Is It a New Active Phase of Thyroid Eye Disease?

I am always worried (scared - okay, beyond terrified) that something bad will happen and thyroid eye disease (TED) will rear its’ ugly head again, launching itself into a new active phase. I have been through so much - years of pain, tears, and surgeries. It is hard to imagine how I would be able to handle it if my symptoms start all over again.

I am sure you could imagine my worry when I began to sense some concerning feelings - mild/occasional pain in the orbital area inside my head, dryness, watery eyes. I have also grown frustrated by the slight changes to my vision that I have seen over the past decade. Did my eyes recently get a little bit worse, or am I just becoming acutely aware of things that are not ideal because I am already a bit concerned?

I asked my husband several times to look at the placement of my eyes. Are they pushing forward again? He said no, not that he could see. And I recalled that my doctor had told me that through an exam he would be able to see other more subtle signs of symptoms resuming before I would notice the placement of my eyes changing.

Could this be something else?

“Okay, don’t freak out,” I told myself. “Just book an appointment with your specialist. This could all be caused by something else entirely.”

And it’s true - I am going to physical therapy for chronic neck/back pain, which has gotten worse over the past few months, giving me debilitating headaches. Perhaps the feeling in my orbital area is simply from my headaches getting worse?

And it’s winter! My least favorite time of year for navigating thyroid eye disease. My eyes are often dry, but the intense dryness of the cold air becomes even more irritating in the winter, often causing my eyes to overproduce tears.

And what about the vision? To me, vision changes are like watching my hair grow. There was no sudden loss in vision. Just a frustration that my vision is not perfect. I never experienced vision changes due to TED - simply slight changes as I have gotten older. A very normal thing, so yes, maybe with my other concerns in mind I am just noticing this more.

Returning to my specialist: Is this a new active phase of TED?

I was previously excited to “graduate” from my regular appointments with my TED specialist - I would just need to come in for a check every 6 months to monitor things. But there I was, walking into the office 3 months early.

“I’m glad you came in,” my doctor said. “Peace of mind is so important.” He listened to my concerns and performed a thorough exam. I always feel so taken care of in his office. After years of appointments and 4 surgeries together, he probably knows my eyes like the back of his hand.

Sure enough, he said that things looked great. No changes. Yes, my eyes looked a little dry, but again - winter. We suspect that I was right - the things I was noticing were likely caused by my headaches, the season, and that my vision has changed a bit as I have gotten older. Thank goodness.

I understand that I am extremely fortunate and privileged to have a TED specialist in my city and one that I am able to get an appointment with fairly quickly. I know that is not the case for most people. As long as I have access to this care, I have given myself permission to book an appointment whenever I feel nervous. As my doctor said - peace of mind is so important.

Have you had a similar concern about symptoms resuming? You certainly are not alone, and the community is here for you.