Facts and Tips from Experts in the Field

Thyroid eye disease, or Graves' ophthalmopathy, can not only leave patients with bulging eyes and inflammation, it can affect their vision and overall quality of life. We asked doctors who treat thyroid eye disease what information they wish every patient knew about their treatment, care and future health, including how to prevent vision loss.

1. “It’s important to quit smoking.”

If you have Graves’ disease, one of the most important things you can do is quit smoking. “We tell every patient with Graves’ disease, whether or not they have any signs of thyroid eye disease, to quit smoking (if they do smoke) and/or stay away from smoke of all kinds,” says Emma McDonnell, MD, Oculoplastic and Reconstructive Surgery Fellow at Johns Hopkins Wilmer Eye Institute. “Smoke exposure is associated with significantly worse thyroid eye disease.”

2. “Stress can contribute to flare-ups.”

“There is increasing evidence that stress causes worsening of thyroid eye disease,” according to Constance L. Fry, MD, Professor and Medical Director, MARC Ophthalmology and Chief, Ophthalmic Plastic Surgery/Oncology at the University of Texas Health Science Center at San Antonio. “Therefore, it is important to moderate and decrease stress in the manner that works best for each patient.”

3. “It’s more common in women, but more severe for men.”

Thyroid eye disease is between 6 to 8 times more common in women, but if a man has the disease, it’s more likely to be severe and can lead to vision loss. “If you notice changes—even if it’s a change in appearance, which can be written off as ‘cosmetic’—it’s important to establish care with an ophthalmologist,” notes McDonnell.

young woman applying medicine or saline drops in her eyes

4. “Dry tears and ointment can help.”

Most patients with thyroid eye disease experience dryness, so using preservative-free artificial tears during the day and tear ointment at night can help. “Some patients will notice that the eyes are open when they sleep,” says Fry. “Those patients should definitely use lubricating ointment at night and see an eye care provider.”

doctor checking senior female Caucasian patient's eye health

5. “The bug-eyed look is not a cosmetic issue.”

The most common thing patients complain of, in terms of appearance, is that they look “startled” or “bug-eyed,” says McDonnell. This is due to the eyelids being more open (called retraction) or the eyes not having enough room if the muscles and fat around them are enlarged, which pushes the eye forward. “Many of our patients have difficulty closing their eyes completely,” she notes. “Some people may assume this is “cosmetic;” however, it can cause significant dryness of the cornea, which affects vision and quality of life. Constantly using artificial tears or ointment is burdensome. And eyes in asymmetric positions can worsen double vision.

Brazil nuts, a good source of selenium, in wooden bowl on wood textured background

6. “Consider taking a selenium supplement.”

People with Graves’ disease should consider taking selenium supplementation, says McDonnell (if it isn’t already in a multivitamin the person takes). “Selenium may help prevent or decrease the severity of thyroid eye disease,” she notes. Talk to your doctor about ways to get more selenium in your diet, including selenium-rich foods, such as brazil nuts, tuna and shrimp.

7. “Know which symptoms require immediate care.”

The most common symptoms of thyroid eye disease are mild blurred vision, dry eyes and fullness of the tissues around the eyes. “Many patients will experience the eyelids opening too widely; this creates the classic thyroid eye disease appearance of staring, which will contribute to the dry eyes,” notes Fry. “Only 15% of patients have serious side effects, such as double vision, severe protrusion of the eyes, or vision loss. Anyone experiencing these symptoms should see an eye care provider promptly.”

8. “Controlling thyroid hormone levels doesn’t mean your eyes are safe.”

Thyroid eye disease is related to fluctuation of thyroid hormone levels. Working with your endocrinologist to get these under control is good for your health, but it doesn’t mean your eyes are safe,” says McDonnell. “We see patients who have normal hormone levels but with antibodies against their thyroid, and people whose hormone levels have been normal for years but then exhibit symptoms. Additionally, radioactive iodine treatment can actually worsen thyroid eye disease, so if patients undergo treatment, they should be extra vigilant to vision changes.”

close up shot of young woman rubbing her eye with one hand outdoors

9. “Let the disease run its course before considering surgery.”

“Once it’s clear that eyesight isn’t threatened, we want to help patients return to looking as much like themselves as possible, and help with the discomfort of dryness or a tight feeling of the eyes, McDonnell explains. “The external changes that occur can vary over months or even years, which can be frustrating for patients who want to look like themselves. We like to make sure the disease has run its course before considering reconstructive surgery in order to have the best chances of success. It also may mean having to live with double vision or severely dry eyes, which is very difficult.”

10. “If you have any vision changes, don’t wait for a scheduled appointment.”

If patients note a change in their vision, they should see a doctor immediately to be evaluated, says McDonnell. “The most common reason for vision loss is optic nerve compression caused by enlarged muscles,” she notes. “If the patient thinks there is a problem, they should never wait until a scheduled appointment. It can be loss of central vision; peripheral vision (causing issues such as difficulty seeing other cars in the mirrors when driving); or worsening of, or new complaints of, double vision. Treatment options include IV steroids, surgery to remove bone and fat, radiation, or a combination of those things.”

Thyroid Eye Disease: 10 Things Doctors Want You to Know

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