't have to drop, and must admit wonder if as I get bigger ill use more plus worry tsh just won't kick in, and then if not getting enough t4 will affect my milk..... argh! Consultant at that meeting thought a tsh that low wasn't a huge problem for the short period of pregnancy.

I actually feel ok at mo and also have the odd afternoon nap (school hols so not working) . What to do what to do....

Clarella Wed 22-Aug-12 18:26:09

What I am going to do is ask my gp what my t4 was a few years ago when tsh was 13 and I felt rotten. One min I want to trust them and go with it, next I panic. I had agreed to try 175 at the hospital. Maybe just stick to that and trust it was the crappy teva stuff.

minipie Wed 22-Aug-12 18:28:24

Didn't think T4 at 16 was a problem Clarella? Mine's been at 12 something for ages and consultant was happy with that. Is that wrong? I feel fine.

Tugstonia Wed 22-Aug-12 19:00:55

Hi Clarella. I think it entirely depends on how you're feeling right now and how you know you have felt in the past on 175. How have you been on 200? If you feel fine on it then I would keep it as is, or alternate 175/200. If you didn't feel so great on 175 then I wouldn't risk the drop, esp if you're feeling anxious about it now. But that's just my opinion and I'm fully in the camp of trusting one's own instincts and not necessarily following the doctors'/consultants' advice! Maybe try alternating as that's a compromise. When's your next test and appt?

I saw consultant as well today (well, saw the obs registrar, never actually seen the mysterious consultant!) Latest test results from 3 weeks ago after going up to 250: TSH 4.2, T4 17.3 so TSH is falling and T4 rising, which is good. However the doc said she was happy with it and to stick with 250 and retest in 4 weeks. I said 4.2 is still at the high end of the range for pregnancy and I would like it lower, and suggested taking 275. She didn't agree (and didn't like me disagreeing with her!) and said to stay on 250 but instinctively I think I need more so I'm just going to take 275 and see what happens at the next appt...

Have had a shitty week otherwise with bleeding (dark red/brown) and pain and multiple trips to A&E and hospital later they don't really have a clue what caused it and have just said "it happens" and "not to worry" - yeah right!! They initially thought it was BV or a UTI and pumped me full of antibiotics but turns out I didn't have an infection after all. There was no suggestion that it's linked to my thyroid though. More likely placenta related. Anyway I am looking forward to my anomaly scan on 14 Sept when I'll be 22 weeks. Just want to fast forward to January and have this baby!

How far along are you clarella? fwiw I've been on 150mcg since the beginning of tri2 and, although I'm a lot bigger now my TSH has actually decreased (I'm also below 0.5 atm). Personally I'm happy with this as long as I'm symptom free?

I have my 35w consultant appointment Tues after next, I'll report back then!

Clarella Thu 23-Aug-12 07:34:39

Thanks guys, so appreciate your support. it helps to reflect and get things clearer.

Sorry you are also having a rough ride tugs, can you get an interim test in 2 weeks? I can imagine you are finding it all stressful too. but, your t4 definately a good level for baby!

calmer now, doc pointed out my anxiety about it all (work/slapped cheek in mix too) probably making me panic more which I agree - mini the 16 is/was fine for baby at that point, because they rarely test normally it I have no idea what is 'well' for t4 for me, esp as it may have been the brand of thyroxine, which hospital doc said sounded like it was due to very fast drop in tsh after changing brands. I definately had bad brain fog/ constant sleeping after this though and took a while to feel better. this is what I fear, and maybe ruminatimg about but I suppose I don't know if it was lower earlier on etc or if was the stress or other preg hormones - prob all 3! I guess I have to remember t4 apparently fluctuates a lot.

I know what you mean tugs - still wonder about 200/175 and got upset again last night. But on reflection (with a brave head on ) the 25 drop over a month has only resulted in going from 20 to 18.6 (but tsh not budging) so I'm going to be very brave and try it but keep a close eye on energy etc. I do feel very well energy wise but have noticed I'm only sleeping for 5 hours at night this week. There's still time to go back up a little if nec, but encouraging that others are feeling better later on - plus am 26 weeks and from what the woman at the meeting said, and doc yesterday baby will be making his own now so there is a possibility I won't need as much any way? Maybe why your tsh has gone down fluffy? (i do love your nickname!)

I am aware I really am contradicting myself from earlier posts! its just been so bloody confusing being a sort of detective over it all - both the idea of it being unstable as well as its actual effects really affects my confidence and anxiety due to past experiences, the not knowing/understanding/being diagnosed aged 20ish really affected me, as have subsequent wobbles. The gp showed me the initial screen in 1998 which had very high 'thyroglobulin ab' but neither he or I had a clue about that! Prob means autoimmune?

The gp has been quite blunt about not going back to work - it would only have been another 6-8 weeks and I am now realising its not actually fair on the kids I teach, a small class of very autistic children, if I attempt to go back and then fail - in Sept theres always potential for teething probs behaviour wise and we have to be so on the ball, it's always a very hard first term, emotionally, physically and mentally. (Oh and must remember I've had no RA but that's a different ranty thread!) Not found it easy to accept that and actually quite low about it. But at least I don't have the added stress and pressure of that in top so if I do feel worse it will be ok.

Apologies for the detailed rambling, it helps to get it right in my head, and thanks again for your support xxxx

Clarella Thu 23-Aug-12 07:36:08

And I would say if people feel ok beyond 2nd tri, that's ok!

Clarella Thu 23-Aug-12 07:57:57

tugs I must admit I think if I were you id have a similar gut feeling, but that's just my opinion and my gut. At 17 weeks when I still felt crap they were ok with tsh below 0.5 and t4 being I think 20 or 21, can't remember, and left it. (plus the other obs consultant at the btf meeting said it was ok for that stage though may find in third tri I need to come down, however at that point no-one knew about the teva drugs) But I do worry about not being in the slightest bit medically trained and giving advice based on what happened to me.

Could be clarella, though I've been on 150mcg for about 3 years and my tsh was a stable 1.5 until I got pregnant, when I've gone slightly hyper! DH reckons the baby just has a kick ass thyroid to make up for my crap one grin

It is really confusing, and so much of the dosing seems guesswork which is really unnerving. I think staying off work is sensible for both you and your kids, 6 weeks isn't that long smile

Clarella Thu 23-Aug-12 10:26:59

Thanks fluffy, much calmer now.

Goes to show how different everyone's thyroid is. Doc said last night it's a very peculiar thing that is hard to fully understand or explain. Not helped by dodgy meds!

hannahi87 Wed 29-Aug-12 22:10:46

i was diagnosed with an underactive thyroid 2 and a half years ago. i currently take 100mcgs of thyroxin a day. my last pregnancy was 6 years ago now and went great. i came off the contraceptive pill 6 weeks ago and am now 5 weeks pregnant!! (took 1 go! finding it hard to believe myself)

i was unsure if my positive pregnancy test results was due to my hormones from coming off the pill but the doctor assured me over the phone that he would believe me to be pregnant. i am going into see the gp in person tomorrow. reading posts, i am quite worried about my blood levels. i have never really took much interest in them. all i wait for is the girl on the other end of the phone to say 'your fine'. usually when i get my blood checked, i have to wait 3 days on results and then another 3 days on a prescription (if needed)

i can honestly say though that i am feeling a lot tireder in the evenings. normally i would be quite tired all day but still able to sit up to all hours of the morning watchin my tv shows. but over the last few days my eyes are burning come 9pm at night and i end up heading to bed as i start to feel ill with tiredness.

im worried about having to get special care at the endo clinic but on a happier note, my diabetic sister also attends the clinic regurarly as she is 5 months preggers. shel b a bit of company for me (when i eventually tell her)

also, that sister is also the person in the hospital lab who checks the blood tests so i can get my result instantly from her via txt.

fingers crossed for tomorrow

sorry this was soo long hmm

Clarella Wed 29-Aug-12 23:10:25

Congratulations!

Please don't worry Hannahi87, from what I've gleaned many people have few issues and some, and you'll see on this thread, haven't had to change doses much or even at all. Well managed it's not really a risk and also remember the issues for baby are more in low iodine countries and in women who are subclinical. The guidance is to raise by 25-50 mg on bpf (see bta website and nice guidelines) keeping tsh below 2. if id had the guts back in march that I have now id print it off to show the doc but hopefully your doc will be fine. I'd recommend the pregnacare pregnancy vit as it has a low level of iodine if you can take it, and/or make sure you try to get lots of dairy (if you can stomach it!)

Congratulations again! X

Clarella Wed 29-Aug-12 23:17:40
Sizzlet Thu 30-Aug-12 12:50:20

This is my first Mumsnet post! I was inspired to join having found this thread on a search.
So I was diagnosed with hypothyroidism about 6 years back I guess. We've been trying for a baby for 2.5 years with no success at all. In that time my thyroid levels have been checked a few times, partly as procedure and partly as part of investigations resulting in a diagnosis of 'unexplained infertility', so probably not due to my thyroid function.
I don't actually know what my levels were last time, though I think I have a print-out somewhere. I have to confess I really don't know the ins and outs of it all anyway, but was told the levels were normal and have accepted that; I think one 'score' was 0.? - would it be TSH? Is that the one which needs to be below 2?
Any way, I'm on 150mg of levothyroxine and am bricking it for when (yes, 'WHEN') I finally get pregnant, that my levels are maintained and that I get regular checks. I shall probably make a complete nuisance of myself!
So that's me, just saying 'hi!'

hannahi87 Fri 31-Aug-12 16:12:26

Clarella.

the doctors went great yesterday. at my last blood test (3 weeks ago) my Tsh was 0 and my t4 was 1.2 so the docs confident that i am well managed and shoudnt have much to worry about. will know more when monday comes. the bad part of the visit was being told that i had no choice but to tell my employers. i did so last night unwillingly as its sooo early. at least it gets me out of all the manual labour i normally do. i just really hope that the news doesnt spread! will know more on monday.

Lerryn Mon 03-Sep-12 20:36:10

Hi Sizzlet

This is my first post here too! With thyroid issue the 'low' is when it is 2+ (that is bad) as it is measuring the chemical that triggers the thyroid gland. this means that the bigger that number the harder your body is having to work to get adequate thyroxine. So, if your level was 0.? it means you are probably fine as that is a good level and your body isnt working hard to get enough thyroxine. If you were at 5 then your body is working much harder. in preg Best bet is to speak to a doctor or nurse though and ask them to explain it as you should always keep an eye on the levels.

I too am TTC, although only a few months in. I've been underactive for around 10 years now and have been pretty stable for 9 years, just gradually upping my dose every few years when it dips. I had a great doc who let me say what my levels should be, and as long as they were in the normal range he was happy for me to dose as I saw fit which was great as I know myself better than they do! Now i've had to change docs and I dont really know them so not sure on their viewpoint on this.
I'm thinking I may go to the docs to find out about if there is anything I should be aware of with TTC with underactive thyroid and what to expect in pregnancy if/when it happens. I dont want to be overly paranoid though. Can I ask how many of you actually went for a ttc check-up? Did you just get bloods taken to check levels or did you actually go to the GP for a chat?
Thanks!

Clarella Tue 04-Sep-12 09:13:52

Hi Hannah, sizzlet and lerryn!

Hannah, lerryn said a tsh of 0 is good, t4 is harder to track accurately as it varies during the day. The guidelines state to keep tsh below 2 and t4 in the upper reference range but as I said this can be a bit arbitrary - the range I believe is from about 9 to 22 ish, so the higher end is ideal although everyone uses and processes t4 differently - some people have been fine with it a little lower (as their tsh shows) some need it a little higher. Are you taking any extra? It's the current guidelines to up by at least 25mg on bfp but with your doc may have decided to leave it with such a low tsh. If you are not I would definately have another blood test at around 8 weeks, really you should be getting one every 4 weeks during the first trimester. (next time I am every pregnant I will be asking/demanding every 2-3 weeks simply as it changed so quickly for me!) Some (most) people are absolutely fine and others seem to rollercoast very quickly. Knowing more about your condition might help the docs/consultant for example if you have ever had any antibodies. I actually didn't really notice a lot of tiredness as my levels were rising until they were much higher at 13 weeks to tsh 11.

Sizzlet, I never knew my levels till a few years ago as I seemed to be easily affected by very small changes and appear to wobble both ways from time to time. It can be helpful to get your head around tsh and t4 so that you understand what's going on and yes a tsh of 0 would be very good. I'd been below 1 for over a year (had had to drop meds a little) and didn't know this was best for ttc! It sounds like you are being well managed and don't worry about not being treated correctly - you will probably be fine, its a small group of people who seem to get the clueless gps! To answer your question I only found out about it all via a radio 4 programme as I possibly fell pregnant the first time in Feb - this was possibly an early miscarriage so I went to chat about it all with the gp. my usual one seemed to think it would depend on a blood test when upping and as my previous test 3 months before was 0.5 tsh he thought I may not need to take more I just asked if I could get another test (happened to be right at the beginning of my cycle) and it was 1.5. I must admit I worried a bit as the program had been very clear the guidelines say to take an extra 25/50mg on bfp and saw couple of other docs (couldn't get an appt with him) and one admitted she had no clue, another said only when they knew I was definately pregnant. This confused me even more! I wished id just printed out the guidelines but was trying so hard not to fuss! In the end I went to the doc who had said she'd put me up but I didn't get a positive test at the docs (and then they lost one!) till the end of 5 weeks. I'd guiltily taken a couple of extra 25's at 5 weeks and was worried but have since been told by an obstetrics consultant she'd prefer women to be trusted to take an extra 25 on bfp. Next time I will just do this!

Basically I would have a chat with doc and perhaps take some info just incase. From what I understand they should be informed you are ttc if have a thyroid problem. I would also ask for regular blood tests during ttc, probably every 2-4 months (depending how stable you usually are) and and clarify that tsh will be kept below 2, but that sounds fine. You may be very lucky and have a clued up doc who will suggest all this! You will be referred to the obstetrics dept when you have your booking appt and generally get seen at the first scan around 12-14 weeks, but the most changes occur during the first trimester (if atall) so you need docs to be on the ball. However there is no reason why you couldn't be referred earlier if needed. Oh and take pregnacare as has a small amount of iodine in it.

All the best! Xx

hannahi87 Wed 05-Sep-12 19:04:35

well i got my blood tests back from thursday, my t4 was still 0 but my tsh had jumped up to 3.78. i wasnt happy about that as the doctor noted no further action even though that was drastic and its not to go above 4.2. so i booked myself in to get more tests done today. if they have gone up again then il b going to see about upping my dose of thyroxin. and iv got high blood pressure. lil bit worried. also, if there was an olympic category of sleeping id get gold medals all round. hope everyone else is keepin well

Clarella Thu 06-Sep-12 10:45:44

Hannah, I'm a little confused by your t4, 0 can't be right, the range is something like 9 - 22 (can vary) but they aim for the upper numbers in pregnancy and tsh is supposed to be below 2, I would ring the receptionist to clarify those scores, but I'm obviously not a doctor. Good that you've booked more tests though, and tbh a tsh of 3.78 isn't horrendous, mine went to 5.5 at 8 weeks then 11 later on even with extra medication. (i did freak though!)

mrsc81 Tue 11-Sep-12 11:27:03

Just thought id say, im now 12+2, had my ultrasound friday just gone, all looks good :-) So far had an increase of 25mg since week 5/6, had another blood test last week, just waiting on results.

Clarella Mon 17-Sep-12 13:46:03

Congrats mrsc81! sorry missed your post last week.

More and more I'm realising my particular rollercoaster ride is not the norm - after reluctantly agreeing to drop again ( dropped to 200mg from 225mg at 22 wks, then to 175 at about 26 weeks) my tsh has come back at 0.05 still (though I think it was 'below 0.05' last time) but t4 19.7 (last time 18ish) - I was really not expecting this but must say I really felt as if my levels were coming down the first 2/3 weeks but the last few days have felt better. Consultant on weds, I'm really hoping I can stay at this level though doubt ill be allowed. More and more thinking (hoping but also cross about) it was the brand of thyroxine that was the problem.

I know someone (fluffy?) mentioned they'd not actually changed their dose during pregnancy and then had gone a bit hyper towards the end - I wonder if that's happening here!

One question; I've asked a few times about anything different happening towards the end - mini you mentioned extra scan at 32 wks and fluffy I think I saw on a pregnancy thread you're being induced at 38 wks, I've not been told about anything like this and I think I asked outright about extra scans. gonna ask again on weds but just wondering if these were for other reasons or thyroid related?

One more thing, I saw in the British thyroid foundation that there's a London meeting coming up on thyroid in pregnancy soon if anyone is interested and lives around there.

Hope everyone is ok xx

minipie Mon 17-Sep-12 15:01:54

Hi Clarella, yes they said they would give me an extra scan at 30-something weeks (might have been 32, 34 or 36 I can't remember) to check on growth because hypothyroid can be linked to slow growth.

In my case that has kind of fallen away though, as I was found at the 20 week scan to have single umbilical artery (bit of an oddity, means umbilical cord has 2 blood vessels instead of the usual 3). This in itself is a reason for 2 extra growth scans. So I am having growth scans at 28 and 36 weeks because of the SUA. The thyroid extra scan is no longer necessary as the growth check will be covered by those.

But before they knew about the SUA they definitely said I would have an extra scan at 30 something weeks because of the thyroid. Do ask.

The only other "extra" thing is that I am seeing a maternal medicine consultant (not an endocrine consultant) every trimester to keep an eye on my levels. Next appointment next week (28 weeks). I don't know if I'll have another one after that.

Nothing has been said about induction, I guess that might happen if the growth scans throw up a problem?

By the way I'm another one who has not changed dose during pregnancy - stayed at 50 mcg throughout. Blood tests have shown TSH in the range of 1.10 to 2.15 and T4 in the range of about 12 to 14 so all basically fine, perhaps not quite as good as ideal but I felt fine so didn't increase. I am taking Pregnacare and I always eat lots of dairy (I try to eat miso soup a lot too) so hopefully that helps.

Clarella Mon 17-Sep-12 15:45:41

Ah thanks mini, sorry to hear about your cord problem, I think I missed that on the antenatal thread, do hope all is going well. i'll ask again but starting to suspect it currently may depend on which nhs trust you're under. I've been seeing the obstetrician consultant (or registrars) almost every 2-4 weeks to try to stabilise the levels but really noticed all the changes either when hypo or hyper and every drop they've done, whereas the big increase at 13 weeks up to 225 when Tue tsh was 11 (originally 125) took a good 5 weeks for me to feel any better

Yes, I'm partial to a little miso soup too! If you can stomach mackrel I've been told that's a good source of iodine also but with pregnacare its prob fine to just have dairy. Incidently, there was a big consultant review of iodine in the UK witness regards to thyroid function and also during pregnancy etc reported on the latest btf news letter but not sure if its on the website yet. Some countries supplement it the way we do with some nutrients and there's worry about dairy consumption amongst certain age groups esp girls and young women.

Clarella Mon 17-Sep-12 15:46:52

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Clarella the endo has decreased my thyroxine by 25mcg to 125mcg, so I'm now on less than pre-pregnancy. I've been told I can have a sweep at 38 weeks but I don't want one so will politely decline til 40w and will be induced at 41+4 if I'm still pregnant by then.

Clarella Mon 17-Sep-12 23:19:53

Oh wow fluffy, really reassuring as if I keep going like this each 4 weeks I too will be on less than I was! And good to hear you had/have an option on the sweep. Thanks smile

Yeah the endo didn't seem to think it was a problem and just told me to have my bloods done again when baby's 6 weeks old (I'm 37+3 now so it won't be done again while I'm still pregnant) to see if there's any change. I'm a bit worried about my TSH skyrocketing when I'm no longer pregnant as I understand it can affect milk production but I can't find any info online about at what point it becomes an issue (i.e. TSH of 6 or 26??)

Clarella Tue 18-Sep-12 23:46:32

Not long now! How are you feeling? Yes I imagine ill feel the same if waiting 6 weeks. Tbh I think my doc would let me get a test sooner given how fast levels have moved previously. The problem with finding out if there's a level at which tsh affects bf is that firstly everyone seems to cope/react differently to different levels and secondly its not an easy scientific test to conduct - no women are going to agree to allowing to become hypo and its hard to work out at what point/ tsh level someone who they've identified as hypo and affecting bf triggered the milk to stop or not engage.

I've only come across what's been mentioned anecdotally here regarding bf - the only other thing I know is you need even more iodine for bf but I guess (not looked yet tho) the pregnacare bf may have more, though im also guessing dairy cravings during bf could answer that one! My cousin(in law) is currently doing a study of iodine levels in newborns and nursing mothers.

Consultant/registrar tomorrow. Am considering asking for a week or two of alternate day doses if they want me down again, but doubting they'll agree as I suppose that just delays the tsh recovering.

I didn't realise dairy was high in iodine - I've been craving ridiculous amounts of the stuff while pregnant; I usually get through a pint of milk, at least ones cheese sandwich and a large (450g) pot of yoghurt every day blush

Pregnacare original and pregnacare breastfeeding have the same amount of iodine in them - thank god, as pc breastfeeding comes bundled with fish oil which makes it expensive grin

Good luck with the consultant - I got discharged grin so they're clearly not worried about me...

Tugstonia Wed 19-Sep-12 17:14:46

Hi all
Just back from consultant. TSH 2.5, T4 16.5, on 275mcg for last 4 weeks. Put myself up to 275 from 250 because I wasn't happy with my last results... Doc I saw today just said "fair enough" when I told her I'd upped my own dose!!
I'm happy with latest results, especially as the TSH may go even lower by the time I have my next test in 5 weeks as my levels continue to adjust. What do you wise ladies reckon?
Clarella how did your appointment go?

Clarella Thu 20-Sep-12 11:50:54

Well fluffy, cravings probably for a reason! I wonder what chocolate is for?! I too have been a cheese junky. In the UK dairy is the best daily source (slightly ickily I think cos they wipe the teats with iodine,) slightly different amounts in winter and summer milk but nothing to shout about.

Bizarrely a relative is a,research scientist in the area of iodine which I only recently found out! Particularly looking at status in women, girls, teens and pregnant/new mothers and babies. She told me that:

during pregnancy, your requirements increase to 250ug per day. You can get approx 150 ug from your pregnacare type of tablets and can complete by having a good intake of dairy / fish. If you do not take supplements, you need to make sure that you get your three servings of dairy per day, and fish at least twice a week (but limit oily fish - best is haddock).
Dairy is also important for bone health, as if you do not have enough calcium, your brain will send signals to your bone to start demineralising / leach calcium.... fun! It is also important to make sure that iodine intake is adequate while you are breastfeeding too.

Didn't know that about the bf pregnacare, I got round that by asking which fish oils would be equivalent to the duo pregnacare pills in Boots and it turned out to be cheaper to buy their low dose fish oil capsules with normal pregnacare

My baby brain routinely replaces similar nouns - I meant haddock not makerel! I'm sure its been said before (probably by you) but its best to take pregnacare 4 hours apart from thyroxine. unless you are a strict vegan its really hard to be iodine deficient now.

Great you've been discharged though fluffy!

Good for you tugs, and a good call too. If you feel ok that sounds good - I forget how many weeks you are? I really think that despite my 2 drops since 22 weeks and levels have remained the same shows that baby was using less and less. I'm 30 wks now, Ive been told its 'around' 26 weeks baby's thyroid hormones kick in.

My appt was very good. She was actually happy to leave me at that dose if it was going to worry me as she said that although bugger all tsh (its actually still below 0.05), I'm still well within range for t4. Ultimately they want me to drop but as you can literally hear the giant lost marbles rolling on the floor when I talk obsess about levels they try not to push me! She said the same as the btf consultant, that, although not ideal, in thyroid cancer patients they have to completely suppress tsh anyway. So I opted to do alternate days drop (175/150) which she was fine about, though I may actually do it for only 2 wks then go to 150. Sound ok? I was on 125 pre preg so reckon I can slowly nudge towards that or the alternate 125/150 I was on 2 years ago?

She showed me a graph of results over the last year to date, (more marble collecting strategies!) I didn't realise how very hyper I was last year (t4 over 25) but an alternate day drop sorted that from 125/150 to just 125. Though the probs getting t4 tests in early preg mean its not a very accurate graph! She also offered a scan without me asking, apparently it depends between different nhs areas if its straight Hypothyroidism and not strictly necessary but she thought it would be helpful (for said marbles) I thought a bit greedy initially but then remembered all the taxes I've paid! If anything she was extremely good at tidying marbles. ;)

One more thing I'm a little cross about was id been told by my community mw at 8wks that i'd have to be 'upstairs' in the doctor led maternity unit, but this was apparently not true, though I will be there now due to the ups and downs and nutty anxiety. I don't feel worried about birth though. I'll be going to full term etc as a normal pregnancy smile might even be lucky enough to grab a pool!

Sorry mammoth post. I was always shit at keeping to word counts and so don't do haikus or twitter ;)

Tugstonia Thu 20-Sep-12 16:00:45

Thanks clarella. Am 22+6 now. Sounds like your appt went well and the alternate days drop is the way forward.

I was automatically offered extra scans at 28 and 36 weeks, and at my hospital they do a routine scan at 32 weeks as well, so i'll be having 3 more scans. Feel v lucky!

I didn't know that about taking thyroxine and pregnacare 4 hrs apart, I always take mine about half an hour apart... Hopefully it's ok though?! Interesting also about the amount if iodine in dairy, explains my milk (and chocolate?) addiction!

Clarella Thu 20-Sep-12 17:18:35

Yeay nearly at the 24 wk mark tugs! I wouldn't worry about the 4 hours, tbh its doing the same every day routine wise imo, also I find as a consequence I sometimes forget to take it (as much as 3 times a week I reckon! Bad mummy) so probably 6 and two 3s.

Funny about scans, I really don't feel so bad about having an extra one now, but I can't remember how your hypothyroidism came about? I know they would here if it had been graves then hypothyroidism apparently.

Tugstonia Fri 21-Sep-12 09:34:15

clarella i've had hypothyroidism since I was born, not sure if that's why I'm getting extra scans. Glad to have them though! One thing I have no idea about (and have never asked...) is if there's any understanding of how likely it is to pass it on genetically? No one else in my family has thyroid problems so I'm the freak grin, so guess my baby won't necessarily get it but starting to wonder about it now.

Clarella Fri 21-Sep-12 12:21:11

I thought that was the case, sorry on phone could have read back posts. - does that mean you were born without a thyroid or it didn't work? I know there's an extra chance of autoimmune diseases being hereditary and also linked eg if there's vitilago in the family there can be higher incidence of thyroid problems but I also thought that sometimes the thyroid is just missing, like you might have a missing kidney (DH has a split kidney - almost 3 greedy thing!) But lots of things are hereditary, eg tendency for allergies, asthma, diabetes (another autoimmune link). It might be why the extra scans but also I'm starting to think its very different in different nhs trusts, as you say, some do later scans as a matter of course anyway. Mine doesn't. Either way it sounds like you are very well looked after! I would maybe ask for peace of mind/ to be aware. It's something I've wondered but I'm having a boy so wonder if less likely to be passed on.

What little I've gleaned about childhood Hypothyroidism is very much through the British thyroid foundation - they have a lot of info about it in newsletters plus there are volunteers you can ring up to find out more about people with similar experiences. From what I was told by consultants, the only real danger in utero to the baby's thyroid is the TPO antibody in mum which can affect baby's own developing thyroid and give side effects too, which they have to tackle. I think this is usually graves disease though. I was tested for it incase I had graves but had been missed since I've been hypo since the age of 20 and it seems to fluctuate a lot but I was clear for that. Again I'm a bit sketchy about all this though!

Tugstonia Wed 26-Sep-12 19:46:09

Thanks clarella. Will look into the hereditary stuff and also look at the BTF info. I don't know if I have a thyroid gland or not. To find out would have involved surgery apparently and my parents felt it was too invasive when I was little. There are no doubt non-intrusive scans they could do nowadays but I don't know how much difference it would make to know. I asked the sonographer at my last scan if he could check the baby's thyroid but he said they'd only be able to see it if it was enlarged and therefore had goitre, so the fact that he couldn't see it was a good thing.
How are you feeling on your dose now?

ShellyBobbs Wed 03-Oct-12 14:01:57

Long time since I've been on here, seems like you're still looking after everyone Clarella smile

The iodine in dairy wow! I must eat at least a small chunk of cheese everyday (the kind you buy from Asda for £2) and drink LOADS of milk ;)

My thyroid has stayed stable and I'm still being tested every 4 weeks thanks to my lovely doctor. I've got 6 weeks left and all looks good. No extra scans for me either but I asked to be put back to midwife led care at my 20 week appointment which they did.

Clarella Thu 11-Oct-12 17:08:22

Sorry missed your post tugs from ages ago! hope you and bump are well?

Hope everyone is doing ok. Ive felt a lot better the last few weeks since doing 2 weeks of alternate days but then have just done 150 the last 2 weeks. Ive a test on monday (will be 34 wks) and don't expect much change but as I was on 125 before pregnancy and feel a lot better Im sure its ok.

What happened to my bloods/ numbers does seem to be unusual (from 125 to 225 and almost back again) and I and the doc think it may have been the brand of thyroxine that was the problem but then meant the hospital over dosed me briefly unknowingly. I have to say coming down 25mg every 4 weeks for the last 12 weeks (drop of 75 in total) has definately been difficult as i felt like crap and all over the place but necessary as my t4 and non existent tsh hasnt really changed at all.

Glad all is well shelly - i probably went OTT at times, i just didnt understand what the hell was happening to my body!

I had a very different midwife recently with a very different attitude and knowledge about thyroid - some of me thinks if only I'd had her from the start... hmm

Clarella Tue 16-Oct-12 16:30:51

Oo well tsh 0.07 (hurrah!) And t4 16 - but that's only about a week on 150- hoping I did the right thing, they did want me on 150 last time but thinking might be good to stay put at this dose and see what happens smile consultant tomorrow.

Becboo25 Wed 26-Jun-13 19:05:48

Hello,

I'm not sure I'm posting in the right place as I'm new to Mumsnet but I'm hoping someone can advise me.

I've just been in tears after coming off the phone to my GP who has made me feel like the most stupid person in the world.

I have an underactive thyroid having had my thyroid zapped with radioactive iodine to treat an overactive thyroid about five years ago (I'm 34). I've felt fine taking thyroxine, but my TSH & T4 results have always suggested that I need to increase my dose...but every time I do I feel overactive (jitters, palpitations, hot flushes). Having been overactive originally I know exactly how my body feels when overactive, so doctors have usually been ok with me just increasing my dose a wee bit so my body feels 'in balance'.

I've been back & forth with my current GP over this, as happens every year when my annual blood test is taken. At my last appointment I told her that I'm planning on trying for a baby soon (was planning on not taking any more contraceptive pills as of about a weeks time) & she mentioned that it's important to get my levels right if I'm planning on getting pregnant. I asked whether it would matter if I was a bit underactive & she said she didn't know but would write to a specialist & find out.

I then went home & googled, finding this thread & lots of others, suggesting that it's massively important to be at the right level! I've completely freaked myself out reading about how hard it's going to be to conceive/increased miscarriage risk/pre-eclampsia/problems breast feeding/autism etc etc etc! I read that I should be aiming for a TSH level of under 2 & T4 of at least 16.

I phoned my doctor today & told her about the stuff I read & asked for my actual TSH & T4 levels, rather than her just telling me I'm 'normal' or 'a bit underactive' or whatever. She got really pissed off with me & told me that we've already discussed this at length, she's been trying to make me see how important it is all along (she SO hasn't), & that googling shows I don't trust her judgement. I really can't believe how she spoke to me. She grudgingly gave me my latest test results & said she'd refer me to a specialist but that it would probably take weeks to hear back. She's made it perfectly clear that she's not going to discuss it further.

Sorry, that just turned into a rant! She really upset me.

So anyway, turns out my T4 is 19.8 (ok?) & my TSH is 3.21. It seems from comments on here that I should be aiming for a TSH of under 2, suggesting I need to increase my dose even more. I feel fairly dreadful at my current dose, but if that's what it takes to give me the best shot at having a healthy baby then so be it I guess.

So, after all that rambling, I guess I'm asking...

Should I be aiming for a TSH count of less than 2 now, or do I not need to worry about that until I actually get pregnant (touch wood)?

Should I delay trying for a baby until I've spoken to the specialist, even though that could take weeks or even months, then more months of messing about with my dose? At 34 I'm really feeling the pressure to get cracking.

Should I just increase my daily dose of thyroxine slightly & just give up on speaking to my GP since she's no help at all?

Does anyone have the link to the official NHS guidance for trying to conceive with an underactive thyroid?

I hope I'm not sounding too hysterical here but I feel completely thrown by what I've found out. I wasn't worried at all about getting pregnant, I just thought I'm a healthy weight, don't smoke, eat the right stuff (most of the time anyway!). Now I feel like it's going to be a huge battle & I need to worry about miscarriage & whether my baby will even be normal sad.

Any advice would be greatly appreciated.

B

notadoctor Wed 26-Jun-13 23:23:17

Hi Becboo,

Sorry to heat your Doctor made you feel so bad.

I'm afraid I don't actually have any advice at the moment but I wanted to say hello as I'm in a similar position...

I'm very lucky to have a beautiful little girl (aged 19 months) but was diagnosed with an under active thyroid - supposedly brought on by the pregnancy - when she was a few months old. At that point my TSH levels were extremely high (35) and it took a while to get my dose right but touch wood I've been stable for a while now.

Anyway, we're about to start trying to conceive number 2 and like you, I have been googling and panicking. I am going to my GP tomorrow and will pass on any useful info. And in the meantime, hopefully someone more knowledgeable than me will have some advice on this thread soon.

Rhubarb78 Thu 27-Jun-13 03:27:33

Hi becboo heres what i think based on having the condition myself and having had 2 healthy babies (rather than proper medical knowledge). The guidelines do say below 2 but my levels have never been that low on conceiving, i think your level of 3.2 would be fine as long as you get your dose increased once you fall pg. The risk of hypothyroidism is largely when undiagnosed, if managed well in pregnancy it shouldnt cause any problems and likewise in concieving. Fwiw i have fallen pg 1st month trying with my 2. I think you should stop panicking and ttc as planned, you just need to be on the ball and aware that your dose will need increasing and monitoring closely when you do fall pg. Good luck

Banan Fri 10-Jan-14 17:19:05

Hi I was diagnosed with an underactive thyroid 3 years ago and recently had a miscarriage and was told it was due to levothyoxine not been on the right dosage. My twin sister also has had 2 miscarriages in the last 3 months due to levothyoxine. Is there any other underactive thyroid medication we can take has it keeps happening. Thanks

cazbaz12 Tue 02-Sep-14 21:15:12

Hi i have had an underactive thyriod since i was 21 am now 36 an still aint fell pregnant an docs dont seem intrested when i bring it up any1 help

MrsPatMustard Wed 03-Sep-14 09:13:39

Had no real problems during pregnancy (they do monitor you closely and tend to increase your dose of thyroxine whilst you're pregnant.) However, did struggle to produce colostrum after DS was born , which meant he fed badly and we ended up on formula. Nobody told me at the time that thyroid troubles impact on breast-feeding. I wish they had because I felt a real failure at the time...

UmaVerma13 Mon 08-Sep-14 15:12:20

This was indeed very informativesmile

Siarie Mon 08-Sep-14 15:43:02

Agh, this is the perfect thread to voice my worries.

I'm going to be 7 weeks on Wednesday and I went to see my doctor several weeks ago. When I was there I asked if I needed to increase my thyroid meds and was told that he didn't know but they would consider that when I had my booking appointment.

Lots of researching online told me this isn't the case and I've just rang again today and another doctor said yes of course it needs to go up immediately. So I've been taking 125mcg one day and 150mcg another which is going up to 175mcg a day as of today.

But I'm concerned about what damage might have already been done? As I'm almost 7 weeks now hmm

Tugstonia Mon 08-Sep-14 17:42:59

Nice to see this thread has been resurrected as I was about to post something!

Congratulations Siarie and try not to worry. I am 11 weeks with baby #2 and have had an underactive (possibly non-existent) thyroid since birth. In my first pregnancy it was very closely monitored from the second trimester but the GP I initially saw at about 5 weeks was clueless - sounds similar to the one you saw first of all. Despite my TSH being fine for pregnancy at that time, the GP said I was overactive and so reduced my dosage massively, meaning that by week 10 or so when I had my initial antenatal bloods done I was under active. I was really stressed and worried about the damage it may have caused my baby but am happy to say that my daughter has no problems at all and is perfect smile It took a few more weeks for my TSH to come down again. As long as you're taking more thyroxine (my consultant said you need 30-50% more in pregnancy) then your levels should normalise.

Do you happen to know what your TSH was pre-pregnancy? As far as I know problems usually only occur if you're chronically under active (or overactive) and don't increase your dose, which is why your levels should be monitored very closely and you should also be referred to a consultant. I had blood tests every month and extra scans, but the scans could have just been my hospital. Also remember that the parameters for 'normal' TSH are much smaller in pregnancy (they should be 0.1 to 2.5 versus 0.1 to 5 normally) - my GP and some of the registrars I saw had no idea about this shock.

So, a long-winded way of me saying don't worry, insist on regular blood tests and make sure your TSH is between 0.1 and 2.5.

Tugstonia Mon 08-Sep-14 17:53:11

MrsPat really sympathise with you re breastfeeding sad

Banan Sorry to hear about your and your sister's miscarriages. Do you and Cazbaz know what your TSH and T4 levels are by any chance? How much levothyroxine do you both take currently? Sadly many GPs are not especially well-informed when it comes to thyroid problems, and especially in terms of fertility and pregnancy. A friend of mine suffered multiple miscarriages and before going private and finding a doctor who diagnosed her hypothyroidism and got her onto the correct dosage of thyroxine, and happily she had a baby girl a year ago. You should both insist on a blood test and ensure that your TSH is low (0.1-2.5 is recommended in the first trimester) and your free T4 at least 16, and therefore that your thyroxine dosage is high enough. I've found through my own and friends' experiences that you often have to really push GPs to take it seriously.

Becboo wondering what happened with you and hope you found a doctor who knows what they're doing smile

Siarie Tue 09-Sep-14 09:08:38

Tugstonia thanks for replying, I'm not exactly sure but I know I was only mildly underactive just before conception. I was still getting my levels balanced and there was a mix up with my results so I thought I was finally in the normal range, started TTC and found out that it was a different test that came back normal.

So I was increased from 125mcg to the 150mcg on alternate days. I'm feeling a little more reassured now, it's frustrating when you do everything you can but are wrongly informed by medical professionals.

Providing this pregnancy is viable I will be keeping firm control on pestering the relevant parties!

blamber Tue 09-Sep-14 12:27:45

I was referred to a consultant for having hypothyroidism. The consultant advised me to increase meds. I went from 100mcg to 125. I read that you start increasing from about 6 weeks so you weren't much later siarie.

They keep checking my levels and I have stayed on the 125 so far at 30 weeks.

I didn't know about the link with breatsfeesing sad. Will have to read up on it a bit more.

LydiaRedRosy3001 Sun 14-Sep-14 13:37:16

Hi,
I'm doing this for my mum, she has underactive thyroid and she is around 18 weeks, they haven't booked her in for a scan yet, it's this friday but she's been bleeding a little and it's worrying her because this would be the 3rd time she's lost one, and I was just wondering if you had any advice or could direct me to someone who could provide me with advice?
Lydia

Tugstonia Mon 15-Sep-14 09:10:26

Hi Lydia

I would definitely recommend that she speaks to a midwife or doctor and get referred for a scan sooner than Friday. I had several episodes of bleeding throughout my last pregnancy, including one at 18 weeks, and all was fine, no cause of bleeding found, however it was very stressful and made me v anxious. My doctor/midwife always took it v seriously though and I was scanned, tested for UTI and had cervix examined each time. So she should get in touch with midwife/doctor this morning. Hope she's ok smile