Pregnant with tsh of 16.04: I’m 4 week and 3 days... - Thyroid UK

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Pregnant with tsh of 16.04

Jhenderson profile image
24 Replies

I’m 4 week and 3 days and my tsh is 16.04. My doctor has increased my dose to 125mg from 100mg of levothyroxine.

Dr said tsh is an average over 10 weeks. My ivf clinic didn’t test my thyroid and when I went to the go they wouldn’t test it before treatment because I had tested in the last 6 months.

I feel so let down by the nhs and the private sector. I’m so concerned that the baby will stop developing. Is there anything more I can do? Last November baby stopped growing at 6w2days, they don’t know why.

What are my chances of miscarrying? My free t4 is 15.6.

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Jhenderson
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helvella profile image
helvellaAdministratorThyroid UK

For a doctor to say: "tsh is an average over 10 weeks" is for that doctor to admit ignorance at the level of incompetence.

It sounds rather like an interpretation of a TSH test as if it were the HbA1c test (used for diabetes). That is absolutely inappropriate and wrong.

"My ivf clinic didn’t test my thyroid" is another example of what I consider gross negligence. IVF clinics should always check thyroid levels. And that don't, for each and every patient, should lose their licence.

Me ranting doesn't do you any good at all. What you need to do is get to see another doctor who understands. An increase from 100 to 125 micrograms is the sort of level that should be done automatically upon confirmation of pregnancy - not in the context of significantly raised TSH. I don't want to make you think that I know what dose you need - I don't. Just trying to point out that it looks to me an inadequate increase in dose.

Jhenderson profile image
Jhenderson in reply to helvella

I’m ringing the early pregnancy unit this morning to speak to a mid wife or doctor that deals regularly with pregnant women with hypothyroidism. Hopefully they will reassure me and give me advice on what dose I should be taking.

The doctor made a blanket statement that increasing my dose too much could have a damaging effect on the developing baby. I didn’t ask how. Do you know?

helvella profile image
helvellaAdministratorThyroid UK in reply to Jhenderson

With thyroid, too much or too little can adversely affect you and a baby. No, I am not familiar with the details of the impact of over-dosing and would have to search for decent information.

SlowDragon profile image
SlowDragonAdministrator

Essential to test B12, folate, vitamin D and ferritin too

Good levels of B12 and folate required for baby's development

Jhenderson profile image
Jhenderson in reply to SlowDragon

I am on pregnancy vitamins for all these things. Can you tell me how a TSH of 16 could affect my levels of B12, folate and Vitamin D as I feel that my concerns and requests are dismissed. By having a reason to have these tested I feel they may be more receptive to testing them. Thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Jhenderson

When under medicated with high TSH vitamin levels tend to drop as result of being hypothyroid

Politely insist they are tested, B12 and folate especially

Alternatively order Medichecks or Blue Horizon tests

Jhenderson profile image
Jhenderson

So an update, I rang the early pregnancy unit and spoke to a midwife. Straight away she said that was too high, an increase of 25mg wouldn't survice. She's going to speak to the doctor and get back to me about how much I need to increase my dose by.

I feel so let down by my drs practice, I don't trust any advice or treatment plan they give me now or in the future. I am so worried that this pregnancy is doomed now because my tsh is so out of wack. Can anyone reassure me?

diogenes profile image
diogenesRemembering

The only good thing about this is that you are in very early pregnancy, so that urgent action can restore things to a better state. By T4 treatment, you should get TSH down to less than 1.5. FT4 should be in midrange at least. TSH below 0.05 and high FT4 indicates over treatment. I must echo everyone else's condemnation of the unprofessionalism of those who are supposed to be supporting you.

jdunn profile image
jdunn

I would contact a endocrinologist and have them test your thyroid. That's what I do with my IVF. And then you can bring your blood test results to your IVF appointments.

Jhenderson profile image
Jhenderson

The early pregnancy unit has got back to me and the doctor says to increase my dose to 175mg and test in four weeks. What the best way to get your blood tested? Do you take the tablets after the blood draw to get a more accurate reading they’ll be testing tsh and t4 I think. Thanks

SeasideSusie profile image
SeasideSusieRemembering in reply to Jhenderson

Jhenderson

We always advise

1) Early morning blood draw, no later than 9am. TSH is highest early morning and lowers throughout the day.

2) Fast overnight, as in have your evening meal as normal, delay breakfast on day of blood draw until afterwards. Eating can lower TSH. You can, of course, drink water.

3) Leave off Levo for 24 hours as this will give a more accurate level of normally circulating hormone. Leave off any longer and you get a false low FT4, take before blood draw and you get a false high FT4.

Huzat profile image
Huzat

It may be a topic for discussion generally but it hardly seems appropriate on this thread.

edit to add - this comment relates to a removed post.

Jhenderson profile image
Jhenderson

You won’t believe this; just got a phone call back from the surgery. The consultant endocrinologist has gotten back in touch with the gp and advice to stay at 125mg as ft4 is in normal range and to test again in 4 weeks. I explained the dr at the early pregnancy unit said to increase to 175mg. I’ve rang the early pregnancy unit back to inform them of the consultant endocrinologist advice. I think the early pregnancy unit doctor should speak to the endocrinologist, they both work in the hospital, then come up with a plan.

I can’t believe that you can get different pieces of advice from 5 different Doctors.

My gut is to go with the consultant endocrinologists advice. What do you think?

p8400 profile image
p8400 in reply to Jhenderson

how are things going now? I am concern about high TSH 12.45 at my 3 weeks preg, can it affect IQ of my unborn? i was on synthroid and now they have increased the dose.

Jhenderson profile image
Jhenderson in reply to p8400

I had another blood test. It is four weeks since they increased my dose to 175mg and my tsh is 2.11. I think they want it below 2. Xx

p8400 profile image
p8400 in reply to Jhenderson

Did they mention how much TSH is really a risk for unborn?

Why are they not adhering to the guidelines for TSH in pregnancy? It should be under 2.5. I'd mention that and the word "sue" if you have complications because of their negligence, and put in an official complaint.

helvella profile image
helvellaAdministratorThyroid UK in reply to Angel_of_the_North

And try to get everything in writing.

Jhenderson profile image
Jhenderson

Perhaps read my original post again. I posted for reassurance, from supportive people. If you have nothing supportive to say, please do not post nonsense on my feed. My concern is getting the correct treatment to protect my unborn child, I don’t appreciate your input you clearly have nothing constructive to say, so please don’t comment anymore nonsense on my feed. This forum is open for your question it may be a valid question for you but it’s definitely not appropriate or valid to ask or begin arguing with me on my feed. I have enough to worry about with out some thoughtless person implying that my child may develop autoimmune diseases from me. I’m sure you didn’t mean to upset me and if really appreciate not another word for you. 🤫

Jhenderson profile image
Jhenderson

Perhaps read my original post again. I posted for reassurance, from supportive people. If you have nothing supportive to say, please do not post nonsense on my feed. My concern is getting the correct treatment to protect my unborn child, I don’t appreciate your input you clearly have nothing constructive to say, so please don’t comment anymore nonsense on my feed. This forum is open for your question it may be a valid question for you but it’s definitely not appropriate or valid to ask or begin arguing with me on my feed. I have enough to worry about with out some thoughtless person implying that my child may develop autoimmune diseases from me. I’m sure you didn’t mean to upset me and if really appreciate not another word for you. 🤫

tee27 profile image
tee27

Do you see an Endocrinologist at the hospital as part of your antenatal care, for both of my pregnancies I did and also my daughter does presently. I have congenital hypothyroidism and was on around 20th get daily, however my daughter has aquire hypothyroidism and she was only on 15 for first pregnancy, but they messed around with it a lot between 125 and 150. This pregnancy they have just told her to start taking 200. But she did have a low birth weight pre last time so perhaps a boost is to help with growth. Either way, she be seeing an endo at hospital as well as midwife.

Jhenderson profile image
Jhenderson in reply to tee27

My endocrinologist said to increase to 125mg which I said at the time wasn’t enough. The consultant in the maternity unit agreed with me and said it needed to be 175mg to get it under control. This time the consultant in the maternity unit knew better I suppose as he deals more regularly with pregnant women with thyroid problems. It was a very difficult decision but I’m so glad I didn’t go with the endocrinologist advice as 125mg wouldn’t have cut my tsh levels enough!

tee27 profile image
tee27 in reply to Jhenderson

Sorry you have probably already said but do you have acquired or congenital. this seemed to make a difference to our levels. but yeah, I would usually stick with the Endos in maternity. although it would help if they didn't just keep presuming that we are diabetic just cause its the same doctors, makes you feel like they are not actually looking at your notes at all.

tee27 profile image
tee27

Sorry, it meant to say 200 -250mcg daily, for me.

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