Staying on Carbimazole long term or permanently

[Avo24]

Hi,

I’m totally new to posting anything anywhere . I am really pleased to find the Thyroid UK site.

I’m hopeful that someone can share some knowledge about staying on Carbimazole long term or permanently or have experience of going in to remission after a long period of taking the drug.

I was diagnosed with having Graves’ disease and I’ve been on Carbimazole since August 2022, apart from 2 months early on, I’ve been on 1- 5mg pill per day.

Since my last consultation with the specialist in September 2024 I have gone down to 1-5mg pill every 2nd day and my levels TSH and free T3 and T4 have still stayed in the normal range.

At the consult the doctor recommended Radio Active Iodine treatment as a definitive treatment and said that I would no longer have Graves and made it all sound very simple and straight forward. I was already very hesitant about RAI treatment and am even more so now after reading posts here about the troubles people have after it. She then suggested that I drop the dose to every 2nd.

I would be super pleased to hear of anyone’s experience staying on Carbimazole instead of doing the RAI or knowledge of any useful information.

Many thanks from New Zealand

[pennyannie]

Hello Avo and welcome to the forum :

Well - as Graves is an Auto Immune Disease and there is no cure for an AI disease - has this consultant some special power ?

The definitive treatments of RAI or a thyroidectomy simply disable / surgically remove your thyroid - you become primary hypothyroid and reliant on other medication for the rest of your life -

You sound well managed on the AT drug - I'd just suggest you look to maintain your core strength of ferritin. folate, B12 and vitamin D at optimal levels as if these are low - though likely in range - this alone can compromise your health further than necessary.

The most well rounded of all I researched - post RAI thyroid ablation and more ill than I'd ever been in my life - is that of Elaine Moore - books and website - elaine-moore.com

You might like to share / discuss the most recent research with your consultant -

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

[Avo24 in reply to pennyannie]

Thanks so much for your reply.

I’ve only been tested for vitamin D because I knew of that one and asked, there has been no mention of the others so will ask for those also.

I think the endocrinologist thought I would just agree to the RAI and that would be that. I haven’t had any problems with the medication and am more than happy to stay on it if it is safe.

I will have a good look at the places you suggested.

[pennyannie in reply to Avo24]

Sadly, I believe, some consultants work to hospital guidelines which are not necessarily in the patients first best interest so suggest you copy the research papers so the endo can have a copy if s/he isn't aware of the latest research and is then better informed and understands your reasoning.

[asiatic]

I stopped Carbimazole recently after 8 years on Block and Replace and am now “ hypo Graves “ It would be good to know if your Antibodies have reduced before suggesting you stop and check for Remission. If you relapsed you could restart Carb. on the assumption if it worked before it will again. Should you decide to stay on it a bit longer after reading the latest research pennyannie directed you to , it would be better to half the tablets for a more even dosage of 2.5 mg. daily

[Avo24 in reply to asiatic]

Many thanks

[SusaM]

I was taking Carbimazole for 12 months for Graves' disease and it was very effective. But I have been off the medication for 1 year now and Graves' seems to be going into remission, as it did for my mother a few years ago.

The consultant told me that it can come back at any time, especially in circumstances of emotional stress, but after 1 year everything seems to be going very well, so I am not worried. I have increased my physical activity levels considerably, improved my diet and have overcome very stressful events, so I hope to continue like this for some time. My mother never had a second episode, so I'm hoping for the same.

Don't be in a hurry to remove the thyroid as sometimes the body can heal itself.

[Avo24 in reply to SusaM]

Thanks for your reply

[KatieG12]

Hi,

I have been taking carbimazole since 2019.

I have had periods off it but I always relapse and go hyper.

Now I stay on 5mg per day, I have no known side effects from taking the medication. My endo occasionally checks my antibodies and says they are too high and I’d relapse if taken off the carbimazole.

Initially the consultant used to push the idea of RAI, but now he says it’s my choice. He says there are two risks, agranulocytosis which you probably know about, and rarely it can affect your pancreas (you’d know about this, it would make you very ill but would resolve if you stopped the meds).

I think the other risk is heart related, changing thyroid levels can trigger off irregular rhythms. Whereas after RAI you’d be on a steady dose of thyroid meds, less fluctuations so the risk is lower.

This is the one that concerns me most, however I am so well on carbimazole that I feel reluctant to have the RAI.

I once had a lovely female endo, I asked her what she’d recommend if it was a family member and she said RAI because of the heart risks.

None of this probably helps you! But I am having the same dilemma , so will also follow the answers to your question with interest.

[Avo24 in reply to KatieG12]

Thanks

[Avo24]

Thank you. It certainly seems as if it is not easier after RAI. I feel well and easily tolerate the medication.