How long do you give Carbimazole before deciding on radioactive iodine?

Is there anyone out there who has been successfully treated with carbimazole? If so, how long did it take? I have been on carbimazole for 2 years. Initially started treatment at 40mg and dosed gradually down to 5 mg alternate days. My last bloods showed that my hormones had gone in the wrong direction (T3 and T4 up and TSH suppressed), so back up to 5mg per day. My consultant suggested radioactive iodine treatment. I am keen to pursue with carbimazole. Has anyone be cured with carbimazole after 2 years? Is radioactive iodine inevitable?

Any experiences on the matter here would be very welcome.

Kerry

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  • Radioactive ablation is not inevitable, but it makes life easier. - for the doctors - not always for you.

    Some people take carbimazole for a while, come off it and are fine, others can manage their hyperthyroidism using carbimazole long term. Some people have iodine ablation and are fine on replacement meds, others bitterly regret the choice.

    Assuming you have Graves disease which is causing the hyperthyroidism... Getting rid of the thyroid will help get rid of one set of symtoms but will not get rid of the disease. Afraid you are stuck with that and all you can do us manage the symptoms and hope for remission.

    On the other hand, if your hyperthyroudism is caused by a hashimotos blip then its a different story.

    Have you had your antibodies tested? What were the results?

    Xx g

  • Thank you galatians. I have graves. I had my antibodies tested initially, but not since then. I wasn't told the actual level, but my consultant made reference to my antibodies level being high, so expected me to be on carbimazole for at least 18 months. It was a shock this week being asked to consider raI treatment. Part of me thinks he probably knows best, so carbimazole is now unlikely to resolve the situation. But I am very reticent about raI as I think my response to carbimazole has been good apart from my recent set back. I feel fine on the carbimazole .

  • If you have any problems with your eyes that might point to TED dont have RAI, as it will possibly make it worse.

    I have Graves. I was treated for 18 months with Block and Replace on which I never felt well. Off all medication for a month and started going hyper again.

    Endo was pushing for RAI (at that point I lost faith as I had TED and she never mentioned it may get worse) or surgery (I have right sided heart failure so didnt really want to risk surgery)

    So, I asked if I could titrate Carbimazole and went into remission about 20 months ago. I was on Carbimazole for about 3 years all in all (inc the B&R)

    I have read that if you are going to have problems with antithyroid drugs it will be in the first 3 months.

    Sadly, there is no cure for Graves but you can look forward to remission. Tell your Endo you would like to stay on Carb a while longer, see what happens.

  • silver_fairy thank you for that. It was reassuring to hear that carbimazole helped to settle your graves.

  • Hi, I have Graves, I was diagnosed in March 2012 (T4 > 100!). I took Carbimazole for exactly one year and then stopped. I've been in remission ever since :-)

    I think if I got sick again, I'd opt again for Carbimazole and see if it would lead to another period of remission.

    All the best!

  • on no account condider RAI

    they fail to warn you that it can trigger thyroid eye disease

    thry fail to tell you that as per Tayside report all RAI patients become hypothyroid in 5 yrs most itonly takes weeks

    they fail yo tell you that life on levothyroxine (little white pill ) is only half a life

    if theres no other option choose surgury but be very very sure you have an endo who knows that NDT is a far better option than levo after Graves and that he must never ever rely on blood tests but always treat on symptoms

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