Thyroid UK
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Anyone had radioactive iodine ?

Hi All, I've recently seen private endo consultant. I was hoping to come off carbimazole as I believe 50% of people can do without it about 2-3 years as sometimes the thyroid corrects itself. I'm only on 5mg daily. Unfortunately recent blood tests show by thyroid is now overactive so been requested to double dose to 10mg. daily. Endo said to forget doing a trial without it ! He's recommending radio iodine treatment. Any one here had it ? Any issues with having this treatment ? I've also got other auto immune problems - lupus, Sjogrens, coeliac. All help gratefully received. Thanks

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Hi

I had iodine treatment seven years ago and soon became under active which meant I had to go on levothyroxine but I was one of the few people who cannot take this medication probably because I am a HIGHLY SENSITIVE Coeliac. So do check up on your other health issues before making the decision as it cannot be reversed. The actual procedure is quite simple but you will be radioactive for a few weeks after so closeness to children and animals has to be taken into account. Good luck with it anyway

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I've been told I'd need to go on levothyroxine immediately after the radioactive treatment, I'm a highly sensitive coeliac too !! Many thanks for your reply.

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Who told you that ? It takes a while for the rai to do it's job and there's no way of knowing the result until at least 4-6 weeks, even then the full effect may take a few months and it takes time for levels to stabilise. RAI doesn't always work so you don't want to be taking Levo if you don't need it.

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The endo !! He said the treatment would destroy the thyroid and I would need to start medication immediately and be monitored for 12 months !! I've been so poorly for the last 3 years with other auto immune diseases and I just cannot face another battle trying to get right - if I ever will !! Thanks for the info

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I think you need to be sure this Endo knows about RAI ! It takes at least 4 weeks for it to work so personally I would be questioning his treatment methods.

btf-thyroid.org/information...

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Thanks for the link I'll check it out. He is the top endo at the hospital ! I'm on carbimazole for over active thyroid, but I think this medication is giving me more problems, I'm so wiped out all the time, muscle ache, headaches, tests keep saying my thyroid result are normal until the last check when I was over active. I prefer overactive - I've got lots more energy !! The good thing though I haven't got to make a decision immediately !!

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"Top Endo at the hospital" don't assume he knows what he's on about because he's chief bod ! the majority don't because they are diabetes specialists. I've seen some scarily bad "top endos" in my long history of thyroid disease.

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This is my 2nd one - last one was so arrogant and continued texting throughout the consultation, said he was sorting out his nights entertainment !!

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