In November of 2016, I started feeling super fatigued. I remember complaining to my husband that it was hard for me to tie my shoes. Just the laces slipping through my fingers hurt. At the time, I’d been working 10-hour days for six to seven days a week as a robot operator at an automotive supply company in Indiana. I figured working so many hours was just wearing me down.
But in early December, my symptoms escalated. I started having super shaky hands. Then, one evening, I was so weak I couldn’t even stand up to get out of the bathtub. I had to take breaks while getting ready for work in the morning because I was exhausted. Again, I thought this was just because I was being overworked.
One day in January 2017, I felt really weird and spacey at work, so I went to the first aid room and took my blood pressure. My resting heart rate was around 155 beats per minute. I rushed to urgent care and was sent to the ER.
After a slew of blood tests and imaging tests, I was diagnosed with Graves' disease, an autoimmune disease that causes your antibodies to attack your thyroid and increases your body’s production of thyroid hormones, resulting in hyperthyroidism.
Doctors never told me why I may have developed Graves' disease. I’ve read that stress can be a trigger for it if you have genes that increase your risk, and I was going through a divorce at the time. I was put on medication to stop the overproduction of thyroid hormones and block their effects on my body.
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In March of 2017, about four months after my Graves' disease diagnosis, I was starting to feel better. But I began to see subtle changes in my eyes.
One morning, I noticed that my upper eyelids were swollen and my eyes were red. Although I didn’t typically have seasonal allergies that time of year, I thought that was the most likely culprit, so I took some over-the-counter allergy meds. That seemed to help with the redness a little.
My eyes also felt tired and gritty, and if I rubbed them, my right eye would get broken blood vessels. But a friend assured me that this was normal, telling me it happened to her sometimes, too.
It wasn’t until mid-April 2017 that I realized something was really off.
On Easter Sunday, my niece made a face at me from across the table with her eyes opened super wide, as if she thought I was making a bug-eyed face at her. But I wasn’t.
I looked away from her and felt like crawling in a hole. Wow, I thought. At that moment, I knew that the changes in my eyes were real and noticeable.
Soon after that, I visited my primary care doctor. I even brought in old photos of myself to compare to recent ones. One photo of me from the side was particularly concerning: I could see that my right eye was bulging. However, my doctor told me the photos might look different simply because they were taken at different angles. I left his office without any answers.
When I got home, I started Googling “bug eyes” and “droopy eyelids.”
That’s when I found out about Graves’ eye disease, also known as thyroid eye disease (TED). As I learned, puffy eyelids, a gritty feeling in your eyes, and bulging eyes could all be due to swelling from an abnormal immune reaction to the muscles and fatty tissue around my eyes.
While it’s not a given when you’re diagnosed with Graves disease that you’ll develop TED, up to 50 percent of people with Graves’ disease have eye symptoms, most often within six months of their diagnosis, according to the American Thyroid Association. This may be because the same out-of-whack antibody that attacks your thyroid can also target your eyes.
I suspected that this was what was going on with me, so I went to an optometrist that spring and asked for a referral to an eye doctor who worked with TED patients. He ignored my requests, but I walked out with a new pair of glasses.
After more research online, I found an eye doctor and surgeon near me who worked with TED patients. At my first appointment, the doctor told me he wasn’t sure if I had TED, and if I did, it was a mild case. He advised that I schedule a follow-up appointment in six months.
When I went back in, they told me there was nothing they could do to help with my swollen eyelids or bulging eyes—I’d just have to live with them. I left completely devastated and cried all the way home.
While the symptoms weren’t all that painful, looking in the mirror and not seeing the eyes I was born with did emotional damage. I became a recluse and couldn’t even go shopping by myself without having panic attacks. That, along with the weight gain from taking thyroid medication, destroyed my self-esteem and confidence. When I did have to go out, I wore my bifocals to hide behind them. I also tried to cover my right eye (the worst of the two) with my hair.
As the months went on, I kept searching for an eye doctor who could give me a second opinion. I eventually found an eye surgeon who specialized in TED and started following him on Instagram. He practiced in Los Angeles, California, but he’d started his career in a city near me. I made an appointment at his previous office.
In mid-2018, I was finally diagnosed with thyroid eye disease.
Since these doctors specialized in thyroid eye disease, they knew everything to look for. My doctor checked for proptosis (bulging eyes), eyelid retraction (abnormally high eyelids), and dry eye. I had all of the above.
When the doctor told me I had TED, I was excited because I knew there had to be a solution. However, as I learned, there was no treatment available for me beyond watching and waiting. Usually, symptoms of thyroid eye disease are mild and the swelling can go down within half a year to two years. After that, if your symptoms are still bothering you, surgery is an option.
In the meantime, I started using eye drops for the dryness.
In July 2020, I flew out to California to have surgery on both of my eyes.
By then, my thyroid eye disease was in the burnout stage, meaning my eyes had remained the same for a year and a half. The swelling in my eyelids and eyes had gone down, but I was left with excess fat in my cheeks, and my eyelids were still pulled back. My eye shape had also changed from the tightening of my muscles.
I chose to have corrective surgery because I wanted to recognize myself in the mirror again. To give my eyes back their normal position and shape, I had orbital decompression surgery on both eyes, lower and upper lid repair, and buccal fat removal from both sides of my face. Currently, I’m still healing from surgery, and it can take up to three months to see end results. But already, I can see myself in the mirror instead of someone I don’t recognize.
This experience taught me that it’s important to advocate for yourself. If doctors tell you there’s nothing that can be done to help you and you know something is wrong, do your research and find someone else. Look for a doctor who is willing to listen to you and understand what you’re going through. They are out there.
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