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  • Anonymous
      Post count: 93172

      I was diagnosed with Graves in July ’86 (It is now obvious that I had had this disease for a long time but the many symptoms were always blamed on something else. My scan showed I was extremely hyper and the first thyroid specialist I saw wanted me to go the RAI route immediately. I had never heard of RAI, was not comfortable with it and asked to be referred to another specialist. I decided on treatment with medication. In Canada the medication that is normally used is “T”. In two years my levels were back to normal. During this time my right eye was protruding and I had a Mullerectomy (eyelid surgery) in January ’89. From 1988 to June ’95 I was in remission I had no problems and forgot I had ever had this Graves disease.

      In June ’95 I had reactivation of Graves hyperthyroidism. While on vacation in Mexico I had terrible heart palpitations and on the return trip my legs swelled up terribly (I have flown a lot and never experienced this before). My previous Doctor had retired and the new Endo I saw recommended RAI. This new Endo said that as I was now in my early 50’s that the side effects from medication would increase and more or less indicated RAI would definitely be the way to go. I didn’t have all the information I have gained through this BB then and decided to go with the RAI. Everything went fine. I went to work the day I had the treatment and was back at work the next day. I was told to stay away from small children that night and that was all. My levels returned to normal quite quickly and I didn’t go hypo. I did have symptoms of feeling extra hot and tired but because my levels were in the “normal” range my Endo was not concerned. Actually I didn’t care for this Endo and discontinued going to her.

      In July ’96 my GP (family doctor) noticed my left eye was more prominent than it had been and sent me back to the Thyroid Orbitopathy Clinic. On examination they found some lid retraction on the left side and a left Mullerectomy was scheduled for Nov ’96. In the meantime I was under a lot of stress due to a breast cancer scare and my eye symptoms became worse and the tearing, swelling and focusing problems began.

      I now see an Endo associated with the Orbitopathy Clinic who I really like and is the new medical advisor to the Thyroid Foundation of Canada so I feel confident with him. My levels are still in the high “normal” range and I am on no medication.

      I am glad for my decisions. The long remission period I had before I had RAI enabled us to take many trips to Europe where I enjoyed lots of energy and felt fine. We also went to Costa Rica and I survived the humidity!! Of course I didn’t know that a year after RAI I would get Graves Eye Disease and have to go on disability. For me I feel it is easier to face this being at home, double vision and all these surgeries in my 50’s than it would have been in my 40’s. BUT THEN, everyone is different. Everybody does NOT go into a long remission and everybody does NOT get the eye disease. I think the most important thing is to be up to date an all information and procedures about Graves disease, have good communication with all your doctors and go the route that you yourself are comfortable with.

      Good luck and much happiness to all of you out there whatever stage of this mystifying disease you are at.

      Anonymous
        Post count: 93172

        Hi all,

        Well after my @##$@ endo experience I am getting a second opinion. Monday I’m scheduled with an honest to God Thyroid Specialist (straight from the American Thyroid Assoc.’s site). I’m really uncertain as to why I’m doing the tapazole instead of the RAI so that’s my no. 1 quesiton. Any other good thoughts to bring up? My internist warned me that there are some “odd thoughts regarding the thyroid these days” and to be very careful.

        So, my quesiton for the board is, How does a doctor become a Thyroid Specialist? What qualifications should we (GD patients) be looking for in a doc? Thanks all – wish me luck.

        mel

        Anonymous
          Post count: 93172

          We will anxiously await reading what you learn from the thyroid specialist. Apparently you feel as I that there are so many conflicting medical opinions that I don’t know what to believe.

          I truly like and trust my endo and I too am on Tapazole no RAI. I also have TED and he believes RAI has a negative impact on the TED. Even on this board you read so many different treatments that others are given that differ from what I am getting. I have seen improvement with the Tapazole but I have been on it for 18 months.

          Please keep us posted.

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