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I had RAI 18 years ago and developed TED and Pretibial Myxedema. Sadly, my saint of an endocrinologist passed away four years ago, and, even though I live in an area with a medical college, I couldn’t find an Endo who would take thyroid patients. I would have to drive 2 1/half hours to Rochester to see one, and there was no guarantee that they would take me. So far, no luck there, but I am seeing the PA who worked with my Endo.
Things have been pretty stable until they weren’t and we increased my Synthroid dosage from 137 to 150 six months ago. I felt a lot better in the beginning, but recently I’m experiencing lethargy and some depression which never happened before. I did some research. Which my doctors always hate, and Harvard did a study on hypothyroid patients over 65. It showed that as we age, our body has more difficulty creating T3. I’ve never had a Doctor Who would agree to a full thyroid panel, just TSH and free T4, so I have no idea what my free T3 level is. I’m just not myself and my tinnitus and edema are progressively getting worse. I would love to hear from other patients who are over 65 and have had RAI. Graves is such a lonely disease. My other doctors tell me that it’s no big deal and I should stop worrying about it. Thank you.
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