By the time most patients are diagnosed with the rare thyroid eye disease (TED), they have seen multiple providers, struggled with debilitating symptoms and likely received a number of incorrect diagnoses.
“It can look a lot like pink eye or dry eye, so a lot of these patients are misdiagnosed unless they see an eye care professional who knows about it,” explains Andrew Harrison, MD, an ophthalmologist and oculoplastic surgeon with University of Minnesota Physicians (M Physicians).
Dr. Harrison is one of those eye care professionals, specializing in the treatment and diagnosis of TED and bringing hope and comfort to his patients.
What is TED?
TED is an autoimmune condition commonly associated with Graves’ disease. However, although TED is associated with thyroid conditions and roughly half of patients diagnosed with Graves’ disease will develop TED, it is not precisely caused by thyroid issues. TED is caused by autoantibodies attacking the tissues around the eye, resulting in symptoms like:
- Painful irritation
- Eye bulging
- Eyelid retraction, the most common symptom, which makes it difficult or even impossible to close the eye and can further exacerbate other symptoms
The disease can be painful and lead to potentially drastic and permanent changes in the appearance of the eyes, which can be deeply upsetting for patients.
“This disease runs a course where patients are in an acute inflammatory phase for about two years,” Dr. Harrison elaborates. “So then after two years, it kind of burns itself out. The thing is, after your eyes stabilize, they never quite get back to normal.”
The physical and emotional toll of TED is taxing; Dr. Harrison says research of mental health in TED patients has shown that anxiety and depression scales are equal to patients dealing with breast cancer.
“TED is very serious,” he explains. “I have a lot of people cry in the chair with this. It affects both appearance and function, and it really affects people psychologically.”
Prior to 2020, treatment for TED was much more limited. During the inflammatory stage, patients might be treated with steroids or radiation, but would generally have to wait for the inflammation to ease before surgery to repair long-term damage like bulging eyes or double vision.
Now, a new medication is available with promising results.
“It has been shown to reduce bulging in about 85% of patients, and it also helps with those inflammatory symptoms in about two-thirds of patients and double vision in 50%,” says Dr. Harrison.
As with any medication or potential treatment, it is important for patients to talk with their doctor about their options. Many factors should be taken into consideration, including cost and potential side effects.
“When I meet with patients, we have the discussion about treatment,” Dr. Harrison emphasizes. “I say, ‘Here are the risks and benefits of this new medicine,’ and we leave it up to the patient to decide.”
Looking to the Future
Having more treatment options gives patients the autonomy they deserve, and those options will only expand with time and research. However a patient with TED decides to pursue treatment, Dr. Harrison says the future is bright.
“We’re at the beginning of this disease treatment. The door is wide open now, so a lot of great companies are working on really cool and interesting drugs that potentially can be used to treat this,” states Dr. Harrison. “I’ve been saying to my patients for years that one day there’s going to be a pill you can take, and we can make this go away. We’re getting there. It’s a super exciting time for those of us that treat this disabling condition!”
Dr. Andrew Harrison is a consultant and speaker for Horizon Therapeutics, the pharmaceutical company that makes and sells the new TED medication Tepezza.