Learn more about thyroid eye disease symptoms, risks, progression, and surgical and non-surgical management.
Transcript:
My life started changing in the 90s because we noticed that my eyes were always swollen. We didn’t know what it was. In 2000, I started losing an enormous amount of weight – 100 pounds in less than a month. That’s when they discovered that I had what’s called hyperthyroidism.
I was losing my hair, my nerves were out of whack, my skin complexion had changed – it was like the color of cigarette ashes.
Thyroid eye disease – it’s like your eyes are full of sand, sand from the beach. That’s how dry they are. They get dry, they get teary, and they begin to protrude. They bulge out like you’ve been shocked by a ghost. Because everything was going on for so long undetected, I had lost the sight in my left eye. I began to rapidly lose sight in my right eye.
I never went out. I wouldn’t let nobody see me. I covered all the mirrors in the house because I didn’t want to see myself. When I walked to the mailbox, the kids used to tease and say “Oh my god, look at the monster.” It was a mental experience that I’ll never forget because all I could do was cry.
I was told I was never going to see again. I was gainfully employed – I was in property management – but there was no way I could do the job that I’d love to do without vision. Thyroid eye disease took a lot from me. I couldn’t see my children for seven years. I could hear their voice, feel their touch, but not see them. That was unacceptable.
There is someone who can help me. I became an advocate for myself because I wasn’t getting the help that I needed. This was the biggest cloud I ever had, but I still found a rainbow and it was called Graves Disease and Thyroid Foundation.
I had a total of eight eye surgeries. Thanks to all eight of those surgeries, I now have vision. I still don’t have the true vision that I need today, but I am grateful for where I am – to see my godson grow up, my goddaughter grow up.
My advice to anyone suffering from Graves’ disease and thyroid eye disease: you have to be strong and learn to be an advocate for yourself. That’s what I started doing because I wasn’t getting the help that I needed. The first doctor that I seen was not for me because when I was telling him my experiences, everything that I was going through, my symptoms, he just sat in the chair. He didn’t write anything down. I was like, “Okay, this is not the right doctor for me.”
But finally, I found another doctor. This particular doctor, as I was telling him my symptoms, you know what he was doing? He was typing it. He kept punching every symptom in, and when he didn’t understand the symptom that I had, he would go back and say, “Okay, now explain this symptom right here.” Not only that, but he had me come back every two weeks. He said, “Because these symptoms, we need to monitor.” That’s the doctor you want – that’s the doctor who’s paying attention to you, what your needs are versus what he thinks you need.
Never give up. Don’t quit. Find out who you are, pull that strength from within side of you and say, “I can beat this.”
