What Was the Most Unexpected Symptom of TED?

Your journey with thyroid eye disease (TED) is not exactly the same as anyone else's. People with TED may experience the different phases of the condition differently when it comes to symptoms, sensitivities, and treatments. We can learn from one another's experiences, and see similarities between another person's journey and our own.

A person with TED may expect to experience several of the more common symptoms, such as eye pain, swelling, or vision changes. But we also know that sometimes people have certain symptoms they did not expect.¹

We asked our Health Leader team to share about their personal experiences with unexpected symptoms.

Changes in depth perception

"The most unexpected symptom of TED for me was the depth perception issues. The way they manifested into my reality so quickly after the double vision came. It’s as though they tagged along with the double vision. I was walking down a hallway to go see my eye doctor about my double vision when I noticed the wall was off. It was the most bizarre experience to know there was something off about how I was perceiving my body in an unfamiliar space. I had never uttered the words depth perception before I felt it was off.

The depth perception issue caused a lot of bruises on my body, especially my legs. I would run into everything in a space. Door frames, edges of tables, countertops. I had very little understanding of my body in any particular space. The roughest was at home, the place I know like the back of my hand. I would get easily frustrated bumping into something because I knew that object was there and yet I somehow didn’t see it.

Even a year after the double vision had gone away and my eyes were slowly settling after the chaos TED had put them through, my depth perception issues were still going strong. I moved to another state for a few months, and I had bruises all over my legs because I wasn’t used to the space I was living in.

Today, 2 years after my depth perception was at its strongest, I will randomly run into something and question if that was me not paying attention or if some of my depth perception issues are quietly lingering in the background." –Kelly

Dry, achey, sensitive eyes, even in the inactive phase of TED

"Having been in the inactive phase of TED all this past winter, I have gradually become less vigilant about my eyes. I have felt like my days are no longer ALL ABOUT MY EYES! My eye surgeries are behind me, I no longer hide behind sunglasses, and the amount of bottles of eye drops I purchase are no longer excessive. Even though I personally feel like I will never have my pre-TED eyes, I know that it is only the 'educated eye' (like those of my TED peers or my doctors) that can tell I have TED by looking at me.

Now we are getting into the spring/summer weather, and to me that means kayaking, hiking and biking. The first day out on my bike I didn't even give my eyes a thought. I simply put on my helmet and threw on an insignificant pair of fashionista sunglasses. The sun was shining bright as I rode against the wind. A mile into my ride, I wondered if I should have worn my larger and unattractive wraparound sunglasses or tinted goggles.

That evening, watching TV was difficult as my eyes begged for relief. They were dry and so achy, and I struggled to see clearly. These symptoms persisted long enough to prompt me to use my gel drops that had been tucked away all winter. I was surprised and disheartened that my eyes were so affected, yet in reality I should have known better. The fact that I felt so casual about my eyes is a tribute to how far I have come since the onset of this disease. Throughout the rest of this season, I resolve to protect my eyes better, but I am not ditching my bike." –Roxann

Share with the community!

What is or was your most unexpected symptom of thyroid eye disease? How did you cope with this symptom? Share your experience with the community by clicking the button below.