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  • Plantasia
      Post count: 2

      I’ve been suffering from Graves Disease for just over a year, and was diagnosed in February. I haven’t taken enough photos of myself since I got sick (blame the weight gain and acne that comes with GD!) but I believe I started having eye symptoms in August.

      Here is what my eyes look like right now:

      Basically my two symptoms are:
      + Lid retraction
      + Swollen upper lid/eyebrow area.

      My eyes aren’t painful, and they aren’t dry either. Is this a ‘mild’ case of eye disease? And I know it’s individual, but do I have a good chance that my eyes will go back to normal after the active period?

      I’m really scared, and embarrassed of how I look. I’m sure you all understand.

      Thank you for your time.

      Online Facilitator
        Post count: 4290

        Hello and welcome – it is very common for Graves’ patients to have *some* eye involvement, and a small number will progress to needing surgical or other interventions.

        In most cases, there is an active phase for the eye disease and then some improvement – although not 100%

        You might consider asking for a referral to an ophthalmologist who is familiar with Graves’ or checking out to find a doctor near you, just to get a baseline done.

        Avoiding smoking (and exposure to second-hand smoke) is critical right now, as smoking increases the risk. Also, if you are contemplating RAI, it’s important to be aware that this can increase the risk of worsening eye issues. (A course of steroid therapy can reduce this risk to near zero – but, of course, the pros and cons of that option need to be considered seriously). Finally, be sure to stay on top of your lab work as recommended by your doctor, as being either hyper or hypo can increase the risk of worsening thyroid eye disease.

        Research out of Shiley Eye Institute at UC San Diego found that the appearance changes are even more challenging for patients than having specific vision issues like double vision. Hopefully, you have a good support system at home – and either way, this community is always a great spot for support and encouragement.

          Post count: 305

          Kimberly is right. You should see an ophthalmologist, preferably an oculoplastic surgeon. It is important to get measurements to see how your eyes are changing as well as to look out for any optic nerve changes, which can be subtle at first. Specifically look for color vision changes, particularly to the color red. I am surprised your eyes are not dry, given the retraction you have. At any rate, you do need to be evaluated. Hopefully your eye involvement will be limited to lid changes. I cannot tell from the photo if your eyes are actually bulging or the retracted lids just make it look that way. Another reason to get measurements of the degree if any of proptosis. I had severe eye involvement and I understand your fears.

            Post count: 1909

            Hi, I agree with Kimberly and Liz. Very important to watch and note symptoms, critical to go to a physician who understands TED. An oculoplastic facial surgeon is the best choice.

              Post count: 2

              Kimberly, Liz1967 and snelsen — thank you very much for your replies and advice! I’m going to go into my doctor tomorrow and get a referral to an ophthalmologist with experience in oculoplastic surgery. I did some research and found one in my city that specializes in GD.

              Can eyes in the inflammation phase improve or worsen week to week? I’ve noticed less swelling around my eyes since I’ve been sleeping better for the past week– here are some pictures I took today that hopefully are a bit clearer than the last one.

              Lying down (you can see the lid retraction a bit more):

              Thank you again. I’m looking forward to the point when I feel a lot more confident about this disease and I can help newcomers here.

                Post count: 305

                Yes, you can note changes week to week. Sometimes sleeping with your head elevated, either with pillows or blocks under the bedframe at the head of the bed, will help the lid swelling. This allows some of the fluid in the lids to drain a little bit.

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