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Thyroid Eye Disease: My Story

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  • Natalie Kitchen says

    Hello, I’m so sorry to hear of your diagnosis. I was diagnosed with Graves’ disease and later thyroid eye disease about 4 months ago. I feel much better, but my eyes are getting worse. I’ve seen two eye doctors that tell me my hormones just need to be regulated & that my eyes will probably not look the same. I’m wondering how your eyes are now and if they ever got swollen or bulging what your treatment plan was? If you’re willing to share, if not I totally understand & wish you the best!

    • Carol Lincz says

      Hi Natalie,
      My name is Carol & I was diagnosed early November 2021 with Graves Disease and TED weeks after that.
      I felt very alone as to any information or support. I felt afraid & alarmed at all the changes in my body. The weakness, tiredness, total lack of strength & energy. So unlike me. I felt like my muscles were melting from my body. I have only phone call appointments with my Endocrinologist. He got me on medicine to rebalance my thyroid & after a month I stopped losing weight & gained some energy back. But he was not interested in discussing what the causes could be, or about the immune system, or about dietary & lifestyle changes that could help, no ‘do’s & don’t’. It’s all about the monthly results of my blood tests, period.
      About a month later, my eyes started bulging & were so very sore, red, watering, swollen & looked weird! Mornings were always the worst. I had to wait almost 3 months to see a specialist that told me I have TED & they can’t do anything & it could last 6 months – 3 years! The only helpful advice I received was not to smoke!!! So as both my “specialists” were less than helpful I knew I had to take matters into my own hands. I did A LOT of research and am now working with a naturopath & have changed to a Vegan. I bought a bed that elevates my head & I only sleep on my back, so my eyes are not as swollen in the morning. I keep a reuseable gel eye mask in the fridge for bad eye days. Also Garnier has a nice ‘anti puff eye roller’ that I keep in the fridge – feels great anytime It’s all about reducing inflammation. No salt, (which is impossible, but I have drastically reduced my intake, especial iodized salt), no gluten, no sugar, no saturated or transfat, no deli meat, no read meat, no dairy, reduce processed foods. I’m on a lot of vitamins & supplements & micro greens that are relevant to Graves and TED. In a couple of months of my dietary changes, my eyes are SO much better! I still have the ‘stare look’, but not so bad. My right eye has always been the most swollen for some reason and still is. No-one understands what its been like for me, not even my family. I look down when i’m in the stores etc…sometimes I have such a short fuse, little things really bother me. I don’t want to go out, or attend special functions because I fell like I look awful 🙁 As to if we’ll ever look the same as we used to, no-one seems to know and I’ve done tons of research. My plan is to get through Stage 1 of TED as quickly as I can by getting my body and immune system as strong and healthy as possible. I’m starting up yoga again as I’m feeling strong enough again. Good Luck with your journey. If you want to email me, please do. [email protected]