r/ThyroidEyeDisease

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.

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.

Does anyone else struggle with GI symptoms they never had before diagnosis? I have Graves disease and TED (diagnosed Feb 2025), and for the past six months have really been struggling with bloating, etc- things I've never dealt with before. My endocrinologist suggested cutting out gluten but I'm being stubborn. Anyone have experience or advice?

I recently saw my endo who upon taking one look at me said I have TED and my left eye was bulging. Personally I know my eyes have changed, and that’s why I booked the appointment. I didn’t think they were bulging, but my left eye looks more open than my right and comparing the two, my right eye looks more closed or smaller than the left.

Anyway my mri results came back showing:

Mild enlargement of the superior rectus musculature, left greater than right.

No other findings. My endo says this can still be TED and asked me to follow up with a specialist but I can’t see a specialist until July.

Does anyone have any insight on what I can do if anything to help my eyes get better? I have on and off dryness and my eyelids are uneven but everything else is okay at this time.

does anyone have any experience with tepezza in Canada. A close family member got diagnosed with severe TED and failed steroids, we have been struggling to get tepezza covered in Canada. from Amgen to commercial insurance, the whole process has been extremely stressful and has not gotten us anywhere

Has tepezza worked?

Have people tried alternative treatment like radiation/tociluzumab etc