Warning Signs and Treatment for Thyroid Eye Disease

Historically, there have been few treatment options for patients with active thyroid eye disease (TED), but new research and clinical trials are revealing a new horizon for managing the rare autoimmune disease that causes tissue behind the eye to become inflamed.

“For a long time, many patients with TED went unrecognized because, outside of surgery, there weren’t a lot of treatments,” says Prem Subramanian, MD, PhD, professor of ophthalmology and Clifford R. and Janice N. Endowed Chair in Ophthalmology at the University of Colorado School of Medicine. “Now, there’s more awareness around diagnosis, and we’re learning and developing more treatments for patients.”

Subramanian, a TED specialist at the Sue Anschutz-Rodgers Eye Center, explains who’s at risk for the disease, symptoms, and the latest on how ophthalmologists diagnose and treat the disease.

“It’s important for patients who think that they might be developing signs and symptoms to go and see an ophthalmologist to determine a proper diagnosis, and to potentially talk about treatment that can help improve their quality of life,” he says.

Who is at risk for thyroid eye disease?

This disease tends to cluster in two age groups: people from about 24 to 45 years old and people aged 55 to 70. In general, women are more likely to get TED, but men on average experience more severe disease. While most people who get thyroid eye disease also have some degree of systemic thyroid disease, usually hyperthyroidism like Graves’ disease, at least 20% of patients with thyroid eye disease develop eye symptoms first or never develop a systemic thyroid problem.

What warning signs should people be aware of? What are the first symptoms?

One common characteristic is eyelid retraction. It may happen only on one side and when it does that, people usually think their other eyelid is droopy, but it’s not. People with TED may also develop persistently red eyes and puffiness or swelling around the eyes. They may also develop a new achiness behind the eyes along with a non-specific pain. Eye prominence, or proptosis, is a typical finding as well.

Is it possible that vision can be affected?

It absolutely can be. Fortunately, it's not the most common symptom, but patients can experience double vision.

When the disease gets severe, a person may lose vision due to compressive optic neuropathy; or because the eye doesn’t close properly because of eyelid retraction, there can be corneal exposure, which can also cause decreased vision.

What’s the process for diagnosis and what are you checking as an ophthalmologist?

I’m checking a patient’s vision, eyelid position, and eye pressure, because that can increase if the eye socket (orbit) gets congested. I’m looking to see whether there is swelling on the surface of the eye. Visual field tests may help determine whether there is any impact to the optic nerve.

I’m also looking at the prominence of the eyes. There's a certain degree to which everyone's eyes protrude from the eye socket, but if their eyes are outside the normal range, it could be concerning. In addition to those exams, I’m ordering blood tests that look for antibodies in the blood that are associated with thyroid eye disease.

What treatments are available and is there a cure?

There is currently no cure for TED, but we can manage the disease. Treatment varies depending on the how long the patient has had the disease and how severe it is. If they have mild manifestations and they're not too bothered by their daily activities, then we may just do conservative treatment with lubricating eyedrops and keeping the eyes moist, maybe even putting cool compresses on the eyes.

If there's any swelling, raising the head of the bed when they sleep can help. There are also medical therapies with steroids or with radiation that may help to alleviate some of the symptoms that occur in TED. Currently, there are several drugs in development that will hopefully come to market over the next several years, and they’re going to create more opportunities and more options for patients.

If the disease is severe or vision is threatened, we may opt for surgery because we can decompress the eye socket or decompress the optic canal to protect vision.

What lifestyle changes are recommended for people with TED?

A recent survey of doctors and patients showed that both groups recognize that TED has a negative effect on a patient’s mental health and sense of wellness, so it’s important to discuss feelings of depression or anxiety with an eye care provider. Likewise, it’s important for doctors to ask patients about mental wellness, as people with TED may be unlikely to report these concerns unless asked.

Not smoking is a very important piece of the equation, too. Smoking can increase your risk of the disease getting worse by about seven or eight times, and it can contribute to therapy resistance. Additionally, some new research is showing that maintaining a good vitamin D level may be helpful.

Finally, as with many autoimmune diseases, minimizing stress and minimizing oxidative stress exposure, such as smoke and damaging chemicals, is a reasonable approach as well.