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  • Anonymous
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      Hi Jocelyn,
      Just read your post. My experience is that I was diagnosed with hyperthyroidism in 1985 (although it should have been diagnosed years earlier).
      At that time I did not want to go the RAI route and went to a doctor who was in agreement with treating me with Tapxxxxx and Proprxxxxx. (We are not supposed to use brand names here). I was on these medications for about two years and had remission until 1994.

      In 1987 I had right lid retraction. There was no diplopia or periorbital swelling. A CT scan of the orbit was normal. I had a right mullerectomy of the upper lid in January ’89 because the one eye was protruding.

      When I went hyper again in ’94 the original specialist I had been seeing had retired. The new Endo I went to suggested RAI telling me that as I got older symptoms would get worse even if I went on “T” again. I was 51 at this time. I went with the RAI. (I have since changed Endos and MIGHT reconsider if I had the choice again). My T4 has remained at the upper end of normal since 1994. I have never been on any replacement therapy.

      In ’96 I showed a prominence of the left eye and was scheduled for a mullerectomy. I then had a scare with breast cancer and went through a couple of months not knowing what the outcome would be. I had two biopsies before it was found that the mass they found was benign. However, during that period I was a wreck, testing and waiting and my body went through extreme stress. I think this extreme stress is what caused my eye disease to become worse.

      But Jocelyn for me I am happy with the decision I made in 85 to go on medication rather than RAI. It gave me nine years in remission during which time we did a lot of travelling and had good times. I know each persons body reacts differently but for me I would rather have had that time that I felt so good in my 40’s. I know I have had a rough time in the last few years but I have a lot of good experiences to look back on during my remission period. At the moment I am on disability from work and that would have upset me much more ten years ago than it does now. This is a decision everyone has to make for themselves. I did not have the benefit of this BB or internet information when I was diagnosed. I still feel though that a Doctor who really understands Graves disease and all that comes with it and that you are comfortable with and you can discuss the pros and cons with is the most important thing.

      Sorry this is so long, Good luck, SAS

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