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I was diagnosed in 2016. I have an Instagram account where I offer support to others who are now dealing with the awful effects of TED

I’m waiting to be diagnosed or not with TED, however I have a history of a Graves’ disease and exhophthalmus 55 years ago. YEAH…..long time ago. Supposedly my thyroid gland was destroyed with radioactive iodine treatment, but right bulging eye is starting over again.

Hi, IAM Pamela, I've currently had one Tapezza infusion, and felt fine...until a week later, extremely tired all the time, very nauseous and dizzy sometimes to the point that I have difficulty standing or walking. Just wondering if anyone could share with me more about how long the side effects last. Thanks so much, and so happy I found this forum!!! 😁

Hello. I'm thankful to have found this site, as it's been helpful to me as I'm discovering I am not alone in the challenges with TED. I was diagnosed with Graves Disease in 2001 and had RAI. I'd tried anti-thyroid drugs, but had an allergic reaction. I've felt I was ok with the thyroid supplementation all these years. I've had no real issues. Regarding my eyes, I felt that my left eye had enlarged slightly, but it wasn't that noticeable. I never spoke of it to a doctor. 2-3 years after RAI I had incidents with dry eye with significant grittiness and redness. I tried to see my ophthalmologist, but the appointment staff were unhelpful. It cleared up, but I continued to have dry eye - but actually, I didn't know I had dry eyes until 2007 when I had Lasik surgery, and there was a problem with the corneas kind of "falling apart". They healed well, though it was due to the dry eye that the surgical problems occurred. Since then, I've used an ointment at night and daytime lubricants. I knew my Graves Disease was latent, but didn't realize I could have a flare in any form. In 2022, I was diagnosed with Melanoma. While that tumor was growing (I thought it was a skin infection from me scratching it), I had chemosis mostly in my right eye, but it also developed in my left eye also. Steroid drops did nothing. I was put on oral steroids, and they began to help, but I had to go off them because I was going to have melanoma surgery, and the steroids caused my blood glucose to go too high, so I couldn't have surgery with high blood sugars, so I had to step down from the steroids. They did help the chemosis somewhat, I just couldn't stay on them long enough to help fully. I now have full chemosis in both eyes, with my right eye crossing, causing double vision. My TED specialist suggested Tepezza, which I originally was OK to try, but he stated concerns about hearing loss that weren't reversible, and that he was doing a study on that issue related to Tepezza. Since then (2 weeks ago) I've decided against Tepezza for now; partly because of the hearing loss and tinnitis (which I have already and don't want to worsen), and because I'm taking immunotherapy this year to try to prevent recurrence of the melanoma. I just seemed too much to take two infusion medications. Maybe I'll do Tepezza later? I'm unsure now what treatment strategies I'll undergo; am assuming steroids and later surgery? But I'm seeing that some do the surgery anyway after Tepezza? I'm also seeing references to active vs inactive phases of TED and/or Graves... I'm unsure of the impact of the phases after you've had Tepezza or more traditional treatments. I was hoping my TED specialist would get back to me yesterday or today, but that hasn't happened. Will call the office to initiate some communication. Oh, I'm also waiting for the endocrinologist referral to kick in and for them to call with an appointment. If I go on Tepezza or steroids my blood glucose will soar, and will have to be managed. Thanks for letting me pour my heart out.