carbimazole vs radioactive iodine in toxic nodular goiter

i had a diagnosis of  toxic nodular goiter from 2 years now.i am taking 20 mg carbimazole and my tsh is around 2 for the most of the time after i started taking carbimazole then lately my tsh went above 3 and i felt better and my BP went around normal which made me reduce the dose of antihypertensive drug then i tried to reduce the dose by taking 15 mg and repeated  the test which return to around 2 again so i went back to the 20 mg dose. i wonder if i am doing the right thing or not. i wonder also is it better to take radioactive iodine or continue taking carbimazole 

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  • Hi elsaba,

    I didn't have a goitre but was diagnosed extremely Hyperactive around 25 years ago. I was given Carbimazole for 18 months, I was then told it would be advisable to have RAI. They said eventually my gland would become underactive and that it would be 'easier to treat!'. I believed them, 14 months later I had to have the treatment again. For 20 years I was just given a yearly blood test and told 'You are in range' I was happy with that, because I was pig ignorant and not informed. I was ill during that time and never felt well. 5 years ago after becoming sooooo tired all the time , I was given 25mcg Thyroxine and kept on that for a 5 years until last September this is when I could hardly function and looked to the internet for help. I lost count of the amount of times I visited the GP with various things. I found this forum then ' thankfully', and a lot a things started to fall into place and with the advice found here I started to help myself and ask questions. I'm still only on 50 mcg but am seeing an Endo again and have more better days than before.

    If I did have a time machine I would certainly put a lot more thought into having the RAI. I would ask questions of the outcome of it like 'BIG TIME'. I now endure the effects of Hashimotos ( something else I was never informed of prior to this forum).

    Please get all the info you can others will be helpful on this forum.

    Best Wishes. x

  • thanks alot  for sharing your experience mango_555

  • This is advice from Dr Toft who was President of the BTA and it was in Pulse Online - an online mag for doctors:

    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.

    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.

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