Excellent presentation Dr. Kossler! This is collectively the best video I’ve seen on the subject of TED. There’s not a lot of literature, or videos available to truly explain the process/sequela of the disease. It’s a debilitating, isolating and painful condition to live with. Thanks for the thorough delivery of information of this complex disease.
How Warmly and Concisely Dr.Kossler spoke for that Very Informative presentation. I had TED 8 years ago with almost All the attendant problems brought-on during this talk-except any Surgery-and NoTepotumumab-perhaps it wasn't available yet. But What a Scary Time I had,and the NHS here in England was Great! All the Best and Thank you to you two Ladies,x M
I am beginning to think I may have TED. I have had pain and light sensitivity in my one eye for around a year and a half. The first time I had problems, my eye hurt so badly that I made an eye patch to wear for a couple of days. I have had pain on and off since then, with headaches in the temple of that eye. Most of my swelling is in the morning, and I have begun to take photos of myself on both good and bad days. As far as an autoimmune disease, I have the titer for Lupus, but it is not full blown. My mother and her father both had Myasthenia Gravis, and my mother also had Crohns, and my nephew has had Crohns since he was around 15. He is now 23. I will be making an appointment with my Optometrist soon.
Thank you for this video. I have had TED for 40 years. I’ve had decompression surgery, a mueller muscle replaced, and eye lid surgey many years ago. I am currently at my 7 infusion of Tepezza and hoping for good results.
My optician suspects I have TED. The referral time is long and I'm struggling at the moment just to arrange a basic thyroid panel due to NHS backlogs. I envy anyone who has access to Teprotumumab. It's not available in the UK. Sounds like this doctor's patients are very lucky to have her, too - her warmth for her patients comes across so well here. :)
Thank you Dr.Kossler. I am in the mild thyroid eye disease phase. I need help! My team just diagnosed graves and mile TED at the Ann Arbor VA Medical Center. Great people. What are they waiting 3 months to see me again? I don't want to wait for more pain and bulging to have this treated. Help please.
Thank you for this video. It makes me feel better about the radiation therapy that my surgeon recommended and the Tepezza treatment we are trying to get my insurance to approve
Doctor I’ve noticed most patients with TED have more problems with their left eye I am one as well. I am on a group in Facebook with people who have thyroid eye disease and the left eye always seems worse than the right. Why is this ?
I stopped eating ionized salt in any and every food . It helped a lot to bring swelling down. Stress was a big factor to increase it. Calm down and it will go back to normal....with help of homeopathy. No side effects of homeopathy. In 6 months I found no more pain and pressure.
I have hypothyroidism not hyper but my eyelids are now suddenly swollen over the top of my eyelids. You mentioned this just now as I am writing this. What treatment should I start to stop progression. I live in the U.K.
How I wish i could get Tepezza😢! It is not available in my country, and even of it was available still I could not afford since the price for ordering them is way toooo expensive! I wish I could get help
What happens to the antibodies that are blocked and could they cause any other disease issues ? When speaking of a normal thyroid, is that standard clinical thyroid range or considering optimal range?
I'm 36. Had Graves disease diagnosis in November 2021. Hyperthyroidism was treated with radioactive iodine. NOW 2/7/2022 I was diagnosed with TED. I'm nervous. They put me on 60mg of prednisone.
My eyes right now feel like they are on fire. I’ve had total thyroidectomy due to thyroid cancer. Left lobe out in 1973 and the rest out in 2007. When my eyes are really burning and are worse, I also experience painful pinpricks all over my body. This is going on now too. The endocrinologist recently changed the dose of my Tirosint from 137 mcg to 88 mcg.. I am miserable.
I had a thyroidectomy as well in 1995. right now I just have been diagnosed with TED after two years compainting my ichy and watering eye to my eye doctor. my eyes started to feel burning now and getting worse about two years ago. my thyroid doctor changed the dose from 122 mg to 88mg, will this cause the problem? have you had any treatment? hope we all get better!
