Viewing 8 posts - 1 through 8 (of 8 total)
  • Author
    Posts
  • Anonymous
      Post count: 93172

      As far as I have been told TED and Graves run totally separate courses. I had RAI six years ago and had TED at the time. It went away, but here I am with TED again…started a year ago when I went hyper.
      So…would be nice to think that surgery or RAI got rid of TED, but thats not been my experience.

      Anonymous
        Post count: 93172

        Is this true?

        I thought TED was an autoimmune deficiency, separate from your thyroid?

        Anonymous
          Post count: 93172

          Boy I wish that was true. But, unfortunately it’s not. I found, though, that by removing my thyroid, I don’t have to worry about going hyper again and causing a flare up of the TED. I still have TED though but it seems to be more manageable and doesn’t seem to be worsening.

          Diane

          Anonymous
            Post count: 93172

            I’ve been told (recently too) that TED and Graves run separate courses and you can have one without the other. The TED is more difficult to treat and the reasons are unclear why it is even happening. My endo told me last week that RAI can make TED worse so they don’t like to do RAI when the eyes are “hot”. I dont’ think surgery helps much either. It’s a big concern of mine too.

            Adi

            Anonymous
              Post count: 93172

              I didn’t mean to give the impression that having your thyroid removed will prevent TED. What I’ve been told by my endo is that since my TED is flaring up (double vision, blurred vision) that having my thyroid removed is the best course of action. While TED and Graves do run indepent courses (the antibodies that set the thyroid into overdrive are what attack the eye muscles and cause them to thicken thus the “bug eyed” appearance) and the TED will not get better there seems to be less of a chance of the TED getting any worse once the thyroid is removed vs RAI. Again this is not a relationship that is understood by medicine. With my vision as bad as it is I am willing opt for what seems to offer the most hope. I guess what I was looking for was some feedback from people who had TED’s and had their thyroid removed.

              Anonymous
                Post count: 93172

                my endo told me that graves is an autoimmune disorder in which your immune system attacks your thyroid, your eyes and the skin on your legs and feet, as if they were transplanted organs going into remission. if this is the case, how could having your thyroid removed stop the graves from attacking your eyes?

                Jennifer

                Anonymous
                  Post count: 93172

                  I’m sorry…I didn’t mean remission…I meant rejection!
                  Jennifer

                  Anonymous
                    Post count: 93172

                    Hi Jennifer,
                    My endo pretty much gave me the same story except….as long as your thyroid is in your body and continues to function, your immune system will continue to try to kill it thereby, creating more and more antibodies to run rampant throughout your body.

                    Take Care,

                    Pam

                  Viewing 8 posts - 1 through 8 (of 8 total)
                  • You must be logged in to reply to this topic.