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  • Anonymous
      Post count: 93172

      The more I read, the more I am convinced that I have the eye
      disease, which saddens and scares me greatly. Of all my problems,
      this one scares me the most. I’ve had these symptoms for one year now.
      The opthamologist said, one year ago, that I had optic nerve pallor.
      Something that he has only seen in patients that are really sick with
      Lupus or other disease like that. I need to find and opthamologist in
      my area that specializes in Graves. I’ll call tomorrow. My lids are
      pretty swollen and feel puffy. What will happen next? Is this
      bulging sudden or gradual? Will I even get the bulging? Thanks
      for any help. Amee

        Post count: 93172

        Hi Amee! My GD Ophthalmopathy started out much like yours – red, gritty, irritated eyes with some protusion in the right eye and double vision when I looked up. No one really can predict what will happen to your eyes in the future. Chances seem to lean toward your eyes calming down after a while on your own. Either way, I definitely recommend seeing an ophthalmologist who has experience and knowledge of GD. Having a baseline history started on your eyes is the smart way to go, so the doc can watch your progress and make appropriate recommendations. Sometimes changes in your eyes go unnoticed in the mirror, but measurements and close-up photos don’t lie.

        Best of luck, Debby

          Post count: 93172

          Amee: Thinking back my red eyes was there before anything else but they
          didn’t start going buggy (protruding) until after I started Synthroid.
          I would say it more irritating to have this problem than painful. I keep
          my head elevated for sleeping which helps with the swelling. Each night
          I put a lubricant in my eyes then tape my eyes shut but evertime I get up
          I must re-tape (weak kidneys)take only sticks once. Can’t use ceiling fans
          and if I am out in the wind I must use the natural tears a lot. It also
          seems as when the eyes bulge more the redness and irritation escalate
          as well. I have a standing appt with my Opthamogist every three months.
          Double vision creates a problem. I sure gets some funny looks when I
          hold one eye closed to sort of prevent the double vision. Margie

            Post count: 93172

            Hi Maryshia! For peace of mind I would see an Opthamologist. It doesn’t
            cost that much more for you eyes to be check by a specialist. I did
            not start my heavy swelling in my eyes until I was put on Synthroid.
            Mine eye problem never went away, only became worse. Is this doctor
            friend an eye doctor? I have been to two Endo doctors and usually
            neither will discuss eyes. Margie

              Post count: 93172

              Sure sounds like the way my eye problems began. I didn’t expect it and
              didn’t recognize it for quite a while. I see an opthamologist
              who specializes in this now and wish I had gone to see one as soon as I
              had any problems to be sure I did anything & everything to combat this.

              So my recommendation is to see the dr.

              Take care and good luck

                Post count: 93172

                Looks like you got lots of responses. I have a hunch we’re all different.
                But it’s good to know if you’re going thru something at least someone
                else probably has too & you can talk to them about it.
                It is the pits. I just figured out the beginning of Oct. what was going
                on with me and I was terrified. Now I know I probably won’t lose my vision.
                I just get to go around sort of funny & tired looking. I try to consciously
                lower my eyelids when I’m around people – I’m sure that works!!!
                I have double vision but I don’t have to tape my eyes or use drops or
                anything. I start my work day at about 6:30 seeing pretty good and have
                to put glases with prisms on about 3:00 or so every day to continue
                It certainly sounds like you do have Graves Eye Disease and you do need
                to go to a dr. and read and ask questions so you at least know you’re
                doing everything you can do and then I don’t think it is quite as scary.
                Good luck to you.

                  Post count: 93172

                  My symptoms just sort of snuck on me. When I first got Graves, my eyes
                  were a little gritty but I didn’t think it was a big deal and everything
                  else was so bad I didn’t even think about that part of it.
                  And then after RAI I thought everything would be better and done.
                  The other eye symptoms just snuck up on me. Even now, my eyes are not
                  terrible compared to what I read here. They feel tight, my eyelids are
                  retracted, my mom (who hasn’t figured out yet what’s going on & I haven’t
                  told her) said I look like I have black eyes. (When I first asked drs.
                  about the bags under my eyes, they said they were bags under my eyes –
                  comes with age. That’s what I told my mom it was then, and I haven’t
                  corrected it.) I have limited eye movement, I know I stare, and I have
                  double vision.

                  The funny thing is, no one (except my mom the one time and, of course,
                  now she doesn’t want to make me feel old) says anything about it to me.
                  I think everyone must be awfully polite.

                  I was real scared at first and I couldn’t talk about it without crying.
                  It still makes me sad and I feel out of control. But I know that doesn’t
                  do any good. I know a couple of people that are dealing with MUCH worse
                  diseases than this is and that keeps me humble. Learning about it took
                  some of the scariness out of it. I think it’s important to find an eye
                  dr right away that you feel comfortable with. If you know you are
                  doing everything you can to take care of this, then you can kind of turn
                  over the rest. I do believe this is something we can come through ok –
                  sort of like going on a roller coaster ride (I don’t do that anymore).

                  And be sure you have someone to talk to. My husband tries real hard and
                  that helps. But I know he doesn’t really know what I’m going thru. I
                  have a friend on line that I know is there to talk to and that helps a

                  You will be fine. It’s just not what you wanted to be doing this year.

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