any side affects of radio iodine treatment for Graves

Hi

I am new to the forum. I was diagnosed with Graves disease almost eight years ago and I have been receiving treatment with PTU (two years) then Carbimazole (six years). I am currently slightly under-active and I have come to the point where my consultant has recommended the radio iodine treatment to knock out my thyroid. I had hoped not to get to this point, but I have been told there is a time limit to the medication and potential risk of heart disease, if I continue with medication and the swinging pendulum between over and under-active thyroid.

As such I wondered whether there were any side affects of radio iodine treatment, as I am quite a lean chap and don't particularly want to add weight, I had heard this is a possible side affect.

Could anyone shed light on how long I will need to take off work following treatment and how long before I can spend time with my wife and two dogs.

Thanks

John

6 Replies

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  • JrLittle,

    I had high dose RAI to ablate remnant thyroid cells which meant 4 days hospital quarantine and 21 days restrictions. My vet told me that my then 10 year old dogs weren't likely to live long enough to develop any complications from any radioactivity I gave off. I did try to discourage them from licking me for 3 weeks though. I haven't had adverse effects other than dryer mouth which is quite common and intermittent taste disruption which can mean avoiding some dishes for a few weeks until it sorts itself out.

    My sister had RAI for Graves and because she would have had to travel on crowded public transport for more than an hour in each direction and she worked in an office with women of childbearing age she had home quarantine for 3 weeks. She has thyroid eye disease which has been made worse by RAI.

    The 21 days restrictions include:

    Avoid pregnant women and under 18s.

    Avoid barber and dentist and stay away from pub, restaurants and cinema.

    Avoid travelling on public transport for more than an hour.

    Do not to prepare food for anyone and use one set of crockery and cutlery which you should wash yourself.

    Double flush toilet and mop up any splashes.

    The nuclear physicist told me that in reality you will be giving off roughly the same amount as natural background radiation but the precautions are to avoid unknowns which may become evident in 30 years.

  • Clutter

    Many thanks, very useful info.

    My dogs are only 16 months and 28 months, whippets; who spend much of their time cuddled up to me when sat on the sofa. Hence my slight concern.

    What is thyroid eye problem?

    Thanks

    John

  • JohnrLittle,

    Thyroid eye disease google.co.uk/search?q=Thyro...

  • Just to clarify RAI for Graves doesn't require a stay in hospital John, that only applies to higher doses in thyroid cancer treatment. You will pop to Nuc Meds dept, take a pill then go home straight after. I more or less carried on as normal just avoiding close contact with my children for a couple of weeks, I had no side effects at all apart from fatigue when I went hypo which happened within about 4 weeks. I was put on 12 weeks of steroids to prevent any eye problems. For me it was the best decision I made and I wish I had done it earlier, Graves on and off for 30 odd years was a right pain ! Can I just add that you might get more negative replies than positive, that is the nature of the forum, the many 1000's of people it worked for are out there getting on with life, only the few who didn't have a great outcome will be here. You must do what is right for you and only you can decide, good luck.

  • Bantam many thanks for your reply, very useful. I have a great consultant on the NHS who I have seen every three months for approx six years. So I am confident in his ability and advice.

    Once you went hypo how long approx did it take to come under control and lose the fatigue? Did you put any extra weight on?

    One last query when you had Graves were you treated all that time with carmabrimasole?

    Thanks

    John

  • I had the RAI around 15 years ago so I can't really remember how long it took for the Levo to work but I don't recall feeling too bad at the time. I haven't put any weight on at all, still size 10/12 and around 62kg. I first had Graves when I was early teens, was on Carb for a few years but never controlled well and couldn't stay in remission for more than a few weeks so I had a partial op. After that I was fine, no meds needed, then hit my 40's and Graves returned so back on Carb but again not controlled so I asked for RAI, glad to be shot of Graves ups and downs for good.

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