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  • Anonymous
      Post count: 93172


      I asked the same question prior to my RAI many years ago. I was told at the time the chance of my eyes getting worse was only two percent. I found out later that that was not so. The incidence of TED developing after RAI is thought to be between twenty and eighty percent (depending on the studies you read about) but it is highly debatable who’s test results are the most accurate. Some of the studies could not be duplicated or the studies did not use a control group.

      Sorry to say but you can find just about any study you want to show what you want it to say. If you want to show it has a small percentage then you can quote the twenty percent reports. If you want to show that RAI causes TED they you can quote the eighty percent report.

      We have had a number of our Board of Medical Advisiors address this question. There is even a margin of difference between them. But bottom line is you are looking at a greater percentage of TED in the future if you already have eye involvement and you take RAI. RAI with steroids reduce the likelyhood of future TED problems. There are plenty of studies that prove both results depending on how the testing was done.

      Best bet is to ask your eye doc and the RAI doc to see if you get two different opinions. If you get different answers ask the both of them to get together and try to decide what may be best for you and then you make the decision.

      There are no easy answers I am afraid. We are only a click away.

      On-Line Facilitator

        Post count: 93172

        Hi Leigh,

        Eye problems following RAI seem to vary from person to person (just as does everything with this disease!). I have known of people with eye involvement prior to RAI who saw improvement with their eyes following RAI. I on the other hand had the exact opposite problem. I had absolutely no eye involvement prior to RAI (had an eye exam just several weeks before RAI). Within weeks after receiving RAI I developed severe eye problems. The “temporary” worsening of my eye symptoms/problems lasted 5 years! Possibly the concurrent course of Prednisone is one to SERIOUSLY consider.

        Best wishes,

          Post count: 93172

          Does anyone know how long the eye disease lasts? I received radioactive
          iodine in September of 1997. The thyroid levels are OK, now. But my eyes have gotten progressively worse–incredible tearing, irritation, pressure, bulging. I do have a great ophthalmologist, but short of taking steroids, there’s not much they can do. He told me at the last visit that the eye disorder can cause Glaucoma. I tried a week of steroids and it worked beautifully. However, I don’t want to be on steroids long-term. My ophthalmologist said that this disease can “burn out” after a time–anyone know a range of time? I am very depressed, and am tired of the eye irritation and changes that have taken place. Please help!

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