Third time is a charm

Hello, dear community,

I’ve been reading your stories over the past year, and they’ve been a huge source of support for me. Your experiences have helped me tremendously.

I was diagnosed with Grave's disease in 1997 and underwent radioactive iodine treatment at that time. In 2003, I developed exophthalmos in my left eye, which was managed with eyelid surgeries. This marked the beginning of my relationship with my local ophthalmologist. Then, in 2016, I had a second, less severe active phase in my right eye and once again underwent surgery.

At the time, I jokingly told the specialist that I hoped he wouldn't retire soon, given that I was a "returning customer." Why did I mention this?

Another Active Phase

Last December, I started to experience early signs of another active phase—red, swollen eyes—which was much worse than previous episodes. I was wearing sunglasses on a gloomy winter day because my eyes had become so sensitive to daylight, and I was seeing double in my left eye.

I live in Canada, and unfortunately, we do not have access to the new medication, Tepezza.

When I saw my ophthalmologist, I was immediately started on weekly infusions of prednisone, which helped me respond well to the treatment.

At first, I was desperate about the outcome—bulging eyes, double vision, and trouble judging distances (I've lost count of how many times I’ve missed a step on the stairs). I also had to take long-term sick leave as I need to drive for my work.

How did I cope?

For more than 8 months, every morning, I would wear a frozen eye mask for 15 minutes while meditating before starting my day.

I even contacted a case manager for an ongoing clinical study on TED medication, but I wasn’t eligible because I had been diagnosed more than 12 months ago. I also felt that this was unfair, as I’m an active, healthy, and sporty woman who always prioritizes my health. (I’m also a registered nutritionist.)

Now, my condition is stabilized, and I’m waiting for reconstructive surgery in mid-2025. I also wear glasses with prisms to correct the double vision. Some days my eyes are better than others. I still train at home, but I can't go cycling alone because my husband worries. I can’t swim in lanes either because I can't wear goggles.

I need to bring photos of my eyes before the active phase to my next visit. It pains me to look at pictures of my eyes when they were normal.

What I have learned

That said, I feel very blessed: I have a loving, understanding husband, family, and close friends, and I still have my work. I have excellent benefits for long-term leave, so I don't have financial concerns.

I’ve learned to slow down, bake sourdough, read more, and most of all, accept TED. I no longer wear makeup due to my eye drop regimen, and I try to avoid pictures because I don’t want to be reminded of TED.

I never underwent orbital decompression surgery, and I would love to hear about others’ experiences with the surgery from a patient’s perspective.