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  • Anonymous
      Post count: 93172

      Dear Kelly I was wondering if I should be on this as well? Maybe you can help I’m hyper and had the iodine drink and I have graves disease,but I don’t take anything for it and my graves is not in remission yet so how come I don;t take what you do? Could it be my doc just dosn’t know that he should have me on this?THANKS kELLY

        Post count: 93172

        Kay–I’m not Kelly, but I’d like to respond to your query. I am concerned by the way you stated the question: “How long is your doctor WILLING to keep you on PTU?” It is YOUR choice, not his. I took PTU for 15 years, despite much shaking of heads by the medical establishment. They did not refuse to write the prescriptions or order the blood tests. After about 8 years, my need for PTU suddenly dropped to half the original amount, but I never went into remission. It was possible during those 15 years to keep my thyroid production in check, although there were ups and downs to how I felt. My eye symptoms were manageable, not bad.

        About a year and a half ago, I decided take RAI and get on with my life. I thought it would make things more stable. Unfortunately, I didn’t know about this BB then. The endocrinologist did not tell me that RAI could exacerbate my eye disease, nor did she give me any idea that there would be any post-RAI adjustment problems. It has been a rocky 15 months since then. I have just been pronounced “within normal range”, but I sure don’t feel that way. Maybe I will eventually. I’m not really sorry I chose this path, but I wish I had been given more information. It was certainly not a quick, easy solution, although it apparently is for many people.

        This may not seem relevant to you. What I’m trying to say is that even if PTU doesn’t provide a “cure” within 2 years, it’s not such a bad road to take for a somewhat longer time, until you decide what you want to do. Read this board, make an informed decision, do not accept what your doctor is “willing” to do if it is not what you want.

        Sorry to lay so much on you! Elisa

          Post count: 93172

          How long is your doctor willing to keep you on PTU? I’ve been told
          I can be on it for 2 years and that if I do not go into remission by        
          then, I probably will need RAI. Also, I do have TED, 8 months after
          starting PTU.        

            Post count: 93172

            TED is the abbreviation for Thyroid Eye Disease. Like Graves’ Disease
            it is an autoimmune disease. There is some information on the web
            perhaps someone reading this can give Kelly a few sites as I do not have
            that info handy. 8 months after I was diagnose with Graves I developed        
            TED- however this does not mean you will get this disease. Some people        
            develop TED before they become hyperthyroid, some develop both diseases        
            at the same time, some only get TED and never become hyperthyroid, and
            some develop TED like I did. It would be a good idea to watch for any
            changes in your eyes, like moving your eyes up (is it painful) or a        
            change in your vision or if you notice your eyelids retracting. See your
            ophthalmologist if there are any changes. TED is treatable. The first
            eye doctor I saw said there was nothing I could do – NOT TRUE.

              Post count: 93172

              I too am having adjustment problems after RAI. This situation is exacerbated by the fact that the local doctor keeps changing. RAI was offered as a ‘permanent cure’. There was no suggestion that I would not be well on thyroxine supplements. My problem is that when I feel normal on the supplements the T4 is too high and TSH is out of range. I sure wish I had been warned that this was a possibility. What happens if I can’t function in the ‘normal’ range?

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