Is it bad for me to stay on Carbimazole indefinitely?

I have had Graves Disease for the past 3 years and have been on Carbimazole for most of that time. I am being constantly hassled by my endo to have RAI which I have constantly refused. They now tell me I am ruining my health by being a bit overactive and taking Carbimazole every day and that I must have my thyroid removed. I have been given an appointment to see a surgeon to have a total thyroidectomy and am very nervous about this as I feel fine at the moment, and have done for quite a while now. Everything I read and hear about having your thyroid removed seems to suggest you will be set on a path of constant health issues which would put me in a much worse state than I'm in at the moment.

Does anyone have any first hand experience here, and does anyone know if being a bit overactive and on Carbimazole is that bad??

14 Replies

  • Dr Toft who was President of the British Thyroid Association has views on this. If you email for a copy of the Pulse Article by Dr Toft on the use of carbizamole.

  • Thank you Shaws, I'll email her for a copy.

  • I felt better on carbimazole than I do 1.5 years post thyroidectomy. I had to stop because it messed with my immune system, but I understand this is rare. Sandra

  • Hello Sandywandy. Were you told you couldn't stay on Carbimazole? Jackie

  • I was taking it for about 2 years, but they didn't tell me to stop taking it until it upset my white blood cells- I was getting lots of low grade infections so they tested my blood. As above I think this is rare, but they tell you to watch for sore throats under side effects. This white blood cell side effect does mean you have to stop, but I am not aware of any other reason. Not an expert on this though as I now have more problems being under than over. At the time, I switched to an alternative, propylthiouracil (PTU) which I was fine on for a while. The endo also gave me some powders that they normally use to control cholesterol (Cholestyramine) powder which stops the T4 being recirculated. My levels came down again and I was much better for a while. I later had a reaction to PTU so agreed to TT on the basis they would promise to treat my symptoms not my blood test post op(which hasn't been the case more recently.) We are all different and I do seem to have developed reactions to all sorts of things since my Graves kicked in - sticky dressings, wheat and alcohol. My body tells me pretty quickly if it doesn't like something. Many get on perfectly fine without RAI /TT, some don't. I wish you well. Sx

  • My sister was on Carbimazole for about 3 years, went into remission for 11 months and Graves recurred. She also developed mild TED and was advised to have surgery or RAI ablatement.

    She had RAI and is now hypothyroid and very much more comfortable being slightly underactive rather than hyperactive. Her eyes look worse IMO and I've read that RAI is NOT recommended if you have TED.

    There was another post recently where the poster felt s/he

    was being bullied off carbimazole into RAI. The consensus was that treatment cannot be forced upon patients. Search the Graves category.

  • I do have problems with my white blood cells so I guess I am one of the few who have no choice :(

  • I have Graves and have been on Carbimazole for five years. I am now on 40mg Carb and 100mcg Levo because I went way too far Hypo after being way too far Hyper. So now am on block and replace at least for the next year and feel very good. I was being bulled into RAI and told I was going to have it, to which I replied I wasn't and, thus far, things are going well for me.

  • I'm glad things are going well for you. I feel better than I have since I got Graves so am so nervous about drastic surgery which could make things so much worse. Very much being backed into a corner by a team of consultants.

  • I was diagnosed overactive thyroid in April 2011 and put on Carbimazole 10mg, reduced to 5mg after 3 months with ongoing blood test monitoring.

    The Carbimazole was stopped April 2012 and all was good until blood tests showed that In October I had become overactive again! The hospital Registrar (arrogant/ignorant man) said I would have to have surgery or RAI and I refused both. Reluctantly he agreed to restart my Carbimazole 15mg this time and that's where I am right now. I have seen another doctor at the hospital and he suggested surgery or RAI telling me that afterwards "I would only need a little tablet daily after to keep me well, lol

    Don't be bullied into anything that you don't agree with. It's your body and your choice, so I wish you luck and hope you feel reasonably well soon. xx

  • My consultant is also a bullying arrogant man who tells me the same thing. Just a little pill then everything will be fine. Well from my research that is so NOT the case. I think I will stay on carbimazole, but I think I should arrange a liver function test as I have read it can effect the liver!!!!

  • my husband opted to stay on carbimazole he was offered the other alternatives., he got it down to 5 mg a day that was 20 years ago. he has been stable and well.. the doctor is now trying to wean him off the tablets slowly..

    I am not saying this is right for you but he is glad he decided to stay on the medication.

    Look into it more before you rush into something you might regret.

    There must be others out there who opted to stay on the did they get on ?

    Good luck .

    Browen x

  • Good luck Jess, you learn to listen to your body with a thyroid condition so do what you feel is right for you. We all have good and not good days and it's good to share experiences and thoughts with others on this brilliant site. Keep your chin up now. xx

  • Thank you glo42. I agree this site is brilliant, it would be a lonely place without it xx

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