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  • Anonymous
      Post count: 93172

      I have news that could be helpful.
      I’ve been aware of eye problems since August tho I now recognize muscle
      inflamation and restricted eye movement started earlier. Tearing,
      itching, protruding, staring, lid retraction, puffiness, etc….
      Double vision to the point of wearing prisms since Nov.

      My prisms were measured at 5 strength (split 2.5 between each eye).
      I thought my double vision was getting better because prisms have
      been bugging me lately.

      Yesterday went to dr. to see if he could test a difference. I tested
      at needing 2 strength – a major difference. And this was at 5:00
      in the afternoon after a full day of working. I hope it holds!!! Any
      way, I think that is hopeful news.
      Hang in there,

        Post count: 93172

        Dear SAS,

        I remember some posts or chats with Bruce talking about this
        eye stuff “burning it self out”. I am not sure I know what was meant by that but the language
        stuck with me and I was encouraged.
        I got this image of this disease just giving up…ending…being done in
        and then the person was still there….still here…through it all…
        Hang in there. And I am sure Bruce will be around to talk to you.
        (There is a saying that artists and authors get credit for whatever
        their audiance sees whether or not it was of conscious creation. so whatever refernce I am remembering, Bruce, just take credit.)

        SAS, I am ususally reminded that life is one day at a time territory,one way or the other,
        GD sure spells that messsage with some authority. One of the aspects of GD that I find most difficult
        is the “unknown” progression of it. Reading your posts, I was so reminded of that…and my heart goes out to you…how long indeed?
        Then it feels like moment to territory. So just in this moment I am going to stop typping ang take a really big breath
        and ……………………………………I hope you will too.
        Talk to you again. Jeannette

          Post count: 93172

          I don’t know “how long”, but I can say my eyes have definitely gotten
          less protruded in the last 3 months or so. They were about 3mm and
          last time they were measured by the endo they were about 2mm. I am
          about 15 months out from when they first started bulging, about 8mo.
          from the 2nd RAI, and about 9mo. on Prednisone. Last week the endo
          called me and said he thought I should try tapering off the prednisone
          again. I went from 20mg to 15mg. We’ll see. I tried tapering off
          twice last fall, but had flare-ups. I am now having a lot more good
          days than bad days, which was not the case a few months ago. People
          at work say my eyes look better. I am working about 55 hours a week
          because of a deadline. A lot of pressure, due to a trade show for which
          I’m R&D product teamleader. I’m sure its gone slower because of my
          sub-optimal performance for the last year or two. My fellow employees
          have been real understanding about my problems. I just wish I didn’t
          have to work so much with computer screens and un-natural lighting.
          Oh well, I’m rambeling on.
          I think most people’s eyes do get better without the treatments. I am
          going to give it a few more months. I think I’ll ask my endo for the
          reference to the GD experienced opthomologist he has spoken of, on my
          next visit.
          I’ll keep you posted on my eye progress, SAS.

            Post count: 93172

            Hi SAS! I posted this message months ago, but it bears repeating. The progression of
            the eye involvement in Graves’ Ophthalmopathy varies from person to person.
            According to what I’ve read, eye symptoms and hyperthyroidism symptoms usually appear
            within 18 months of each other. The natural course of eye changes in the soft tissue,
            eyelids, and orbits occur within a six month to one year period. My doctors told me
            that most GD eye symptoms happen within the first two years.

            It seems that the eyes go through a “hot phase” and a “cold phase.” During
            the “hot phase” there is an immune attack on the eye muscle tissue, which
            causes the inflammation. In some people this inflammation is slight and it
            goes away on its own. In more rare cases, others see the inflammation get
            progressively worse and have to decide on treatment. Steroids are usually
            used first, then radiotherapy or decompression is recommended for severe
            cases after the inflammatory phase has subsided. Six months of stabilized
            eye changes along with stabilized thyroid levels are indicators that you are
            in the inactive or “cold” phase. At this point residual changes of increased
            tissue and scarring can remain, and you may be faced with other treatment
            options – eyeglass prisms or strabismus surgery, or eyelid retraction.

            Most of this info I summarized (accurately, I hope) from a very informative
            bulletin from the NGDF, #6 “Eye Changes With Graves’ Disease – Continuing
            Concepts.” I recommend joining the foundation and ordering this bulletin and
            others! Go to the NGDF home page found at the top of the BB site and print
            out the application.

            I hope this was helpful. Debby

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