Profoundly hypothyroid (TSH 27) during first trimester. Does this mean my baby is damaged?

[Lucy955]

I am really scared. As you can see from the above my thyroid had a storm at (or before) 8 weeks and I had hardly any t4 in my blood. By 17 weeks tsh was back down to 1.8. However I realize this puts my baby at higher risk of a number of problems, especially as my thyroxine was not put up until after 12 weeks due to appalling communication between lab, Gp and midwife.

I realize the risk is higher but what does that really mean? Has anyone had any similar experiences of tsh levels this high in early pregnancy and has anyone had any subsequent problems?

My consultant said he thinks it will all be fine but could not give me any good reasons as to why he thought so. I really feel they are fobbing me off and given my resent care I just don't rust them anymore.

I realize I don't know much about obstetrics, but I am a scientist by profession and have access to most of the medical and midwifery journals. In desperation I have spent most of the weekend printing off and reading everything I could find on the subject, but I don't feel much better. As with a lot of things I suppose, there just does not seem to be much good, conclusive, reliable, evidence available? Am I correct in concluding that in reality no one really has any idea?

Do any of you have any experience in this area?
Does everyone get such vague information?
Any ideas as to what I should do next / who i can go to?

If there is a problem I will handle it but I am finding it very hard to cope with this uncertainty.

Lucy

Please help. I'm very scared.

hi Lucy, sorry I don't have an answer for you but bumping in case someone else can help.

have you been put on levothyroxine yet?

please ignore my last bit there, I'm on the app and I missed a bit of your post.

I am not in any way an expert on this,( though I have a reasonable grasp of the physiology) nor do I have any personal experience but just didnt want your midnight scared post to go unanswered. And I am sure youve probably read many lists of possible outcomes of uncontrolled maternal hypothyroidism.

How far along in your pregnancy are you? have you had scans ? or any issues on these and who's care are you ultimately under?

A good place to start might be to discuss with an endocrinologist if you have one? or ask for referral to a MFM specialist at your next appointment or scan. IIRC there are issues with TSH/T4 interpretation in pregnancy due to direct thyrotrophic effects of BhCG produced by the pregnancy.
Reading around the issue I am struggling to find good statical evidence too, but suspect an endocrine speciaist might have a better idea of the likely outcomes or be able to look into the issue for you further

Are you due to have your 20wk anomaly scan soon? Hopefully all is well - but they may spend a little extra time on your scan checking everything is ok.

Insist on a referral to an endocrinologist too.

Please make a formal complaint about the delays to your treatment. So for you, you're in such a worrying situation because of their failures to communicate in a timely way

FWIW I understand that hypothyroidism (i was diagnosed in 2008) can lead to small babies (I had growth scans at 28 & 34 weeks, then a presentation scan at 36 weeks as DD was stubbornly breech) and also birth complications (Dutch study, said interventions more likely if hypothyroidism is under treated).

Call the GP in the morning and ensure a proper care plan is sorted out.

I'm 18 weeks now and have only just been told (or rather had it written into my hand held my notes) the results of tests at 8 weeks, but thyroxine was increased to 150 at 13 weeks. I am due my 20 week scan in fortnight. I have been asked to have another blood test in 4 weeks. When they will..."probably put thyroxine up to 200".

Yes, I understand that only the TSH value is taken into account as t4 is raised during pregnancy.

I am currently dealing with an endocrinologist, 2 obstetricians (head of obstetrics kindly rang me at home today but didn't have much to tell me), a midwife and Gp (or rather the receptionist in th GPS office) hence I assume the confusion over the blood test. I was told by the rather distracted receptionist that the results at 8 weeks were "ok". I feel so stupid for not getting the full picture from her earlier.

I will call the obstetrician again in the morning I think.

Thanks for the reply. The ranting has made me feel better anyway. X

Another one here diagnosed as hypothyroid and not started on replacement in a timely fashion due to GP comm issues.

I do not know why this is not screened for routinely in pregnancy in this country.

Small babies and pre-eclampsia risk drops with adequate treatment (and it sounds as though this is all on track now for you). Some centres will do extra growth scans as the poster above said. You have probably seen that the only population based studies draw limited conclusions regarding neurodevelopment outcomes etc.

Anecdotally, I have come across cases with T4s in the 50s pre treatment who now have perfectly healthy, developmentally normal babies.

I would try not to worry, all of the right things are happening now.

Best of luck for your scan and very glad to hear that things now sound more on track!

Blood tests done every 4 weeks to check levels from now on is a very sensible idea. Make sure to have one at around 35-36 weeks to check levels ahead of labour.

TSH should be between 0.5-2.0 in women of childbearing age, the higher 4.5 reading is for the general adult population. Always ask for the actual numbers from your blood tests and don't be fobbed off with "blood test was normal".

I don't know how much advice to offer, but I'm hypo too and am 30 weeks now. My thyroxine was increased straight away due to previous mc and so far my TSH has been quite low.

Make sure they do bloods every trimester and keep your TSH low, my endocrinologist likes it under 2.5.

Always ask for your actual numbers, my GP prints them out for my notes. I'm a nurse and did loads of reading around too, when I first became pregnant. I have an extra scan at 36 weeks to check baby's development.

Thank you for all your advice. Does anyone know off or have any experience of a baby having problems in similar circumstances? To be honest it's the brain damage which I am most worried about. I think I could cope with most other things.

I think the most the studies have ever come up with is a few points of difference in IQ & only ever tested at one age. that's a notoriously difficult endpoint to judge esp since kids have such neuronal plasticity. And don't forget your baby still has a long way to go in terms of brain development at this gestation& you are now adequately replaced. Don't worry.

I'm hypothyroid too, but my dose was increased immediately. I read that the risk of miscarriage is higher in the first trimester if your TSH is too high, so luckily you have passed that stage. It's good your TSH is under control now and also the baby has now started producing its own thyroid hormones. I don't think problems with the thyroid can be transferred from mother to baby anyway. Don't worry!

Hello,

Have you tried the British Thyroid Foundation or Thyroid UK? I must admit I am only familiar with the former, but they have info/leaflets etc that might help.
Good luck and hope it all goes well.

I don't know if this helps, but my mum had very similar ups and downs with thyroid all the way the way through her pregnancy with me, culminating in thyroid removal when I was just 3 weeks old.

She had problems from very early on and I am fine (graduate etc)

Hope all is ok xxx

Hi OP

Just wanted to give you some reassurance - when I was pregnant with dd2 my TSH jumped to 57 within a week of me falling pregnant, and it took some time before I was put on levithyroxine. Dd2 is 3 now, and a. Dry healthy and happy little girl!
Good luck.

Thank you very much everyone. I feel much better today in the cold light of day. Hope I'll get more sleep tonight.

X

Hi Lucy

I had my thyroid out, going from over to under active, within 6 days of falling pregnant. I've been under the care of a private, now back to NHS Endo. I have a telephone clinic every 3 weeks with an endo nurse. So get it checked up now and be demanding about it.

The good news is that I had one high TSH result owing to taking my levothyroxine (am on 225msg per day) with my Pregnacare and Vit D (DO NOT TAKE THEM TOGETHER) and have looked into your exact concern.

Anyway, as a result, I ended up stalking refusing to leave without seeing specialist drama queen moment having a chat with the lead endo consultant at UCLH in London. Between my sobbing and hysterics she managed to convince me that all would be well and that the science and medical journal articles (which I had read obviously) weren't conclusive AND THAT ALL WILL BE WELL.

Relax, enjoy your 20 week scan and make sure your midwife is aware and can keep an eye on growth.

x

Thanks Becca. You sound like a women after my own heart. Why oh why do we have to make such a fuss to get taken seriously.

Lucy

hi there! I've been diagnosed with hypothyroid when i had a chemical pregnancy last year. My endocrinologist told me not to try until my levels got bqck to normal. Now on thyroxine, I conceived. Initially the levels rose (and so did my dose) however the doc. said not to worry if something was to go wrong, i would've lost the baby by then. The baby derives its thyroxine first from the blood. That's why we moms-to-be get deficient and have to increase our intake. after the first trimester the levels come back to as they were for you and the doc. said he would decrease my doseage. However if you are more worried, wait for the 20 weeks scan. It will reveal everything you need to know. Don't worrt though. Nature usually discards anything abnormal by itself mostly by the end of the first trimester. You'be passed that. Things will be well. just keep your levels in check however.

I had an appointment with an endo and he actually said demand for thyroid may go up again in the 2nd/3rd trimester. He's testing my levels again next month to see. So make sure you get tested regularly so the dose is adapted to your needs rather than just assuming TSH levels go up first and then come down again!

Should be checked at least once every trimester, 4wks after any dosage changes AND at 36wks. Under treated hypothyroidism is linked with higher rates of complications at birth (and, you don't want to feel any tireder than you have to, for birth!)

Hi Lucy. I've just been referred to the consultant for my pregnancy due to having my thyroid removed years ago and being on thyroxine. I found it strange that they refer you to a specialist at 5 months really. She checked my thyroid function and increased my dosage. She said that babies can sometimes be born small or have a thyroid problem themselves if my dosage wasn't correct. But thankfully she said she had only seen 1 baby with this problem so we should be ok! There is a printout of your thyroid function readings during pregnancy so you can see yourself and have your blood test every 6 weeks like she told me. Don't worry too much it will hopefully be fine. I forgot to get my printout so I will get one in a couple of weeks. The normal readings don't apply during pregnancy.

Hi lucy
I had an over active thyroid that went under active when I feel pregnant. I was under an endocrinologist and had my altered accordingly. They were not overly concerned and my dd is absolutely fine. (Despite my medication not being altered for a few weeks whilst first pregnant as I wasn't aware I was pregnant!) I was worried about the iq troubles too. Dd is very bright though! Her speech is impeccable for her age (1) and she is happy and totally early

*totally healthy
Sorry.

Hi OP another who has hypo. The main risk is miscarriage which a pp has already said. I was put up from 125 to 150 thyroxine which is standard clinical guidance but you need to have it fine tuned with an endocrinologist - after I saw mine I went to 137.5 thyroxine. It differs for everyone. The main thing is to make sure you are 'cooking' the baby enough my consultant said . The T4 had to be at a certain level for my body to warm the baby. Amazing really. The thyroid fluctuates a great deal in pregnancy sometimes and if there was anything for your consultant to be alarmed by, they would have let you know :) try not to worry too much. My daughter arrived 9 days ago and was 3.5kg with a big head! Good luck :)