TED

, TED can be tricky because it is an autoimmune condition! While it is most often correlated with having thyroid issues (usually hyperactive like with Graves' disease but also sometimes hypoactive), it is also very possible to get TED without a thyroid. This happens because it is the same antibodies that attack the thyroid and the eyes in the autoimmune response that causes TED but you don't have to have one to get the other. Does that make sense? Here is an article we have that might help explain it: https://thyroideyedisease.net/basics. Also, if you haven't already, it might be helpful to discuss your symptoms with your endocrinologist

I got it and I'm considered euthroid. That is no graves or hasimotos and even after surgery my thyroid is perfect. I actually got it from covid vaccine. I've had about 15 different doctors say it is more likely than not the vaccine caused it, and I know it did, but I am just one person and still recommend people get their vaccination.

I had Graves disease in my late twenties and had ninety five percent of my thyroid removed. I now have thyroid eye disease and I have my eighth and final infusion in a couple of weeks. The infusions are okay, but the side effects are frustrating. I've had pretty severe leg cramps at night, food tastes bitter, skin is dry and I've definitely had some loss of energy. The infusions have helped my eye bulging significantly. I am 64 years old.