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Thyroid Eye Disease Caused by Graves': A Search for Treatment

After spending years hiding at home, this photographer shares how she finally gained relief from the painful and embarrassing symptoms caused by her Graves eye disease.

Christine Gustafson was a thriving young photographer and website designer, and swimming a mile a day as well as biking, when she began to lose weight unexpectedly. She also noticed her heart began to race, making it too hard to sleep through the night for fear that her heart might bust out of her chest.

“When you lose weight that quickly, the first thing pops into your head is cancer so I was scared,” said Ms. Gustafson. “I went to my doctor right away, and he said I needed to get my thyroid tested.” 

Ms. Gustafson enjoys her garden having gained treatment for Graves eye disease.Christine developed disabling eye pain and bulging eyes that took 6 surgeries and many years before she finally achieved relief from these symptoms of thyroid eye disease. Photo courtesy of C. Gustafson

Graves' Disease Sometimes Affects the Eyes, Too

Her thyroid blood testing confirmed what the doctor had suspected—Christine had Graves’ disease, an autoimmune disease that causes overactive thyroid function, or hyperthyroidism. Although she was prescribed medication to regulate her thyroid and restore her heart rate to normal, her doctor didn’t address the fact that her eyes were red and puffy, and looked like they were protruding out of her eye sockets.

“I did not realize that there were things I could do to help my eye symptoms until about three years into the disease,” says Christine. “Previously, I had been told that the annoying eye changes simply had to run their course. But during that time, things got much worse. “

It wasn’t until several years later that Christine sought treatment for her eyes. In addition to Graves’ disease, Christine learned that she also has

Graves’ ophthalmopathy, known more commonly as thyroid eye disease (TED), which affects women 5 to 6 times more often then in men. Thyroid eye disease is an autoimmune condition arising in about half of those with Graves’ disease; it causes the body’s immune system to attack the area behind the eye, causing the muscles and tissues to swell, causing the bulging appearance. 

When this happens, the eyes push forward, usually becoming red and inflamed, and in some cases, the muscles behind the eyes become so swollen and stiff, it leads to double vision. In rare cases, TED can lead to loss of vision due to the significant, sustained pressure on the nerve in the back of the eye, or from ulcers that develop on the front of the eye.

Strategies to Manage Symptoms Associated with TED 

There are currently no FDA-approved medications to treat TED, and Graves’ disease medications do not treat the eye symptoms. (ATA) Complex and costly surgical interventions are often the only option, and patients must wait until their TED becomes inactive to pursue this option.

These eye symptoms when arising due to Graves’ disease may last up to three years (known as the “active” phase), and then sometimes lessen or can go away but not always. And for those with recalcitrant TED, there is the risk of blindness. Unfortunately for Christine, her thyroid eye disease did not resolve on its own.

“I was just trying to live my life like everyone else, but the symptoms of TED were crazy,” she recalls. “My eyes were pushed out so much that they were almost out of their sockets. If I was in the locker room, I would never stand in front of the mirror to comb my hair because what I saw was such a shocking contrast compared to what everyone else looked like, and how I used to appear.”

Three Common Obstacles of Thyroid Eye Disease

For the next three years, she didn’t know what was wrong with her eyes, or how to make them return to looking natural again. Her top challenges during this time? She was too embarrassed to be seen in public so stayed home as much as possible due to the very obvious abnormal appearance of her eyes. Christine even avoided giving out candy on Halloween to the children in her neighborhood, for example, because she felt so self-conscious about how she looked.

Another hurdle was that she was experiencing constant physical pain that persisted because of the immune response that was attacking her eyes, which is common in TED, and enough though she was taking her medication to manage the Graves’ disease, she became despondent because the drugs were not effective in lessening the symptoms related to the thyroid eye disease. “It was incredibly frustrating,” says Christine.

“Finally, after I was diagnosed with Graves’ eye disease, I underwent a failed decompression surgery on my eyes, followed by four more operations over the course of several years to correct my eyes, none of which worked; and this was utterly demoralizing,” she says.

As if that wasn't hard enough, Christine’s biggest hurdle was not finding a doctor with the expertise to give her the help she so badly needed to feel better. That is, until one day, while she was scouring the internet looking for answers, she discovered a YouTube video of people who also had TED and were sharing their stories—many of whom had had similar struggles to what she was going through—but they also mentioned their triumphs over this painful and progressive disease.  

Learning about Others Provided the Turning Point  

“I actually started to cry when I heard others who had lived with the same symptoms as me,” she recalls. “Listening to these patients’ experiences with thyroid eye disease was so wonderful. Knowing there were people who were able to relate to what I was facing, and even better, they had gotten through this and found a successful treatment.”

The video she watched featured Raymond Douglas, MD, PhD, an oculoplastic surgeon who specializes in Grave’s eye disease surgery in order to restore their appearance to what it was before they developed the disease.

After Christine had viewed a video of Dr. Douglas discussing his surgical technique and the success he has had at restoring the appearance of patients to what they looked like before the thyroid eye disease struck, she decided to travel to Los Angeles to meet with him.

“Think of the eye as ice cream and the eye socket as the ice cream cone,” Dr. Douglas explains. “As the eye begins to pushed out, it’s as if the ice cream gets bigger and has nowhere to go except to bulge out of the cone. In a decompression surgery, I make the ‘cone’ bigger to give the ice cream more room to fit properly.”

“He explained that the surgery, called orbital decompression surgery, could relieve the pressure behind the eyes, correct the eye bulging (proptosis), and improve symptoms like dryness, light sensitivity, and distorted vision,” she says.

The surgery, which is sometimes done in several stages, improves both the appearance and the function of the eye. It would also, he told her, help her to regain her self-esteem so she could overcome the hesitation to be seen in public again.

Dr. Douglas remembers that when he first saw Christine, she couldn’t close her eyes easily and was very physically uncomfortable. “But she was a real advocate for herself, trying to understand  more about her condition and what options she should pursue, given her disappointing results to date,” he recalls.

Ultimately, she opted to have a sixth surgery, performed by Dr. Douglas. In this procedure, he made tiny incisions in her eye sockets to create some space behind the eyes so they could rest back in the socket, achieving a more natural appearance. While she was still healing, yet only six weeks after the surgery, Christine says her eyes looked normal again. She still has some pain in her eyes related to the swelling, but will improve, Dr. Douglas told her, reassuringly.

Despite all the obstacles, unceasing discomfort, and disappointing operations, Christine is now back at work. She has managed to maintain her business throughout her medical difficulties, and she kept on biking and swimming, but she’s finally feels more herself after far too long. 

“I feel like Indiana Jones where, after a huge fight, he walks out the other side and dusts himself off,” she says. “After having all of this thrown at me and trying to cope, I’m brushing myself off right now, and focusing on building my business, and nurturing my marriage. When you have something as precious as your life, you don’t want to be robbed of it.”

Recover Quicker with Support from Other Patients with TED 

Her advice for others who have Graves’ disease or TED is to educate yourself by checking out all the resources that are available to you and to seek out support from other individuals with this autoimmune disease. She recently joined oneGRAVESvoice, an online community for those with Graves’ disease and thyroid eye disease, which she encourages others to do.

“TED is a pretty lonely disease to have,” Christine says. “So, it is especially beneficial to reach out to other people who have been through it so you can figure out the best way to get the right medical care sooner.”

If you are experiencing symptoms such as bulging eyes, swelling in your upper eyelids, dry or watery eyes, pain in or behind the eyes, and a sense that you have to strain to move your eyes, Dr. Douglas recommends getting in touch with your healthcare provider to discuss a treatment plan. 

“TED can occur in everyone—from young children to very senior individuals,” he says, “and women have a slightly higher risk of developing thyroid eye disease than do men. If you have Graves’ disease and then develop TED, discuss who can help you manage this disease best so you can receive relief as soon as possible.”  

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