r/ThyroidEyeDisease

For a bit of context: I was diagnosed with Graves at ~20 yo in 2010. Had intense active TED for 1-2 years (intense bulging, eyelid retraction in one eye) and once it went inactive, I was offered orbital decompression or eyelid lowering surgery. I have severe myopia (about -7.5) in that eye and my mom was scared of me going blind and I took her advice and only did the lid surgery. Although I look less "different", my eyes are still very asymmetrical and my right eye still bulges about 2mm more than my left eye, so it is noticeable).

I kind of try to live with it, and I have overcome some agoraphobia that I had in my mid 20s due to my appearance... Since then, I also have had TT because of a nodule and 5 years ago I had cancer in the lymph nodes, and another surgery. Although I am not cancer-free, I am stable, which I'm grateful for. At the same time, with all the health issues, I'm just waiting for the other shoe to drop and the cancer to flare up. I am still self-conscious and sad about the way my eyes look. I'm generally not super attractive but my eyes were my best feature that I often got complimented on. Now others avoid looking at me.

My first surgeon retired pretty soon after my surgery so I couldn't go back to him (he was an angel). I went to see another surgeon a few years ago that didn't want to do the orbital decompression because she said I don't have any functional issues (no double vision, my eyes are pretty healthy, just some pain), she said the orbital decompression is a big surgery, and instead she offered to give me a new eyelid crease and botox. I refused since the issue is the bulging not the crease and I didn't want to be getting botox.

I've been single for the past 5 years and my ex-bf broke up with me because he couldn't accept the asymmetry... I know I'd rather be single than with someone who only loves me superficially but attraction is the entry point so I'm trying to accept that I might have to find love in other ways... It's hard living in such a superficial and work-obsessed society. I need lots of rest and get burnt out easily. Nobody in my life understands because they don't live with chronic illnesses or facial differences.

Hello, i am scheduled to do my follow-up orbital and brian MRI with contrast this Friday but i am worried that it might cause a flare up as last time my eyes became really bad after mri but doctors say it was unrelated. Could you share your experiences please. Thank you.

Hi there.

As the title says, I wonder if anyone here has tried red light therapy to reduce inflammation.

I was thinking about how lately there have been some studies regarding the potential of red light therapy as a non invasive complementary treatment for inflammatory conditions. I feel this would be helpful specially during the active stages of TED and after.

Has anyone tried it and seen good results?

If so, is there any red light device for the eyes area that you recommend?

Thanks in advance.

💜Next support group is May 17th!!💜

Hi friends! My name is Elena and I have Graves and TED (Thyroid Eye Disease). I am hosting a support group circle this week! It will be on Sunday May 17th at 12pm EDT (New York time). It’s free no sign up neccessary. No promos no soliciting allowed. Just heartfelt connections. Don’t need to participate it’s ok to just listen in. Camera on or off, you choose! Would love to see you there, please let me know if you can make it! Lots of love 💜

Thyroid Love Club 🦋 Graves & TED Connection Call
Sunday May 17th · 12-1 PM EST (New York)
Google Meet joining ID: edw-xwrd-atu
Or visit this link: meet.thyroidloveclub.com

https://meet.google.com/edw-xwrd-atu

Hey i’d love to hear anyone’s experience with steroids for TED? I am being recommended for either 3 months of weekly steroids or my 2nd round of Tepezza. I feel very guilty as after my second round goes- I had a medical burn out and stopped taking my thyroid meds even though I FULLLYYYY know better. I have a different care team who I feel really great about and a strong sense of purpose for getting better. I am very worried about the effects of steroid use. I didn’t hate Tepezza my first round. I did have tinnitus but it has since gone away. My original care team did not do an audiology test so I do not know what my baseline was but I feel *mostly* okay in the hearing department. I am getting married in 6 months and i’m feeling very self conscious all over again. I sometimes wish I was fine with my appearance and would get over it but that day hasn’t happened yet.

I recently received MRI results to help diagnose TED related changes as I’ve been experiencing dry eye and puffiness/asymmetry. My results showed only mild superior rectus enlargement on both eyes but more pronounced on my left. I’ve been trying warm/cold compresses to see if they help the asymmetry and overall symptoms. After I use cold, I feel some tightness/pressure. Does this mean it’s working? Is it making things worse??? Can’t see a Ted specialist until July.