A woman looks in the mirror at a monster shadow. She places her finger over the mouth to silence it.

My TED Symptoms Throughout the Active Phase

Last updated: August 2022

In a past article, I addressed my initial symptoms of eye sensitivity and eye pain, which lead me to search for a diagnosis. Before we get an actual diagnosis of thyroid eye disease (TED), many of us see multiple doctors for months or even over a year, as our symptoms rage on. The paper trail that followed me from the many optometrists and various other doctors, encompassed vague diagnoses such as allergies, makeup sensitivity, dry eyes due to the normal aging process, normal blue eye sensitivity, and one honest diagnosis of, "I simply don't know."

Finally a diagnosis!

My confidence took a hit as I imagined a big red checkmark next to the word HYPOCHONDRIAC, in the doctors' notes. I stopped complaining and challenged myself to continue my daily bike rides even when the sun or wind wreaked havoc with my eyes. My inner voice admonished me for feeling the pain in my eyes. When desperately rushing to get out of grocery stores or department stores, my bruised inner voice reprimanded me and pointed out that all of the other shoppers were simply unaffected by the white overhead lights and the seemingly blasting air conditioning.

I rejoiced when finally diagnosed with TED because I naively thought all I needed was the right prescription and action plan and I could put all of this behind me. Those of you who are my seasoned TED peers, know that this is not the case. The active phase of TED can last anywhere from six months to three years and wouldn't you know, mine raged for the full three years progressing beyond my initial symptoms.

My thyroid eye disease symptoms in the active phase

Swelling

During this time my next set of symptoms started messing with my face. There was swelling in the tissue above and below my eyes. We are not talking about the puffy-eyed look from lack of sleep. We are talking about bags under my eyes that looked like lifeboats! My eyelids became thick and heavy. There was no longer a crease in the eyelids below the brow bone. But it gets worse. I would go to bed at night after applying night gel to my eyes and a somewhat soothing cold compress over my face, only to wake up with a new development.

My eyebrow area was swollen! It jutted out in a way I can only describe as, "My Frankenstein Face!" I thought this had to be the worst...what could be scarier than this!? Surely this would be the end and I would go into the plateau phase.

Emotional changes

I didn't...in that simple sentence...'I didn't' I am feeling my desperate frustration at that time. I watched as "My Frankenstein Face" contorted into a scary face of bulging eyes (due to swollen tissue and muscle in the orbit of the eye) and retracted eyelids (due to impaired muscle mobility). Needless to say, it was a daily challenge to look in the mirror. Not only had my self-confidence taken a hit, but so did my ego. My inner voice was simply tired and cried along with me.

Vision changes

Three years was a long time to dare myself to look in the mirror every morning and wonder if my eyes, my face, would ever look normal again. But thyroid eye disease has no mercy. The swelling of the inflamed tissues and muscles in the orbit of the eyes causes vision problems, too. Eventually, the first thing that greeted me in the morning was TWO ceiling fans. Then throughout the day the double vision would come and go. If it persisted, I could close one eye to correct it. Yet, how long is it advisable to walk around with one eye closed when the opened eye is already challenged with blurred vision due to dryness and muscle fatigue?

Physical and emotional challenges in the active phase of TED

As I said before, while in the active phase, thyroid eye disease can have no mercy! Whether these symptoms come in a timeframe close to each other, or come and go intermittently, they are stressful to live around. They can impact your work life, your home life, your awake time, your sleep time, and your mental health. My TED Warriors, listen to yourselves. You are right! This disease is extremely challenging physically and emotionally. Be kind to yourselves. Have mercy on yourselves.

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