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  • SoonerMom87
      Post count: 2

      Hi All,

      I was diagnosed with Graves and GED late 1/17. I have responded well to MMI, and the endo recently reduced my dose after my last labs showed my FT4 was at the very low end of normal (.8). I am now on 2.5 mg/1.25 mg, alternating days. I have not had my labs rerun yet so I don’t know if my FT4 is up. I have labs next week.

      My biggest issue is lid retraction in one eye. I have a little proptosis, but at my last visit with the eye dr (oculoplastic surgeon specializing in GED), he said he didn’t think it was severe enough to do decompression surgery. I have noticed my eye has improved a lot since my initial diagnosis. Some retraction is hanging around and I hate it. Aside from the annoying dry eye it causes, I am very self-conscious about it. I’m interested in others’ experiences in the progression of GED. How long before you felt it was stable? The eye dr. said in a non-smoker like myself, GED typically runs its course in 6-8 months. How do they know it has run it’s course? (I forgot to ask that at my last visit.) Is the retraction I have here to stay or is there a chance it will continue to improve? I’m afraid of GED affecting my other eye at some point, as well.

      I’d also like to hear about experience with eye lid surgery. The dr. said he could lower my lid to a more natural position so the affected eye isn’t as noticeable. He said it is up to me as it’s not necessary for the health of my eye because the retraction is minor (though he acknowledged that he is not the one living with it). I have found a couple of stories online where people say the procedure itself was an awful experience since it’s done with local anesthetic. How bad is it? Can anyone share their experience? Thanks so much.

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        Post count: 4290

        Hello and welcome – I do have lid retraction (originally diagnosed in 2017), but not severe enough to require surgery.

        Hopefully, others who have had this surgery done will chime in with their experiences.

        Usually, doctors like to see that your eyes have stabilized (no changes for 6 months or so) before doing surgery. Some patients will see an improvement in eye issues as levels stabilize.

        Also, hopefully, you have an ophthalmologist who is very familiar with Graves’ disease and who can give you an assessment of whether you might need orbital decompression (which if you do, that surgery is done first).

          Post count: 305

          I have had three eyelid surgeries in order to adequately correct eyelid issues, all from a Graves oculoplastic specialist. These were after bilateral decompressions and strabismus surgery. Eight months is optimistic for thyroid eye burnout. I am a nonsmoker and it took about eight months after TT to stabilize., then six months of stability before first surgery. With thyroidectomy, it can burn out more rapidly, like within a year. Otherwise, 18 months to 3 years seems to be time to burnout. Lids are not painful to do, but they are difficult. The lid muscles are thin and can only be redone a limited number of times. Even after TT, when your hormone levels are dependent on your dose of levothyroxine, not your diseased and erratic thyroid, lids can vary for awhile. As Kimberly said, 6 months of no lid changes would be a minimum as well as normal thyroid values for those months. If your TSH has not returned to normal, I would be even more hesitant. Also, be aware that any facial or eye surgery can rarely activate or reactivate the eye disease so err on the side of caution if you can do okay without it. Lastly, choose a n oculoplastic surgeon experienced with Graves. Eyelids are delicate and difficult.

            Post count: 2

            Thanks to both of you for your replies. My endo referred me to my eye dr. He is an oculoplastic surgeon who specializes in treating GED. I would get a second opinion before moving on to surgery, though.

            My TSH is normal and has been since April. My FT4 has been within range (now bordering on low) since February. I still feel like my eye is not stable, though, even though it has been nine months since it first started bothering me. (I had problems with it for three months before my Graves/GED diagnosis.) It is SO much better than it was in January, but I still have days when I feel it is worse than the days before. And some days it just looks worse and is more noticeable. Other days, I forget I have GED. I certainly don’t feel like it has been stable for six months. It’s very frustrating. I see my eye dr. again next week. I’ll be anxious to hear what he has to say. Thanks again.

              Post count: 305

              If the eye disease teaches you anything, it is patience! So very frustrating and it seems all you do is wait. I feel your pain but eventually you do get to the other side. Hang in there. You are doing the smart thing by considering your options and getting a second opinion if needed.

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