RAI v Surgery

Hi everyone,

I'm looking for your help and guidance if you can take a minute or two to respond with your views. I have had Graves disease for 3 and a half years now and unfortunately I am not one of the lucky ones who will go into remission, as each time we lower the dosage of neomercazole my levels go sky high again. I am currently holding stable on 10mg per day (taken as 5mg twice a day) therefore I am being pushed by my endo to get RAI treatment. I have reservations about undergoing RAI and would be more leaning towards surgery. My reservations are as follows: My husbands uncle was treated with RAI 20 years ago and 10 years ago he suffered throat cancer for which he underwent treatment and made a full recovery. 12 months ago he was diagnosed with cancer again, this time in the groin and his oncologist has said to him that the type of cancer he has stems from the RAI treatment he received. He is currently fighting for his life :(

Other reservations are that I have 2 children (11 & 12 years old) for whom I am the primary carer. My son is autistic and my daughter suffers with anxiety. I feel the restrictions to proximity that are imposed following RAI treatment will be problematic and I do not want to put them at any unnecessary risk. I am not fortunate enough to have extended family around me that could take over their day to day care so this to me is a big problem.

My mother also asked her doctor in France his opinion, (he is not a specialist and did not have my full medical history in front of him) and he said for someone of my age (I am 44) he would recommend surgery. They would normally only recommend RAI for older patients.

I know there are risks with surgery too but I still think this is the better option for me. Am I mad?

I am due to go and see my endo tomorrow and plan to discuss my options further but would really appreciate any feedback from you, especially if you have good or bad experiences of either procedure.

3 Replies

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  • Samru,

    As RAI will involve quarantining yourself from your children for up to 21 days including avoiding preparing meals for them you may be better off opting for thyroidectomy.

  • I've never been hyper, but if I were I would opt for surgery in preference to RAI.

    RAI is not a precise science. They might give you too little and you would have to repeat. I've read about some people having to take three doses. Goodness knows what that does for their future risk of getting cancers of all kinds.

    On the other hand you might be given too large a dose and your thyroid would be killed stone dead.

    My understanding is that doctors usually assume RAI always works well and they would quickly stop doing regular blood testing, so you could end up extremely hypo before they treated you. Doctors don't think hypothyroidism is a big deal so you could end up suffering for ages.

    However, if you were given surgery and your whole thyroid gland was removed it has some advantages after the event. You won't have to worry about cancer, you can be with your children again very quickly, and no doctor can ever argue about whether or not you need thyroid treatment.

    In either case you may have problems getting enough treatment, but then many people who are hypothyroid do.

  • As an aside (and not to scare you) has your daughter been tested for Graves as anxiety is one of the main symptoms?

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