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The true impact of Thyroid Eye Disease (TED) goes well beyond the eyes. It can also have a big impact on all aspects of life. While these changes may not always be visible, they shouldn’t be overlooked. Along with learning how to speak up for yourself with your doctor, there are small adjustments you can make—in and out of the house—that can help manage your condition and help you live the life you want.
Pain and changes to your vision or how easily you can move your eyes can limit how well you do certain tasks. This can include:
Learn about a few apps that can help you manage living with vision changes
Dealing with TED can be frustrating, and you may feel embarrassed about how it changes the way you look. It’s not uncommon to feel:
Learn about some apps to help you with the emotional changes of TED
How you live with Thyroid Eye Disease can change your social life and your relationships because you may feel self-conscious/embarrassed about the changes to your appearance. For example, you may:
Connect with others who understand what you’re going through
If you’re like most people, your smartphone or another electronic device is never out of arm’s reach. But TED can cause vision changes that:
Be My Eyes is a free app that connects people who are blind or have low vision with sighted volunteers for visual assistance through a live video call. Every day, sighted volunteers lend their eyes to solve nonmedical tasks both big and small to help people lead more independent lives.
Evernote is a free app for your smartphone, tablet, and computer. It allows you to voice record your notes, to-do list, and can even set reminders. The beauty of Evernote is that it syncs automatically across all of your devices, and across all operating systems.
Audible is the world’s largest producer and provider of spoken-word entertainment and audiobooks, enriching the lives of millions of listeners every day.
The Snap&Read app reads aloud the text from websites, images, photographs, PDFs, and more. Snap&Read also adjusts complex text to be more readable and can translate text into over 100 languages. You can even take a picture and have the text within that picture read aloud.
NaturalReader is text-to-speech app that reads webpages, documents, and e-books aloud with quality, natural-sounding voices.
Calm is an app that helps you sleep better, stress less and live better. Calm offers the life-changing skill of meditation, calming sessions to aid sleep, and exclusive music to help you focus, relax, and sleep.
Through guided meditation, Headspace teaches the life-changing skills of meditation and mindfulness in just a few minutes a day. Helping people stress less, focus more, and sleep better.
Ron:
I’m Ron. I have Graves’ disease and Thyroid Eye Disease. I was in law enforcement for 33 years, and simultaneously in the military reserves for 27.
Vickie:
We’ve been married for 28 years. We were both in the Coast Guard reserves.
Ron:
As a police officer, I periodically would have some blurred vision. Little bit of dizziness. One day I looked in the mirror, my right eye was completely as far as it would go toward my nose and looking upward. I was horrified. I was panicked. I didn’t know what it meant.
Vickie:
So I said we do need to go get this checked out because obviously something is wrong.
Ron:
The bulging and movement of the eyeballs was compressing my optic nerves. There was some question as to whether I would go completely blind. Not a lot of people knew what was happening initially. Then ultimately an endocrinologist said, “Yes, I know what’s wrong with you.”
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After months of increasing symptoms and loss of eye function, Ron was finally diagnosed with both Graves’ disease and thyroid eye disease.
With Ron’s vision rapidly deteriorating, doctors decided they needed to act fast.
Ron:
To save my vision, and prevent me from going completely blind, they had to perform fairly immediate surgery. And they did the first of six surgeries. Living with Thyroid Eye Disease certainly has its challenges. I had to rely on Vickie either to get me to and from work, or to get me to the bus stop.
Vickie:
My take charge husband having to rely on me and other people when that was not in his personality, which increased his frustration.
Ron:
I was not allowed on a public bus one time because I couldn’t read the destination above the driver’s windshield. And I asked him, “Does this bus go to so-and-so?” And he said, “Read the, the thing!” And I said, “I can’t!” And he says, “Well, then get off the bus!” I said, “I can’t read it because I’m legally blind.” Which I was. There was no bus ride for me that day. My blurred vision and such deteriorated to the extent I knew I could not perform on patrol duty. The Chief and the Captain had me turn over my weapon, and suddenly I can no longer do the things that cops do.
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Today, more than two decades since Ron’s diagnosis, they push forward with strength and gratitude.
Ron:
There are days when my eyes will start to cross or wander around and I’ll have dizziness and blurred vision, but I absolutely refuse to be a victim. For anyone who is suddenly having an onset of blurred vision, please don’t wait, don’t take chances, contact an endocrinologist and an ophthalmologist. Both of whom are experience with Thyroid Eye Disease and Graves’.
Vickie:
And I would add, that even if you don’t know that those are symptoms of Graves’ or the onset of Thyroid Eye Disease, if you are having symptoms that are significant—and double vision is definitely a significant symptom of something—don’t just pass it off as “I’m tired.”
Ron:
Vickie has meant everything to me. All is not lost, it’s just the beginning of a journey that can still be a pretty good journey.
Vickie:
We just don’t let any of the good days or bad days stop us from doing anything.
“All is not lost, it’s just the beginning of a journey that can still be a pretty good journey.”
- Ron, real TED patient
“Never give up. Don’t quit. Find out who you are,
pull that strength from inside of you and say,
‘I can beat this’. ”
- LaQuilla, real TED patient
LaQuilla:
My life started changing in the nineties, ‘cause 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. One hundred 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 was out of whack, my skin complexion had changed—it was like the color of cigarette ashes.
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LaQuilla was finally diagnosed with Graves’ disease and Thyroid Eye Disease.
Thyroid eye Disease is often seen in patients with Graves’ disease, but is a distinct disease.
LaQuilla:
Thyroid Eye Disease is 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 me and say, “Oh my God, look at the monster!” It was a mental experience that I will never forget because all I could do was cry.
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LaQuilla eventually lost her vision in both eyes.
LaQuilla:
I was told I was never going to be seeing again. I was gainfully employed. I was in property management. But there was no way I could do the job that I loved 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.
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After seven years without sight, LaQuilla reached out to The Graves’ Disease and Thyroid Foundation for help.
They quickly connected her with surgeons who put her on a journey back to seeing again.
LaQuilla:
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. And that’s what I started doing. Because I wasn’t getting the help that I needed. The first doctor that I’d 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. And I was like, OK, 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 was key punching every symptom in. And when he didn’t understand a symptom that I had, he would go back and he’d say, “OK, now explain this symptom right here.” Not only that, but he had me come back every two weeks. He said, “Because of 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 think you need. Never give up. Don’t quit. Find out who you are, pull that strength from inside of you and say, “I can beat this.”
Get educational materials and informative emails to learn even more about living with Thyroid Eye Disease.