Graves & TED All At Once

Last updated: November 2022

About 5 years ago, my daughter, a friend and I were kidding around and laughing when the friend asked that question, "What's wrong with your eye?". One eye was twisted sideways and looked strange. From there it got worse.

How it started

Eyes started burning, itching and moving around in the sockets. My personality changed for the worse, due to Graves' Disease and my husband commented on my behavior and the "dirty looks" I was giving him. They weren't dirty looks. I had no control over my eyes. Then I couldn't stand bright light and my eyes watered incessantly; can no longer drive out of my neighborhood because of the opened flood gates blinding me. I went to six doctors, including a NP, ophthalmologist, family doctor, and dermatologist. Finally, the dermatologist had blood work done and discovered hyperthyroidism. That led to surgery removing my thyroid because the surgeon also discovered thyroid cancer. I must take thyroid replacement pills daily. Cancer surgeon said she got it all and that was a hopeful prognosis, but the eyes got worse and worse.

My eyes got worse

They bother me all the time. I carry two hankies wherever I go to constantly blot them. They bulge out of my head, and I constantly wear sunglasses, embarrassed to be seen by anyone because I look like a monster. The headaches are nearly constant and include neck pain and earaches. Using prescription Xiidra eye drops daily, but they're outrageously expensive - about $150. monthly, and are only a minimally temporary fix. Going to the Occuloplasty surgeon in March. I don't want the surgery, but feel I have no other choice.

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