I was diagnosed with Graves in 2022. I've been on Carbimazole since then. Currently stable on 5mg daily have been for around 8 months. In June 2024 my trab was down from around 7IU/L in 2022 to 1.1IU/L. We retested again in December and trab was 1.3 IU/L, TSH 1.59 and T4 15. The doctor has decided to keep me on Carbimazole for the next 6 months.My main question is the safety of trying to conceive on such a small dose of carbimazole. Everywhere I read states that even on PTU there is a risk of fetal abnormalities. And that the risk of abnormalities with carbimazole was recorded at 15mg daily dose.
My consultant was dismissive of my questions and just told me to go on PTU, regardless of my concerns. I really struggle to believe that my health is the consultants best interest when you can tell they are in a hurry to get off the call. I haven't seen a doctor f2f since 2022.
Can anyone recommend a private endocrinologist that can offer me advice on my graves and also advice around pregnancy whilst on medication?
TIA
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Romina86
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Do you by any chance have any pre-conception advice services in your area?
It is all too easy for us to search and find all sorts of things online. While I can see that there are questions about carbimazole, and the most common advice is to switch to PTU, I think you need better than that.
And an endocrinologist might not be the best person to ask. Possibly an ob/gyn with genuine experience would be a better bet?
This is just a suggestion and not based on proper understanding and knowledge.
Thanks for your reply! I also believe that switching to another drug isn't so black and white in my case.I wonder if there is a endocrinologist/obs/gynae, I wouldn't know where to look. Will keep searching, will look into pre conception advice.
there’s alot of thing to think about trying to conceive with Graves’ disease. I would recommend trying to find a pre-conception clinic, I have multiple health conditions including graves and diabeties and I’m with the diabetic maternity team already and have spoken about what needs to happened before trying to conceive this is including switching to PTU, where as when discussing with my endo he would rather I have RAI or surgery as my thyroid isn’t where he would like it after nearly 3 years.
Thanks Zoe, Will definitely try and find a preconceptions clinic! My endo briefly mentioned surgery or RAI but that is something I do not want. I don't want to be hypothyroid if I can avoid it. Would rather be on carbimazole long term.
My maternity team seem alot more on side for switching to PTU rather then having definitive treatment ☺️ so would definitely recommend trying to find someone who can give advice as a whole rather then just an endo!
Personally, I had strong negative reaction to carbimazole even at 5 mg dose ; my thyroid grew to a large lump internally and had to be removed. I put its growth down to if being starved of iodine. Getting the right amount of iodine is very tricky, just read an article about iodine overload in processed foods , salt and animated, with a recommendation to avoid and source your foods carefully. socially eggs. Good luck with your research; you are doing the right thing by asking questions. All the best .
Relatively few UK products are manufactured using iodised salt. (Though some from Poland and Germany are more likely to have it.)
And hardly any UK salt is iodised.
Unless you go for the more obviously high iodine foods (such as seaweeds and other seafoods), and supplements, I suspect it most of us in the UK would be unlikely to overdose on iodine due to diet.
That’s reassuring . Thank you. However, how do we know how much iodine is in animal feeds? Apparently, there is a lot of it in US and noting that we copy what US does, how can we be sure? Extending the argument, I am horrified to see, for example how many additives are put into our food to prolong shelf life. I have not found a single cake this Christmas that would not have preserving chemicals in them. M&S used to do them but not anymore. Ended up baking my own ( easier done than you think). We live in an industrially produced food era and don’t know the effects of it on our health, save for the message to avoid ultra processed foods.
We know that milk, organic and non-organic has a fairly stable iodine content. That would tend to imply that the iodine content of feed (whether grazing or manufactured) is controlled.
The use of iodine-based teat disinfectants has reduced, maybe even disappeared?
I cannot speak for pigs, sheep, etc.
And, of course, speciality products like salt-marsh lamb, or from cattle which wander on beaches, might have higher levels.
Erythrosine, a red colouring agent, has pretty much disappeared at least partly because it had a high iodine content. Erythrosine is used exclusively in cherries (and some medicines).
But I saw some seaweed crisps recently with high iodine content (over 1 milligram in a family bag, if I remember correctly) - clearly stated on the packaging but easily missed.
Apologies for typos in my previous response. I meant to say that there is an overload of iodine in animal feeds , salt and processed foods so we should avoid such products and be especially careful with eggs. I am not sure how does one check all this but I suppose the more expensive eggs from reputable source might be a start .
Having read a post or reply, I've noticed that you might wish to correct your post or reply. For example, you might have followed up with a reply to correct a mistake.
If you edit your post, the follow-up would not be required. Making it easier for people to follow.
This is not to say you have done anything wrong. This is meant to help you by pointing out this option, and help you to do so, not to criticise.
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Thank you for your response! You’ve given me a little bit of hope ☺️ it’s such a tricky disease to manage but stress is a huge factor for me and I’ve tried to eliminate it as much as I can 😂 we’re getting there slowly! I’d rather not destroy my thyroid but sometimes these doctors make us think it’s the only option x
Hello just sharing my experience with graves diagnosed 3 months ago. I am on treatment dose of PTU currently and not tried carbimazole as they put me straight on PTU when i mentioned pregrancy plans. However i am not trying to get pregnant yet until i get to maintenance dose. My T3 and T4 levels have just come back normal so I asked for a review. I'll update my profile soon with the latest results. With regards to your medical team,this could be tricky but they way i am trying to manage thyroid and conception plans and later pregnancy is with an endo who specialises or at least has a high interest in thyroid and pregnancy. You can look up many doctors profiles in your area online, as they usually split time between private and NHS. When I saw an endocrinologist (ended up private this one time as my wait list is very long) she said once T3 and T4 are stable, dose of PTU (in my case) is low and conceived I should be monitored by a specialist multi disciplinary team of endocrinology and antenatal. If you are not automatically given that support keep asking for it. Thankfully I know when my turn does come on the NHS I was lucky to have already been assigned a doctor who has interest and experience in managing graves in pregnancy. Best of luck in your journey ❤️
PS neither drug if free of risk, but risks with PTU are considered to be less severe and in either case of PTU or carbimazole your doctor should weigh up the risks of medicine vs high thyroid levels to baby and you and keep you on lowest effective dose for your thyroid levels. Hope it helps. I found British Thyroid Foundation advice on pregnancy really informative.
Forgot to say I think they should monitor T3, T4 , TSH and Trab levels throughout pregnancy for different reasons to inform the decisions. Maybe every 4-8 weeks depending on each case. But someone may want to correct me on this. Only saying because from reading some posts on here it seems the type of test administered varies depending on practice and these do not come as a standard package. E.g I had to ask for my Trab (TSI antibodies) to be done at the beginning of diagnosis, as my GP didn't realise it needed to be ordered separately. Other people say that some practices do t4 without T3, so check with your practice what they are measuring and why.
Thanks for you comment! Yes I believe I am stable and on a low dose of Carbimazole. My query is if the dose of carbimazole is low enough for me to TTC. All the papers I've read state higher risks using carbimazole at 15mg vs PTU. I don't want to risk switching to a higher dose of PTU and also risk the side effects if my dose of carbimazole is low. Would you be happy to share the name of the doctor you saw privately?
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