Be Your Own Best Advocate
You have the power to take control of your care
Once you’ve found a Thyroid Eye Disease (TED) Specialist, you'll want to make the most of your time with them on appointment days. Before your next visit, use the tips on this page to help you speak up for the care you deserve.
6 tips for Thyroid Eye Disease self-advocacy
1. Don’t downplay your symptoms
You may feel reluctant to express your feelings about having Thyroid Eye Disease (TED) and how it’s impacting your life.
However, what you may see as complaining, your doctor will see as valuable information that he or she can use to help better manage your condition.
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2. Be specific
The less detail you give your doctor about your condition, the harder it can be for them to understand the true impact of TED on your life.
When describing your symptoms, be sure to:
- Use descriptive language: “I’m very sensitive to light. Even the light from a computer hurts my eyes.”
- Make a list of the ways TED has affected your daily life: “I’m not able to drive anymore.”
- Identify how long TED symptoms have been bothering you: “I first noticed pain behind my eyes about 2 weeks ago.”
3. Keep track of your symptoms
TED can change over time. The symptoms you have may get worse or better, and you may have new symptoms develop over time.
Every change is important and keeping track of it all can help your doctor better manage your care.
Answer a few questions to track your TED symptoms:
4. Ask questions
If you have questions about TED, don’t be afraid to ask. Be sure to write down a list of questions to ask before going to your appointment.
These questions can help get the conversation going:
- What specific changes should I look out for when I check my eyes?
- How often should I schedule appointments for my TED?
- How will we treat my TED?
This helpful guide can help you to start a conversation with your TED Eye Specialist.
5. Take notes
Taking detailed notes during your doctor’s visit is an important way to stay up to date about your condition. On appointment days, be sure to bring a pad and pen with you.
If you find it difficult to take notes and listen at the same time, ask your doctor if you can record your conversation using your phone. That way, you can focus on what they have to say and take notes later.
6. Bring a friend or loved one along
Doctor’s appointments can be emotional. A friend or loved one sitting next to you during an appointment can help put you at ease. Since they’ll be in the room with you, they can also help you by taking notes during the appointment.
Real TED patient. Real TED experience.
Watch what a patient living with TED has to say about taking charge of her care.
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.
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.
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.
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.”
“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.”
— LaQuilla, real TED patient