Thyroid disease in pregnancy - Terrified.

[SleepyCaz]

Hi

Just typed up a huge OP, then lost it.

Am 14 weeks pregnant, and have an underactive thyroid.

Today I have been told that my TSH is still above 5. The consultant wants it to be below 3. I have had my Levothyroxine increased from 50mcg per day, to 75, then 100, and today to 150mcg per day.

My consultant told me she needs to scan me every 4 weeks to monitor my baby's growth.

Have been Googling this evening (stupid) and now I'm terrified. All info seems to point to high TSH/hypothyroidism causing brain development problems in the foetus, and learning difficulties and mental disabilities in the baby. (I know these are incorrect terms and I apologise, but some of the websites referred to 'mental retardation, which is a horrible phrase, and I couldn't use it, but I'm ignorant of the correct phrases).

My DH says not to worry, and that the consultant would have mentioned this if it were a likely outcome. However i'm really scared that by 14 weeks my baby's brain id formed and it's too late.

Can anyone advise me, please?

Also posted this in health.

Thank you.

Hi, sorry i dont have experience myself of this but didnt want to read and run, your husband is correct, you shouldnt google things they only make you 10 times worse. stick with your consultant and concentrate on your own specific case, what your reading could be about people with a conbination of things wrong with them not just a thyroid.

for what its worth my friend had an underactive thyroid for the past 7 years, her medication was messed about quite a bit while she was pregnant as she was transferred to numerous consultants over the time, her dd is now 4 and is perfect in every way. stay away from google!!

Hi sleepy,

Firstly congratulations on your pregnancy! Secondly please don't panic - I am sure I and many others have panicked enough for you!

Dr Google is indeed bad and slightly inaccurate. I am now 16 weeks and began freaking out just before I conceived based on said googling. However there can be some confusion amongst gps, the consultants are the best source of info.

Tsh was 1.5 pre preg (v good) on 125 mg
Raised to 150 at bfp.
At 8 weeks it was 5.5 but there was a delay getting back to me - think as mw took blood? 10 days later told to go to 175mg.
At 13 weeks tsh was 11 (very upset) saw consultant 3 days later who finally did full screen (even the doctors requests for t4 were ignored) at that point it was 9, t4 16 (range 9 to 22 I think) wacked me up to 225 mg. (so it may have been more than 11)

He did say he'd have preferred going up to 200 when it was 5.5 but obviously I only saw him at 12/ 13 weeks so it sounds like you are under really great care.

I asked outright about brain issues (i teach in an sen school so pretty worried) he said there's a lot of brain growth to go and we'd be talking iq points, none of the children I teach would be there because of this. IMO iq points can be worked on in so many ways :).

Its very likely you may have been getting enough thyroxine for the baby, just not for you. Tsh is a better over all indication as t4 can fluctuate. The studies showing brain problems are based on women who are 'sub-clinical' - that is no-one knew they had a thyroid problem and it wasn't picked up or treated, even then the % of children affected was not hugely more than in the control group.

Consultant said The tsh can be an issue as it might over stimulate the babies thyroid giving it a goitre and potential for overactive symptoms, as well as birth difficulties hence the monitoring scan. However 5 is really not much to worry about - the normal range is up to 4 ish though they prefer it much lower in pregnancy.

He tested me for antibodies but I've heard nothing on that score yet.

I totally understand your concerns - I've been pretty down about it cos I thought I'd really pushed for everything but I don't think my results could have been predicted. I wish id insisted about seeing the consultant sooner. The British thyroid foundation is a very good support. There's a meeting on 7th July in Newcastle on pregnancy and thyroid which I'm going to.

(sorry such a long post!)

This is the fab thread that's helped me :

www.mumsnet.com/Talk/pregnancy/864666-Underactive-thyroid-and-pregnancy

remember the 'retardation' (awful word) is from undiagnosed women and also in areas of the world with major iodine deficiency. keep eating yoghurt, cheese, eggs, fish and lots of milk :)

www.mumsnet.com/Talk/pregnancy/864666-Underactive-thyroid-and-pregnancy

bloody phones :)

SleepyCaz I'm sure TSH of 5 isn't anything to worry about, though it probably won't stop you worrying. I've also got an underactive thyroid and like Clarella my TSH went up to 11 at one point (c. 9 weeks I think, before I saw a consultant at 12 weeks; I had to have a huge argument with a locum GP to get my thyroxine raised).

I'm now 37 weeks and have stopped thinking about the potential consequences though I've had the occasional meltdown because my treatment since then has kept my TSH right down (under 0.1 at the last blood test), and the consultant didn't even mention development issues although he did talk about other undesirable effects and possibilities. What Clarella says is good sense (and has reassured me too, thanks!).

While I'm not convinced that my GP handled my results in the proper way, I do also think that if it really mattered consultant appointments wouldn't routinely be scheduled for the very end of the first trimester. though it would be good if GPs had a clue how to deal with what is a pretty common issue in pregnancy

Glad you are well ooivaar and your consultant was as calming as mine!

I think the problem is that the huge jumps happen in the first trimester - women either struggle to conceive or mc. The guidelines were changed in the last few years based on research ( to focus on first trimester) - the US handles it slightly differently my consultant said. As gps were used to it being dealt with by consultants after 12 weeks its not really in their experience, though the nice guidelines exist. (some don't appear to be aware however, as research by the btf shows). (Oh and mws are clueless) However my thyroid didn't respond the way many would. You just don't want to appear to be the fussy expectant mum but I wish id fussed more now when it was 5 and they didn't get back to me for ages.

I'm sure we'll all be fine! Ooo I wonder if I get an extra scan when I go back to the consultant next week - I thought it was just to talk about latest blood test which is next Monday!

Just to reiterate though, if you were taking thyroxine before you were ok, the tsh can be affected by other things

How much above 5 is it? Try not to worry - it sounds like the consultants are on it, and your baby starts producing its own thyroxine by about 20-22 weeks iirc, so not too long to go on that score anyway :)

On the brain note this article shows how plastically moldable it is

m.guardian.co.uk/science/2012/jun/12/barbara-arrowsmith-young-rebuilt-brain?cat=science&type=article

Hi all.

Sorry, have only just been back to MN this morning, been so busy. Just going to read replies.

Thanks so so much for answering :)