Thyroid Eye Disease

CONTENTS

Health Monitor Living
Thyroid Eye Disease

Getting the facts on thyroid eye disease
Thyroid eye disease (TED), also known as Graves’ ophthalmopathy, occurs in about 50% of people diagnosed with Graves’ disease, and not only can it change your appearance, but it can also lead to vision loss. Think you might have it? Read on for the facts about the condition, as well as the common symptoms and who is at risk.

Understanding the treatment options
Good news: Today we have a better understanding of thyroid eye disease—and many different ways to help manage it!

“TED doesn’t define us!”
From finding a treatment that works to self-care makeup tricks and soothing ice packs, Layla, Suzy and Christine share the tips that help them thrive despite thyroid eye disease. See if their strategies can help you, too.

Anxious? Feeling down?
You can get off the emotional roller coaster
Thyroid eye disease can come with a lot of difficult symptoms, but some of the toughest are mental—things like anxiety about the future and even an increased risk for depression. If you’re facing these challenges, you’re far from alone—and luckily, there are ways to help you cope.

Think you know all the facts on TED?
Answer the questions below to find out if you’re up-to-date on your knowledge of thyroid eye disease.

From finding a treatment that works to self-care makeup tricks and soothing ice packs, Layla, Suzy and Christine share the tips that help them thrive despite thyroid eye disease. See if their strategies can help you, too.

“My future finally looks bright!”
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LAYLA LOHMANN

Today, Layla Chafi Lohmann’s eyes feel good—she’s able to go outside without having to avoid sunny days, she’s waking up without feeling like there’s grit in her eyes and she’s free of headaches caused by double vision. But it wasn’t long ago that she thought these symptoms were just “a part of life” and one more thing she had to deal with on a daily basis.

Layla’s journey with thyroid eye disease (TED) began when she was 12 years old following a diagnosis of Graves’ disease, a condition where the immune system attacks the thyroid and causes an overproduction of thyroid hormones. One of the first symptoms of her Graves’, in fact, was the telltale bulging eyeballs associated with TED, which is when that same immune malfunction that causes the body to attack the thyroid also attacks the muscle and tissue behind the eyes.

At the time, there was little doctors could offer Layla to treat the TED, but they did opt to remove her thyroid when she was 15.

“I mistakenly believed that removing my thyroid would cure both conditions, so even though I was still experiencing severe dry eye, redness and tenderness after the surgery, I just chalked it up to allergies.”  

“I needed a better answer!”

Fast forward to 2015, Layla, now a dentist, is married to her husband, David, and pregnant with her son, Lucas, when her eye symptoms take a sudden turn for the worse, including debilitating headaches and double vision.

“That’s when my doctor explained how TED works—that even though my thyroid was gone, the immune malfunction that caused my Graves’ was still active in my body and was attacking my eyes.”  

Luckily, after she gave birth, the symptoms subsided, making it a bit more bearable for Layla with the help of steroids and eye drops. And her downward vision wasn’t impacted, which was very important for her career as a dentist. 

But while her ophthalmologist assured her the eye symptoms would not likely surge again even with another pregnancy, that turned out to be untrue when she became pregnant with her daughter, Nora. In fact, she says, “The first sign I had that made me suspect I might be pregnant again was that the double vision suddenly returned!” 

While her symptoms decreased again after she gave birth, they still disrupted her day-to-day life. “I didn’t enjoy going to my son’s soccer games because being outside in the sun hurt my eyes.” Not only did she hate missing out on those moments, she says, “it really opened up how I felt as a kid where people would call me lazy for staying indoors and not participating in things.”

So she went back to her doctor and asked if there was anything else she could try. And that’s when he mentioned there was a new biologic medication that had recently been approved to treat TED.

“I said sign me up!” laughs Layla.

“I couldn’t believe the difference” 

Layla started the infusions and by the third round, to her amazement, she found relief.

“I was in shock! It eased symptoms I didn’t even realize I was having, like the dry eye in the mornings, because I’d lived with them so long I thought they were normal and everyone felt that way. For the first time in 26 years, my eyes weren’t bothering me!”

That’s why Layla was dismayed when production of the drug (among others) was ceased in 2020 so manufacturers could concentrate on producing the COVID-19 vaccine. Even after it was put back on the market, she found she had to battle her insurance for continued access when her symptoms would return. 

Frustrated, Layla decided she needed to take action and became a patient advocate with the TED Community Organization to fight not just for her own access to her medication, but for other patients, too.

“I’m a healthcare provider with resources, and if this is what I have to go through to get access to this medication, I can’t imagine somebody who doesn’t have my support. That’s why I’m fighting these battles,” she says.

“Now I’m looking forward”

Today, Layla is continuing to get infusions of the medication, and is still working to help others gain access to the drug that she says “changed my whole life.”

“I’m in a good place right now. I go to my son’s soccer games, I go outside and play with my kids. It’s been so empowering—this medication has just been a game-changer.”

Here, Layla shares her top tips for conquering TED…

Find help for access. If you’re having trouble getting your insurance company to cover your medication, Layla suggests contacting patient advocacy groups like the Patient Access Network Foundation (panfoundation.org) or asking the manufacturer of the drug your doctor recommends if they have any patient liaisons. She explains these advocates are great because, “While I’m taking care of my kids, my husband and myself, this person was taking care of me and trying to get me the medication that I need!”

Communicate with your kids. Children often don’t have a filter, which means kids of people who have TED sometimes hear things about their mom or dad’s eyes at school. For her son, who is now 8, she says letting him know he doesn’t have to protect her is important. “I try to talk to him to normalize it,” she explains. “I say, ‘Mommy’s eyes sometimes pop out, and people may say things to you. If anyone makes you feel uncomfortable, just let me know, and we’ll talk it out together.”

Try tinted glasses. Layla likes wearing blue light-blocking tinted glasses indoors to help on the days when her eyes are feeling sensitive to help reduce glare. This has been an upgrade from when she used to wear sunglasses indoors! “People just thought I was trying to be cool!” she laughs.

Hear more about Layla’s journey with thyroid eye disease in her own words.

“Seek your own joy!”
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CHRISTINE GUSTAFSON

Today, Christine Gustafson is the founder of the TED Community Organization, but in 2009, she was simply a patient with both Graves’ disease and TED. And the day-to-day reality of living with bulging, swollen eyes was taking its toll.

“I was actually frightening little children!” she recalls. “I felt very isolated and alone.” In fact, it would be another 12 years before she met another patient in her shoes.

She underwent her first eye surgery to correct the bulging in 2012 and has since had six more, including decompression surgery, in which the space behind the eyes is cleared out to allow the eyes to move back. She faced complications along the way like double and even chaotic vision in which things in her line of sight would appear chopped up or out of order, but she tried to stay positive.

Luckily, her last surgery in 2022 was a success—not only are her eyes symmetrical, but she now has nearly 20/20 vision and no longer sees double. That same year she decided to pay it forward by founding the TED Community Organization to create “a one-stop place for education, support and community” after trying to help a fellow patient she met online find educational resources. “It became clear that this was a great need and something I could help with,” she explains. She says of her fellow patients, “We need each other. We seem to do better in a community!”

Here, Christine shares some of the advice she wished she’d had when first diagnosed…

Plan for discomfort. Having strategies on-hand can be a lifesaver when eye discomfort from TED hits. Christine now makes sure she always has the following stocked up in her house: “soothing eye drops, ice packs that I can put over my eyes to ease swelling, and pain medication.”  

Find support. “Embarrassment and loneliness are primary to a TED diagnosis. Connecting with the TED community is a very important way for those affected by the condition to overcome these sizable roadblocks to a solution,” she says. That’s, after all, why she started the TED Community Organization. To find out more, visit tedcommunity.org. 

Live your best life. Christine feels strongly that while TED impacts so many parts of a patient’s life, it’s important to try to find joy wherever you can. “I am very dedicated to building a good life for myself.” Calling herself “a student of self-care,” she says, “I am very active with swimming each day, bicycling and walking whenever I can. And I work quite hard at building and maintaining all kinds of relationships.”