R.A.I to have it done or not

saw my endo 3 wks ago and after her telling me i am now the top end of scale but controlled with 20mg of carbimazole a day i feel great for the first time in 2 yrs i asked to stay as i am but she unsisted i have rai after reading so many posts of people suffering so long after having it done trying to get meds right i told her didnt want it but she still insists got my appointment through for christies need a bit of advise as to what to do do i have it or not ?

9 Replies

  • This is from Dr Toft who was President of the British Thyroid Association. It's from an article in Pulse Online:-

    5 .Patients with hyperthyroidism often ask for advice on drug treatment versus radioiodine therapy. Can you summarise the pros and cons of each?

    The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.4

    Iodine-131 will almost certainly cause hypothyroidism, usually within the first year of treatment, as will surgery, given the move towards total rather than subtotal thyroidectomy.

    There is no consensus among endocrinologists about the correct dose of thyroid hormone replacement so patients may prefer to opt for long-term treatment with carbimazole. Standard practice is that carbimazole is given for 18 months in those destined to have just one episode of hyperthyroidism lasting a few months.

    But there’s no reason why carbimazole shouldn’t be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the first course.

    Iodine-131 treatment for toxic multinodular goitre is the most appropriate choice as hypothyroidism is uncommon. Surgery would be reserved for those with very large goitres and mediastinal compression.

    Once hyperthyroidism has developed in a patient with a multinodular goitre, it will not remit and any antithyroid therapy would have to be lifelong.

  • If you can take Carbimazole without debilitating side effects and you're happy as you are, I'd stay on it. Should problems occur down the line you can always revisit your decision. Here's a link to Patient Choice site: patient.co.uk/health/hypert... which has this to say about treating hyperthyroidism:

    "Carbimazole is usually taken for 12-18 months at first. After this, in about half of cases, the condition will have settled down and the carbimazole can be stopped. If the condition flares up again some time in the future, a further course may be needed. However, in these cases an alternative treatment (for example, radioactive iodine) is often recommended. In about half of cases, carbimazole needs to be continued long-term to control symptoms. A different treatment may then be a better option if you do not want to take carbimazole long-term.

    So long-term Carbimazole use is not frowned upon per se. It would be interesting to know why your doc is so agin it.

  • Boltbag,

    Your endo cannot insist that you have RAI and you can refuse it. Have you ever stopped Carbimazole to see whether you are in remission? If you have, and it didn't work, there is no reason why you cannot stay on Carbimazole.

  • I have stopped carbimozole for 2 week and nothing what so ever happened I really really do not want to end up hypo I feel so sorry for all the people on the forum who are still suffering from symptoms yrs after having it done . I met a luvly heart specialist in Turkey who told me he has more hypo patients than hyper patients suffering heart problems because of weight probs I don't want to be1of them ty for your help.

  • Re your comment about the Heart Specialist in Turkey who has confirmed what many other holistic doctors believe that hypothyroid patients can develop heart disease. Most probably because their doses have been too low and also levo is not the best for many people.

  • I am so with you on this...

  • Be firm and delay things - cancel appointments if necessary (you don't have to give a reason and it will take them months or years to notice and catch up with you). It's your body!

  • I have Graves and have refused both RAI and surgery. I am at present on 2.5mg Carbimazole every other day. I feel better now than I have felt since being diagnosed three years ago.

    Your Endo should have suggested you come off the Carbimazole to see if you go into remission. Maybe you could suggest dropping down to 10mg for a month then 5mg for another month and see how you go? I think two weeks is probably not long enough to see if you are in remission.

  • she has left me on 20mg because graves antibodies are very high and she says i will undoubtably relapseif i take a lower dose but i am very happy on 20mg no side effects what so ever


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