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Thyroid Graves Disease: Anyone else?
Autoimmune Diseases | Last Active: Jan 25 8:11am | Replies (30)Comment receiving replies
I have Thyroid Eye Disease, or I guess also called Graves Eye Disease. I was diagnosed May of 2021. I have had the Tepezza infusions, which were a temporary help, which lasted for less than 6 months. But now I am back where I started. I had my thyroid removed a month ago. Now just waiting for my body to adjust without a thyroid. I am unable to participate in many activities because of double vision, I have lost my independence. And self-conscious because of my looks. I wear sunglasses whenever I am out of the house. I was a pescatarian but recently read that fish and seafood were some of the worst foods for you to eat because of the iodine. I have had to educate myself on this disease and have been lectured by doctors for doing so. Even when I told them I only read from reputable websites. To say that I am exasperated, is an understatement.
Replies to "I have Thyroid Eye Disease, or I guess also called Graves Eye Disease. I was diagnosed..."
Hi Rose47, I had Grave Disease when I was just 23, it nearly killed me before my doctor saw me and knew immediately what was wrong.
From there he sent me directly to the specialist at the hospital who examined me and ordered radioactive iodine from St. Louis, it was flown by plane to our hospital in Seattle. It came in a special container and I was placed in a room with a special gown on too, from what I remember I had to open the box and take the medication before they came back in to get me. My hair got thinner too after taking the medication, I had many mood swings My eyes are big to this day, like Marty Feldmans, he had it too!
I been on a thyroid replacement since. Now I have a few other even rarer disease few heard of even the Neurosurgeon I saw yesterday said that it was OUT OF HIS Scope, and promised me that he would take time to learn about it, called Nutcrackers Syndrome a vascular disorder just had to cataract surgery Eye doctor said that it was probably due to having Graves Disease, I’m only 62! I saw double vision on and off at first, but check with your doctor it may be your hormones need more adjustment and then you’ll see better
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@rose47 I’m so sorry that you have thyroid eye disease. It must be so difficult in your daily life. I included a link to Mayo Clinic’s information because it talks about treatment for the eye disease.
https://www.mayoclinic.org/diseases-conditions/graves-disease/diagnosis-treatment/drc-20356245
Are you seeing an ophthalmologist for the double vision? I had it when I first got my autoimmune disease. Through my eye doctor, i was able to see an eye therapist who gave me some exercises for my eyes.
What treatment are you now getting for the eye disease?