Underactive thyroid and pregnancy - NICE guidelines

Bumping this because - during a round of tests to discover why I'm feeling so crap at 34w- I have what are supposedly normal thyroid results - see below, only just within nhs range according to lab results. I understand that - actually - these aren't great for pregnancy but gp not bothered and didn't mention it. I haven't been diagnosed with hypothyroidism before pregnancy, though have always thought might have it (ie results for Tsh historically on higher range; I have classic symptoms).

Ts4 12.9
Tsh 3.97

Does anyone have any advice about what to do, or reassurance that all is ok? I'm very worried that this has been overlooked and impact it could have on the baby. I realise that this might be a bit ott but feel so crap at the moment that I can't imagine it's great..,

Thanks counting - I do know all of this, just can't get gps to listen!

Well, I think I have now. I spoke to another gp today who rang endocrinology who said raise by 25. She has then said it will be through 'high risk' obs care. My concern is that last time, I didn't get to see them till 13/14 weeks when I had my scan. Then, the gps had been great at helping me to raise my thyroxine however it was never quite enough.

This time they're sort of passing it over to high risk, but I'm not convinced that will happen soon enough- we shall see. Mw care has changed now as they visit your house first.

Gp said if appointment hasn't come through in a few weeks they can retest etc. She said endo team said to keep below tsh 3 (though I'd prefer a bit lower).

Which ever calculations I do +25 is not enough, but I guess it's very early days right now. Including if I do what some do and they do in the us which is to take a double dose twice a week.

I might go back in 2 weeks to discuss either another raise or a test.

I honestly though it would be easier this time!

Yep and so important to keep testing throughout.

The further along in your pregnancy the more your baby needs from you. My specialist also said it's important to be tested after birth as well as a lot of the symptoms of your levels being skewed will be mistaken for normal postnatal symptoms so try and keep that in mind at the end!

counting your experience would seem to be the correct one.

If it still pregnant next week I'll ask gp to specifically speak to endocrinology as per the guidelines.

When she rang back she said it's only preconception to refer (clearly that hasn't happened!) but if you look further down it says urgently when positive test!

*violet my gp told me but she had already spoken to the specialist team at the hospital because my levels weren't in the "normal" range when I was trying to conceive (I was trying for over a year and I think this was one of the reasons why).

Glad to hear all us well garden!

Sorry, gp said not to raise by 25 now though I understand you just do with a positive pregnancy test.

This didn't happen last time and then I spent the first trimester chasing the tsh levels every two weeks and by 12 weeks it was still out of range!

Thank you counting, garden and honey.
*
Counting,* who told you to increase by 50%?

Gp has said don't raise as at all till blood test which was just now, but that's not the guidance I know! I've raised by 25; I know I had to raise by a lot last pregnancy. And extra 25 is only 20%. 50 would be about 40%.

I called the British thyroid foundation too who confirmed this too (they check with consultants).

I think I'll have to take print outs again to gp next week after results and ask for her to check with endo if it should be 50 or not.

I'm pregnant and have had thyroxine throughout my pregnancy. I've had 4 weekly bloods and was told to increase by 50% immediately after a positive pregnancy.

I'm also seen by the endocrine consultants at my hospital and have done since I was 10 weeks pregnant.

Hope all goes well for you x

Violet I went from 75 to 100ug in my first pregnancy, and have been at 100 since as well. When I got my 2nd BFP I phoned to ask for a blood test which is finally this week (I am 8 weeks). My GP wasn't sure and thought my midwife should sort it but that's not really something they do round here.

I am rather hoping that because I am still on the elevated dose, all should be well. Mostly as this was the soonest blood test I could get so not much I can do. I only have 100ug tablets so can't just take more without doubling my dose!

Argh ffs. Gp says not to increase t4, has spoken to obstetrician who said to take blood test now but not raise. She refuses to check with an endo. Despite nice saying specifically to do so!

@Tootsiepops too - I just wondered if you had any more advice too?

I pointed out it says to refer to endo but she didn't seem keen!

Hi @gardenbirdy - I'm just 4 weeks pregnant. I just saw the gp brandishing the nice guidelines and she said she'd ring an obstetrician (I need to check about aspirin too) but she was (as usual) clueless about thyroxine though extremely lovely.

Did you raise by 50% immediately? My tsh was already quite well surprised at 0.54. I've raised by 25 but 50% for me would be a little over and extra 50 daily. Just wondering how things panned out during the first trimester, blood tests and how much you went up by.

It was tricky in my first pregnancy and I was tsh 13 by 12 weeks despite 3 raises! But we didn't start raising until I was 6 weeks.

Ive only just seen this - but great links and I'm so glad to read of this outcome!

The BTF are running a campaign to increase awareness. Their info page.

www.btf-thyroid.org/projects/pregnancy

www.bbc.co.uk/programmes/b04kbl8w

tootsie I had a similar battle brandishing nice print outs too!

There's a really bad gap from conception to 12 wk scan. Booking midwives at 8 weeks know nothing in my experience and it's actually too late by 12 weeks. The key is the first trimester.

• "Women with known thyroid dysfunction who are taking levothyroxine may need the dose increased by 30–50% from as early as 4–6 weeks gestation De Groot et al, 2012]."

Taken from here- Did you find this?
//https://cks.nice.org.uk/hypothyroidism#!scenario:3//

Author of BMA patient book on understanding thyroid disorders is A Toft who wrote the Lothian links.

As spare says (and BMA book says) increase by 25 but you will probably need to go up by 50 eventually. The Lothian advice is the most detailed.

Gps also refer to patient . Co .uk.
For reference. http://patient.info/doctor/thyroid-disease-in-pregnancy

Garden my endocrinologist told me to go right ahead and increase my thyroxine myself as soon as I got pregnant. GPs barely know anything about thyroid disorders, and in fact when I did get pregnant, my GP told me that they would take a 'wait and see' approach to adjusting my dose. We had a monumental argument about that one

They key thing you need to point them to is "Patients with established hypothyroidism should have T4 dose increased by 25 micrograms as soon as a positive pregnancy test is found. Further monitoring after 2 weeks and possible further changes in T4 dose may be required to ensure FT4 is 16-21 pmol/L; TSH

I found this while looking for nice

www.gp-update.co.uk/files/docs/Hypothyroidism.pdf

This is it

www.thyroiduk.org.uk/tuk/guidelines/Lothian%20Guidance%20for%20Diagnosis%20and%20Management%20of%20thyroid%20function%20in%20pregnancy.pdf