Graves and RAI

Hi diagnosed three years ago with Graves' disease. Have been on Carbimazole on and off for the three years different doses to try and bring me into remission. Saw consultant today he said my levels are not stabilising. Asked me would I consider RAI.

Am not keen as when on block and replace levothyroxine did not agree with me. I am right in thinking that if I had RAI I would go hypo and therefore would have to take levothyroxine. Anyone would like to share their experience of RAI.

Alison

3 Replies

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  • Ali,

    Radioactive iodine is contained in a small capsule which is swallowed with water. I had high dose RAI for thyCa and was quarantined at the hospital for 4 days. Little sis had RAI for Graves and was allowed home but had restrictive precautions to adhere to for 3 weeks.

    RAI will make you hypo within a couple of months and Levothyroxine (T4) is the replacement hormone you will be prescribed although there is an alternative ie Liothyronine (T3). I was ill on T4 only but am well on T4+T3 combination. I would certainly discuss your post RAI treatment options before agreeing to it.

    RAI can be contraindicated if you have thyroid eye disease (TED) and can make TED worse. Surgical thyroidectomy may be better than RAI ablatement.

  • My husband who had Graves was told NEVER NEVER give RAI to anyone under 40

    I would say NEVER NEVER give RAI to Graves patients period

    I do not even agree with surgery have had to fight immense battles to get my husband well again after far too many years undiagnosed /untreated /incorrectly treated and now fighting same battle for daughter and granddaughters

  • Before having RAI I would certainly try going 100% gluten free and see if your thyroid antibodies calm down after being on the diet awhile.

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