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!

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)

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?

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.

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!).

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 .

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.

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.

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

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 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...

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.

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?

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.

Thank you clarella! I knew there was a website somewhere but couldn't remember where 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" :) 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 :)

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. :)

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) !!

Thanks so much fluffy and clarella - really appreciate your reassurance and wisdom :)

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.

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

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....

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.

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.

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!

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

And I would say if people feel ok beyond 2nd tri, that's ok!