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!

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.

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 , so guess my baby won't necessarily get it but starting to wonder about it now.

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!

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?

Long time since I've been on here, seems like you're still looking after everyone Clarella :)

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.

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...

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 :) consultant tomorrow.

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 :(.

Any advice would be greatly appreciated.

B

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.

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

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

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

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...

This was indeed very informative:)

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

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 :) 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 .

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.

MrsPat really sympathise with you re breastfeeding :(

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 :)

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!

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 :(. Will have to read up on it a bit more.

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

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 :)

Hi ladies, I'm newly pregnant today and was told I had a borderline underactive thyroid by my GP last week following some blood tests at the beginning of Jan. My levels were TSH 10.9 (normal range 0.27 - 4.2) and FT4 12.3 (normal range 12.0-22.0). Clearly the TSH levels are v high and the FT4 borderline. I've just had more bloods done today (TSH, thyroid peroxidase antibody, ferritin, HCG, protein and prolactin). My prolactin was also raised in the previous test results and I was vit D deficient in spite of taking a pre-pregnancy multivit. I've just been given a v low dose of levothryroxine today (25micrograms - or whatever the unit is). Have any of you had similar experiences? I had to push my GP to get the first blood test done and again to get today's further tests done. I'm hoping this new set of bloods will give us a clearer picture but had a miscarriage last summer (8+3 weeks - didn't find out til the 12 week scan in spite of a heart beat showing at the 8 week stage) so am very keen to avoid going through that trauma again. Thanks for your help!

I got diagnosed with under active thyroid at the age of 11 I am now 22 and is pregnant with my first child, my doctor hasn't said having thyroid will cause any defects to my child the only thing I had to do was up my dosage 50mg whilst I was pregnant. And I haven't had a problem at all. I wouldn't worry too much google is a nightmare and is scary!

Hi boco, yes I am 17 weeks now and was given test results which suggested an under active thyroid the day after I got the positive test. I'd had 2 miscarriages in the few months before this which was how I came to have the tests. Dr was reluctant to do anything and I really had to push for 25mg of levothyroxine and further blood tests - I got fobbed off twice in the one day and then turned up to the GP surgery with the NICE guidelines printed off and pretty much said I'd have some kind of nervous breakdown if someone didn't help me keep this baby! If you are newly diagnosed in pregnancy you should be referred urgently to an endocrinologist.

Your dr seems to be doing the right thing though, 25mg is very low but it will help a little, just make sure you push for a dosage increase when the results are back (if they are over tsh 2) good luck.