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Underactive thyroid and pregnancy - NICE guidelines

(27 Posts)
Gardenbirdy Sat 12-Nov-16 07:19:23

I've just got my bfp after three miscarriages and (finally!) a diagnosis of underactive thyroid.
So I'm going to my gp on Monday to ask about adjusting my medication as my tsh level was 4 the last time I had it checked, and I know it needs to be below 2.5 for pregnancy.
Could anyone post me a link to the NICE guidelines? My googling hasn't come up with the right ones and I want to have some backup if my gp tries to brush me off with "oh but 4 is normal".
I've lost 3 babies so I'm going to fight for this one! TIA

pinkpostitnote Sat 12-Nov-16 10:15:18

http://www.nhslothian.scot.nhs.uk/Services/A-Z/DiabetesService/InformationHealthProfessionals/MUHEndocrineManagementProtocols/007c_Thyroid%20Function%20Testing%20in%20Primary%20Care%20Guidance%2017.10.08.pdf

This is from NHS Scotland. No, 4 is not fine!

There are two radio 4 progs on inside health relating to it too, I'll try to dig out.

pinkpostitnote Sat 12-Nov-16 10:16:14

Sorry, that's the wrong one. There's a pregnancy one somewhere.

pinkpostitnote Sat 12-Nov-16 10:17:21

This is it

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

pinkpostitnote Sat 12-Nov-16 10:19:45

I found this while looking for nice

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

sparechange Sat 12-Nov-16 10:21:12

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 <2 mU/L as quickly as possible."

congrats on the bfp flowers

Gardenbirdy Sat 12-Nov-16 10:22:53

Thank you all! X

Tootsiepops Sat 12-Nov-16 10:27:21

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 grin

pinkpostitnote Sat 12-Nov-16 10:35:04

•"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

pinkpostitnote Sat 12-Nov-16 10:38:18

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.

pinkpostitnote Sat 12-Nov-16 10:38:30

http://www.bbc.co.uk/programmes/b04kbl8w

pinkpostitnote Sat 12-Nov-16 10:39:51

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

http://www.btf-thyroid.org/projects/pregnancy

Gardenbirdy Tue 15-Nov-16 07:14:00

Just an update for those who posted: my gp was fab, upped my dose by 50% without quibble, advised me to see the midwife at 6 weeks rather than the usual 8. He said to get my levels checked again after Xmas but to make sure to ring the surgery as he's going away for Xmas and wants to make sure the results go to him and not one of the others. Faith in gps restored!

booox Tue 15-Nov-16 09:05:05

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

booox Mon 06-Mar-17 10:44:45

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.

booox Mon 06-Mar-17 10:46:46

@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!

booox Mon 06-Mar-17 11:45:22

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!

honeysucklejasmine Mon 06-Mar-17 11:53:59

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!

countingdown2gin Mon 06-Mar-17 15:08:27

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

Gardenbirdy Mon 06-Mar-17 15:34:55

Hi Violet! My gp did raise it immediately but I was only on 50mg and my tsh was 4 at that point. I was also very very keen to manage it as early as possible after having three miscarriages. It sounds like yours is a bit more under control than mine was!

After my 12wk scan my tsh was still 4 so the consultant increased it again to 100mg daily, and also recommended that I stay on a higher dose after giving birth.
Just had 20wk scan and another blood test so waiting to see if it needs to go up yet again. Delighted to have got this far :-)

booox Mon 06-Mar-17 16:10:41

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.

booox Mon 06-Mar-17 16:12:18

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!

booox Mon 06-Mar-17 16:16:33

Glad to hear all us well garden!

countingdown2gin Mon 06-Mar-17 16:49:38

*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).

booox Mon 06-Mar-17 16:53:32

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 hmm (clearly that hasn't happened!) but if you look further down it says urgently when positive test!

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