Hi all,
I’m here because I feel lost. Not sure anyone else feels this way. Here’s my story;
Started out being diagnosed with a thyroid storm in 4/20 during the pandemic. Thought it might be COVID symptoms or just getting old LOL! (I was 51). When I almost fell off a ladder and couldn’t get my breath I finally saw my PC and he was on it (so thankful for him). Started Methimazole, beta blockers etc. 1st endocrinologist I saw recommended RAI immediately and I said I needed to know more before I decided to do that. Changed diet and found a lot of information without scientific backing out there. After a year with this endocrinologist and another thyroid storm I left this Dr (BTW, the Dr had a great bedside manner which made it difficult to leave) and with the help from my PC found the endocrinologist I’m with now. In the meantime I started having eye issues and was diagnosed with TED and started Tepezza in early 2021. Tepezza initially worked and life seemed to start to get back to normal. Within 3 months after the last infusion I had relapsed and was dealing with hearing loss and a whole host of other side effects from my treatment. Went on infused steroids with no luck. Finally after almost 3 years on Methimazole my doctors and I decided it was time to do a thyroidectomy (all hormone levels weren’t normalizing and TSI was always high). My main reason for the thyroidectomy was hoping that it would get my TSI in check helping my eyes get better. Also, I’m very active (Mt bike, snowboard, camp etc), have a 14 year old I try to keep up with, and with my vision issues it makes things difficult at best. After the thyroidectomy my eye condition worsened dramatically and TSI level went up (my endocrinologist was perplexed to say the least). I was besides myself. Went back on infused steroids which helped initially but didn’t last. TSI is finally starting to go down, which could be because of the steroids, we’ll see in the near future. This past week my ophthalmologist has suggested to possibly try radiation therapy. Has anyone had RT? If so how’d it work for you?? Good luck to all of you and shoot any questions at me. I’m pretty much an open book.
