The Start of My TED Journey

I had noticed my sunglasses were not fitting right about a year before I was diagnosed with thyroid eye disease (TED). I thought someone had sat on them or I had bent them out of shape and that was why my eyelashes hit the lenses. Then, I started getting sicker and sicker, going to doctor after doctor, until finally I was diagnosed with Graves' disease.

My Graves' disease symptoms

When Graves disease is causing your heart to race, your hands to shake, and your blood pressure to skyrocket, you think your vision problems are part of the package and will subside when your thyroid levels get back under control. For me, Graves' disease also caused brain fog. My normal curiosity was replaced with worry and an overwhelming feeling of dread. I was afraid to research my symptoms.

Everything I looked up was horrible, even TED. I thought I could not possibly have that disease and if I did, I surely would not have the worst case. I’m never that statistic!

Even as medication was bringing my thyroid levels under control my vision continued to deteriorate. I developed a large grey spot – a blind spot – in my field of vision and it was getting bigger. Luckily, I live in a large metropolitan area with good healthcare providers and after a while, I was able to get an appointment with a neuro-ophthalmologist.

This was the start of my thyroid eye disease journey.

A journey I had no knowledge of, no experience with, and no inkling about. I sat in that exam chair dazed. Not only was I in active TED, but I was also losing my vision. My doctor rattled off possible TED treatment options – multiple surgeries, steroids, radiation treatments, and cancer drugs.

He thought I should start IV steroids within the next few days and schedule orbital decompression surgery immediately. My optic nerve was being squeezed, my eyes were protruding and the resulting blind spot was large and growing. I needed to act.

Being thrown curveballs

In retrospect, it’s funny, every step of the way I thought, "Well this treatment will work and I won’t need anything else." Being diagnosed with an incurable chronic disease is life-changing. At times I have been unable to do the things I love to do. I have also lost a level of independence because at times I have not been able to see well enough to drive or navigate walking on uneven sidewalks.

I think the worst part of this disease is the uncertainty. I did not know how much my life would change. I did not know how much medical treatments would change. My doctor cannot tell me that either. During one of my last appointments, he mentioned that some people have “chronic” TED – meaning they never get into an inactive stage!

Here I am waiting for my 5 to 6-year mark so I can cruise into my inactive phase and he throws this new curveball at me. This might have been one of the saddest things he has ever said because this one means the endless round of surgery and medications might not stop and that my vision deterioration may continue to go through periods of ok and not so ok – and maybe those ok times will continue to get worse.

Will I ever fully understand?

As I sat in that eye exam chair that first day, my doctor tried to explain TED to me. How much of it I understood that first day I cannot say. I was stunned that this disease might cause me to have permanent vision impairment. Actually, I am not sure I have come to grips with that fact even now...4 years later.

I did not understand then that the next 4 years would revolve around treatment for TED. Although I know I have TED, I still do not feel as if I really know what that means for me.

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