[tc75]

#1058672

Hi! I was diagnosed with GD in 2004. RAI in 2005, decompression surgery, strasbismus surgery and eye lid lowering surgery all within the years of 2009 and 2010. This disease has been a huge deal in my life. Right from the get go..especially the years I was misdiagnosed with allergies and anxiety/panic disorder. I am freaking out now because my eyes are suddenly changing again. I have been stable with thyroid for 4 or 5 years, and my last blood work was only 4 months ago, and normal. So here is my story, and I am really really desperate for anyone with any similar experiences or any knowledge to please share with me. I have been into the emerg eye clinic in my city, plus been seen by my optometrist. Neither with thyroid eye disease experience, or any definate answers. I dont see my opthalmologist for another two weeks. I couldnt get an appt earlier. I am a mom of two incredibly busy little men… 3 and 4 yrs old, and the past week has been hell trying to keep up with them. Not only can I visiably see that my left eye has protruded markedly, but the pain I feel behind both eyes is tremendous. The only relief is to not move them at all, which requires closing them, which as a mom with toddlers is almost impossible to do.
Both times I was seen by the other ‘eye guys’ things seemed fine, and neither could explain the proptosis or pain. It was suggested that there could be scar tissue from the surgeries (but in both eyes?) or that the eye disease is active again.. I understood that there wasnt much chance of a relapse. I thought there was a ‘hot phase’ and that it ended…but can it return???
Anyone with anything they can share with me would be sooooo amazing.

[Bobbi]

#1169289

At one point in time when I was panicked, like you, I was told that yes, the hot phase could return. It’s not what I wanted (or what you want) to hear. I’m not sure how accurate that info is, so I would recommend that you wait until you get to an opthamologist who is knowledgeable. In the meantime, try to take deep breaths and relax. It turned out that I had another issue, which was easily corrected. Perhaps the same will be the case with you. I do hope so. But while you’re waiting for the doctor’s appointment, try not to fret, or imagine the worst. Also, perhaps cold compresses, or some other coping mechanism would help to alleviate the discomfort.

[tc75]

#1169290

Hi Bobbi,
Was it in only one eye you noticed a change or both?
My issue is that it is only in my left eye that the pain and proptosis is happening. I would have figured if it was a relapse of TED that both eyes would be equally affected. Way back when I had all my issues with TED before the surgeries, it was always both eyes.
I do have some pain in the right eye, but only when I move my eye in a certain direction. Otherwise, this eye is completely unchanged.

[snelsen]

#1169291

hi, I second the cold compresses. I have severe TED. but one eye was way more affected than the other. So, from my experience, they can be very different. I have to go now, but wanted to wish you the best of the best when you have your eye appt.
shirley

[Author]

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