Elizabeth DuPont Spencer is a cognitive behavioral therapist, and her eyes are a vital tool during her therapy sessions. “My face is very important to my work because I’m communicating emotions. I need to be able to reflect what I’m hearing from my clients,” says Spencer, who specializes in anxiety and obsessive-compulsive disorders and has been in practice in Rockville, Maryland, for 30 years.
So, a decade ago, when Spencer began to experience disturbing symptoms in both eyes, it affected not only her quality of life but also her work. Her eyes watered constantly, making it appear like she was tearing up, and they began to bulge, so she didn’t look like herself. She also had double vision, which meant she couldn’t focus on both her clients and her notes at the same time.
“It had a tremendous impact on me,” she says.
For about five years, Spencer was treated by an ophthalmologist who said that the watering in her eyes was a normal part of aging. This ophthalmologist diagnosed her with thyroid eye disease (TED) after she developed double vision, but he said there was no treatment for the disease other than prescribing prisms for both lenses in her glasses to help correct her vision. But because these symptoms were getting worse, Spencer’s mother recommended she visit the Wilmer Eye Institute for a second opinion. In 2017, Spencer met Nicholas Mahoney, M.D., chief of the Oculoplastics Division and an associate professor of ophthalmology, and Courtney Lynn Kraus, M.D., assistant professor of ophthalmology, who have provided her care for the last five years.
Now largely on the other side of her treatment for thyroid eye disease, which included taking a brand-new medication that alleviated the worst of her symptoms, she says, “I want other people to be encouraged that they can get better from this.”
Thyroid eye disease is an autoimmune disorder in which some antibodies that normally help the body identify and fight infection mistakenly attack a receptor in the eye socket, or orbit. The resulting reaction can cause the fatty tissues or muscles in the socket to enlarge, which can make the eyes bulge or cross and lead to disfigurement and/or double vision.
“We know that many patients have a worsening of this inflammatory phase in their eye socket for a period of one to two years,” Mahoney says. “Once we see that a patient has made it through the worst of the disease progression, then we can correct what’s left behind with surgery.”
But in March 2020, a new medication called Tepezza came on the market that had also been shown to address some of these symptoms. Tepezza is administered through infusion in eight doses given three weeks apart. After the first two infusions, Spencer saw a profound difference in her symptoms. “My eyes weren’t pushed forward in my head, they weren’t crying any longer, and I didn’t have double vision anymore,” she says. “The change was unbelievable.”
Mahoney notes that about 70% of patients see a durable improvement in symptoms after taking Tepezza. “We’ve never had a medicine that’s been able to do that in the past,” he says. Many of these patients will still need surgery, which is performed in three stages. But using the medication as part of a treatment plan beforehand can reduce the amount of work needed at each stage.
For example, during decompression surgery, the first and most complex stage, Mahoney works to remove parts of the bony walls of the eye socket to make space for the enlarged fatty tissues and muscles and to reduce the bulging of the eyes. There are three walls that Mahoney can operate on, and working on more walls leads to a greater reduction in bulging. However, this also increases the risk of complications. Patients who have taken the medication first could have already achieved some reduction in bulging, which could mean Mahoney only has to work on one of the bones within the walls and can pick the safer place to operate.
“The medicine does half the job, so we don’t need to take as much risk during surgery,” he says.
Today, Spencer has only grateful words for Mahoney, Kraus and the team at Wilmer. “From the beginning, they were so lovely to me and knowledgeable,” she says. “I’m not sure I could say enough good things about any of them.”