TED - will I ever look like my old self?
Hi there, I was diagnosed with Ted at the end of last year and Graves in September last year, my ophthalmologist said the active phase last around 2 years, I would say I have it quite mild but the appearance of my face is getting to me, I used to look so much better than I do now, my question is will I ever look how I used to look before being diagnosed with these diseases? I have tried steroid drops but they did nothing, there isn’t that many options here in Australia and I don’t want to remove my thyroid. Any feedback would be great! Thanks!
, welcome to our community! You're not alone in struggling with the changes TED has had on your appearance. Everyone is different and depending on the severity and what treatment options you take will determine what your eyes look like after the active phase. Some in our community have written about how their eyes have not gone completely back to what they were before TED and how they are dealing with it; you can read one of those articles here: https://thyroideyedisease.net/living/the-other-side. Again, it can be different for everyone, so I would definitely recommend having an honest conversation with your doctor about what your expectations should be for when you are out of the active stage. I would also definitely recommend talking with your doctor about what other options there are for treating TED specifically; removing the thyroid is a treatment for Graves' disease usually; here is a list of them: https://thyroideyedisease.net/treatment. All the best, Sam S. (ThyroidEyeDisease.net, team member). Haleys2john, I have had TED's for 11 years now. I also have Grave's Disease, and have had my thyroid gland removed due to cancer, which was NOT diagnosed before surgery, just an overactive thyroid which would give me hormone dumps that caused so many problems. Having my thyroid removed did NOT help my TED's disease, it just made it easier to get my TSH back in a manageable range. Even that took over 9 years to get under control. But my body is different from anyone else I have spoken with, including all my many different eye doctors and endocrinologists. I have been in and out of the active stage 4 times already, and expect it to reactivate any time, I am just enjoying being in the inactive stage while it last. I have also had TEPEZZA and it made a BIG difference in the look and feel of my eyes, but I feel I will always be dealing with TED's the rest of my life. The decompression surgery saved my optic nerve, and helped with the bulging, the muscle surgeries on my eyes helped with the double vision for a while, but I am looking at another muscle surgery soon. Prisms in my glasses has also helped with the double vision, but the depth perception is always there, and the sensitivity to light, and inability to see at night will be with me always.
I pray you are able to get help with your problems, but I am reconciled to never being able to wear makeup again because of runny eyes, using eye drops every 4 hours due to dry eyes, (my eye lids do not close completely when I sleep), and expecting flare-ups from now on.
But I do know that my case is on the extreme bad side of the scale, and not what might happen to anyone else. GOD Bless and keep you in your journey through your TED's.
Linda Verbeck Ludecke, TEXAS.
I’m so sorry to hear that you’re going through this. You are not alone. I’ve struggled a lot with how much TED has impacted my appearance, and accepting the way I look now is an ongoing process. I’ve had multiple surgeries to treat TED, but my eyes will always be different than how they were before TED. I do have a fairly severe case, and it’s different for everyone. I’ve written several articles about my feelings as well as makeup tips that helped me feel more like myself. Feel free to take a look and always reach out if you need to talk - https://thyroideyedisease.net/author/tasty-meditation
Wishing you a peaceful day,
Jessica H (thyroideyedisease.net, team member)
