Hi there, Thanks for all your advice on conception and pregnancy in the past. So far I've managed to maintain the pregnancy! I have a new issue though...
I'm on levothyroxine 150mcg and had been at that dose for 6 weeks before conception. I had a blood test done immediately on positive pregnancy test and the values were TSH 0.16 (0.27-4.20) and fT4 21.2 (10.50-24.50). I spoke to a GP before I had these results back, telling her about the advice to increase dose by 25mcg on positive pregnancy test. She agreed that I should increase the dose, which I did for a few days, but as soon as I got these results back I spoke to a different GP who advised to keep my dose at 150mcg. This has been working well throughout the pregnancy (judging by the fact I haven't miscarried yet and had an early scan a a heartbeat was found). I then booked in my blood test for 4 weeks later, which I was advised to do throughout pregnancy (testing every 4 weeks rather than 6 weeks) as the need for thyroxine increases up until around week 16 when the baby can start making its own.
NHS decided they wouldn't test my fT4 as apparently they don't do this during pregnancy. According to the GP they only test TSH in pregnancy (wtf?). So now I have no idea what my T4 is doing but my TSH is at 0.1. The GP has told me to immediately decrease my dose to 125mcg as I'm now 'hyperthyroid'. Of course, I'm not hyperthyroid, as when my last T4 was tested it was within range, and I have no symptoms of being overmedicated. If anything I have hypo symptoms as I'm feeling absolutely exhausted with aching joints and dry skin, although I know these might be symptoms of pregnancy.
I don't know what to do now. I'm scared to lower the dose, especially as the foetal need for thyroxine should be increasing over the next 7 weeks or so. I agree that once I'm past that mark I might be able to lower the dose but i'm really scared to do it before. Does anyone have any thoughts or advice for me?
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hashihol
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Thank you I will try and get that done. I feel like a pin cushion at the moment as I had a blood test just before these results which the NHS refused to test as it was 4 weeks to the very day that I'd last had it tested and they wouldn't test within 4 weeks. So then I got it done 2 days later and they did test it (apart from the T4). I got my ferritin tested at the same time which had been previously within range but towards the lower end at 39. It's now improved such a lot due to supplementing and it's at 102.
Last time I had other nutrients tested was in March and were all fine except B12 a little high. Folate: >19.8 ug/L (>3.9), B12: 150 pmol/L (3.75-150), Vitamin D 140 nmol/L (50-200).
Refuse to lower the dose unless the FT4 is tested. Remind your doctor she is there to advise you, not dictate to you. I very much doubt she knows anything much about thyroid, and especially not during pregnancy, so it would probably be folly to do as she says. There must surely be something about it in NICE guidlines, no?
You're right, she absolutely has no idea and then tried to explain to me that it's very complicated and that I don't know how TSH and T4 works (as if I don't know exactly). It was more like she was reassuring herself whilst talking me through what these values meant. This is the same GP who tried to increase my dose when my TSH and T4 results were very similar preconception (TSH: 0.24 and T4: 20) and now she's trying to lower the dose! Craziness! I think I'll make an appointment with the other GP when he's available and ask for a second opinion. He at least listens to me and phones the endocrinologist for advice when he admits he doesn't know what to do. The NICE guidelines unfortunately just say that pregnant people must be monitored during pregnancy (which the GPs don't seem to be able to do). The first time I was pregnant and miscarried they didn't even know my TSH was supposed to be below 2.
Is a GP really the best doctor for you at this time? Any chance of finding a knowledgeable endo or a gynaecologist in your area who can supervise for the rest of your pregnancy? I also think your GP has no idea what she is talking about. You definitely seem more knowledgeable than her🙂
It's so tough because I'd really like to see a private endo but we just can't afford it. I looked at one who was £125 just for the initial consultation, not including any bloods or a follow-up.
Apparently at my first midwife appointment, which is on Wednesday, they will chat to me and see if I need to be referred to an obstetrician/gyneacologist. Annoying because I actually phoned the midwife way back at the beginning of pregnancy asking if I could be referred as adequate thyroxine is most important in the first weeks of pregnancy. She told me that I don't need to worry about it and everything will be fine (classic, you're just a crazy pregnant woman whose hormones are getting the better of her) and that they would refer me at 10 weeks if my thyroid levels were not within range or under control by my GP.
It's so frustrating. It's as if there is no evidence to show how important these things are to get right in early pregnancy. But I've read clinical trials and meta-analyses on this issue and they seem to think I'm at home all day on mumsnet getting myself upset about things I don't need to worry about!! So frustrating. Grrrrrrrrr 😖
That incompetence is incredible!!! If you are a midwife, at least you should know how pregnancy affects your thyroid hormone levels and needs! Isn´t it general knowledge that you need more thyroxine in the early stages of pregancy?! I am at a loss for words.
I also have an update to this post. My GP told me that my T4 hadn't been tested and that they don't look at this during pregnancy, only TSH. This is honestly what she told me. I called the GP reception today to ask for a copy of the results, which I always do and keep on file for myself. I got them through and lo and behold, they HAD tested my T4, the GP had actually lied and said they didn't.
My fT4 is at 19.6pmol/L (10.50-24.50) which is actually a decrease since 4 weeks ago which was 21.2. I can't believe she lied to me and told me I'm now 'hyperthyroid'. If my T4 is within range how can she say I'm hyper? I just can't believe it and I'm at a loss for what to do.
I'm afraid it doesn't surprise me at all. They do lie. I've had proof enough of that. They lie to cover up their own incompetence. She's obviously way out of her depth with all this, and if she doesn't even know that a low TSH on its own isn't proof of hyperthyroidism - and incidentally, that if you're hypo you can't 'go hyper' - and that you're only over-medicated when your FT3 is over-range, then there's no hope for her. You really have to find someone else to over-see your thyroid during your pregnancy because this one is going to mess things up big-time.
If I were you, now that you have proof that she's lied to you, I would lodge a formal complaint with the practice manager. She cannot be allowed to continue like that.
How should I manage a woman who is preconception or pregnant?
Arrange a referral to an endocrinology specialist for all women with overt or subclinical hypothyroidism who are:
Planning a pregnancy
Check thyroid function tests (TFTs) before conception if possible.
If TFTs are not within the euthyroid range, advise delaying conception and using contraception until the woman is stabilised on levothyroxine (LT4) treatment. See the CKS topic on Contraception - assessment for more information.
Discuss with an endocrinologist if there is any uncertainty about initiation of treatment or what dose to prescribe while waiting for specialist review.
See the section on Initiation and titration in Prescribing information for detailed information on the initiation and titration of LT4 therapy.
Check that the woman understands there is likely to be an increased demand for LT4 treatment during pregnancy, and her dose of LT4 must be adjusted as early as possible in pregnancy to reduce the chance of obstetric and neonatal complications.
Advise the woman to seek immediate medical advice if pregnancy is suspected or confirmed.
Offer advice on sources of information and support, such as the British Thyroid Foundation leaflet Your guide to pregnancy and fertility in thyroid disorders.
Pregnant
Check TFTs immediately once pregnancy is confirmed, and interpret results using a pregnancy-related reference range.
Discuss urgently with an endocrinologist regarding initiation of, or changes to, dosage of LT4 and TFT monitoring while waiting for specialist review.
Thank you for this. I will try and point someone towards this info, however I just get gas-lit by GPs and midwives alike. I'm just stuck between a rock and a hard place.
My GP keeps telling me that I need to get the midwife to refer me to the obstetric endocrinologist and when I first spoke to the midwife she said the GP must treat me and as long as my results are within range and 'controlled' that I had no need to be referred. It's so frustrating!!! I have my first meeting in person with the midwife tomorrow and I will literally beg them to refer me. I just can't go on stressing like this, it's making me so unhappy. I'm hoping that if I tell them I had a miscarriage last time and my levels were absolutely not controlled by my GP and way out of range, this might convince them to refer me.
In my opinion you should definitely be referred. It's there in black and white. However, I imagine a referral could take weeks or more.. that's a real concern. So the gp should do the right thing. Or can you see a different gp?
Here's the British Thyroid Foundation leaflet on pregnancy:
Yes, you've hit the nail on the head. I'm so worried about how long this is all taking. I've been speaking to two different GPs within the same practise and I just make an appointment with whoever I can get soonest. The female GP is the one who's adamant I decrease my dose even though she has shown in the past (and even admitted on the phone that she doesn't really understand it). The male GP at least checks with the endocrinologist what he should do, but either way I just need to be referred to take the load off of them when they don't really know what to do. The problem is they keep saying that it's the midwife who must refer me. So I'm just crossing my fingers that at tomorrow's appointment I can impress on the midwife just how important it is to be referred asap. Don't know if you read above, but I just updated this story as it turned out the GP did have my T4 results after telling me that it wasn't tested. My T4 has dropped slightly so to me that's a clear sign I shouldn't be lowering the dose.
Please say you expect to have a 2-way discussion based on advice in thyroid guidelines. Ask her to show you what evidence she's basing a proposed decrease on. Put the onus on her to give you the evidence.
Here's Thyroid UK's guidelines to refer to. Can you print the best ones off (or save on your phone etc) to show her?
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