Underactive thyroid and pregnancy

[cumbria81]

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!

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

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 :)

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).

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!)

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.

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

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

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

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

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.

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.

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!

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?

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

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?

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

oh ok thanks x

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

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!

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!

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.

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!

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!

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!

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.

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.