Ask the Advocates: Diagnosis and Symptoms

A diagnosis of a rare disease like thyroid eye disease (TED) can be difficult to accept. People may feel overwhelmed, sad, frustrated, or angry. They also may feel relieved to have finally gotten a diagnosis. Everyone with TED has a different journey through diagnosis and post-diagnosis that includes different feelings, symptoms, treatments, and experiences.

We wanted to learn a little more about people's experiences with TED diagnosis, and symptoms. So, we asked our advocates to share some of their personal experiences. Here's what they kindly shared with us.

Getting a diagnosis of thyroid eye disease

How would you describe hearing your thyroid eye disease (TED) diagnosis, and the time that immediately followed? Was your doctor able to help you by making a clear set of recommendations and next steps, or did you have to find those out over time?

"It was a really surreal experience being told I had TED by a doctor who I had only met once before. For weeks, I had been trying to figure out what was going on with my eyes and vision. I had numerous tests done and met with a few doctors. To put a name to what I was going through was both a relief and very overwhelming. What did having TED mean, both for my health and my quality of life? How would this impact me as a person? How would I change? I had a lot of questions with zero answers. I was quite lost for a long time just trying to get through it.

I found a different eye doctor through the recommendation of my endocrinologist. My doctor said we would just monitor my progress with the disease and, if I needed to, I could be put on steroids to help with the swelling. I was really against doing steroids because my body doesn’t respond well to new medications, which my doctor respected. And then when I said I needed some relief because the swelling was too uncomfortable to live with anymore, I was put on them. It didn’t go as planned, so we decided to hope that time would heal me.

Fortunately, my eyes have healed a lot over time. They’re not what they were before TED, but they’re much better than they were when I was in the thick of TED." –Kelly

Symptoms with impact

Which TED symptom do you feel is the most upsetting? What symptom(s) of TED do you struggle with the most?

"The TED symptom I struggled with the most is the fact that one of my eyes was bulging more than the other. I had one eyelid muscle that was pulled back more than the other.

It was something that I felt was very noticeable, and it made me incredibly self-conscious. At times, I didn't even want to leave the house. That symptom also had a negative effect on my mental health. I think at that point, when my eye was the worst, was when my mental health was also the worst it has ever been. My anxiety was really bad, and I was upset all the time. I felt like everyone I walked past noticed my eye, and I was embarrassed. I didn't even want to take pictures." –Jill

What about you?

Our advocates shared their personal experiences with these questions, and we want to learn more about your experiences! Please answer one or both of these questions in the comments below. Or share your story with us by clicking the button below: