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How long does it take for TED to become stable and inactive?

I want to get orbital decompression surgery but my eyes are worsening and the disease is active right now. How long did it take for the disease to become inactive? And did I’ve steroids help TED become stable and make anyone stable for surgery?

  1. Hi , it is different for everyone, unfortunately, and so it is hard to say, but for most people, the Active Phase lasts anywhere from 6 months to years. You can read more about the phases of TED here: All the best, Sam S. (TED Team).

    1. Hi, I’m sorry to hear that you’re going through this. I just wanted to chime in with my experience - everyone is different, but it took over a year for me to stabilize. My doctor wanted both my thyroid levels and eye symptoms to be stable for 6 months prior to surgery. He didn’t recommend steroids in my case. It was a long and difficult wait due to extra pandemic-related factors, but I was so glad to have finally gotten surgery. Please feel free to let me know if there’s anything you’d like to talk about ❤️ Wishing you a peaceful day, Jessica H (, team member)

      1. Hi Jessica, thank you for the response. How were you able to stabilize your eyes? My TSH and FT4 are starting to regulate finally 3 months post TT surgery. But my antibodies and eyes have been getting worse, just started oral prednisone and not helping yet from what I see. I’m 27 and tbh this amongst other illnesses are ruining my life. Please let me know if there is a way I can DM you, I would be highly appreciative just to discuss TED related matters in more detail

        1. I’m glad to hear that your TSH and FT4 are stabilizing. I also had a total thyroidectomy before orbital decompression. But there is nothing that I did to stabilize my eyes, I just had to wait for TED to run its’ course. Unfortunately, there is so much that is unknown about this disease. I can definitely relate to the feeling of TED drastically impacting quality of life. If you click on my profile you should see an option to send me a direct message. Wishing you a peaceful day, Jessica H (, team member)

      2. Thank you . How did you know when your TED was stable? Was that through TSH and FT4 levels and antibody levels all being stable, as well as physical symptoms? I’m trying to find it the DM option it’s not popping up for me under your profile. Thank you!

        1. sorry about that. I’m checking in with my team about DMs. Otherwise, happy to chat here as much as you’d like. I remember having this exact question about stabilization. I wish there was a marker that would tell me instantly when that happened, but my doctor explained that we would realize when I am stable in hindsight. I had appointments about every three months. He took measurements, looked at the damage and documented notes. He looked at a lot of factors, most of which I could not measure or see myself. I also did my best to help track symptoms on my own. Here’s an article I wrote about it - Once things stopped changing for several months he told me I was in the inactive phase. He did want my TSH/T3/T4 stable before surgery, but he looked at the physical symptoms of TED when discussing the active/inactive stage. I know that it’s frustrating. Hope this helps a bit. Best wishes, Jessica H (, team member)

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