Is Your Thyroid Eye Disease Being Monitored Correctly?

Thyroid eye disease (TED) can change over time, and the schedule for follow-up visits with your doctor that makes sense while inflammation is active may look very different months or years later, once symptoms have settled and the disease is stable. During the active phase of the disease, visits are usually closer together, while stable chronic TED may eventually require only routine eye care.

Good monitoring also doesn’t mean getting every possible eye test or scan at every visit. Some checks are routine and should happen every visit, while others are used only when your doctor is concerned about a specific problem.

Knowing what to expect can help you understand whether your eyes, vision, and thyroid function are being followed closely enough, and when to ask your doctor if additional tests are needed.

TED is generally described in two phases, active and chronic.

In the active phase, inflammation is driving changes in the muscles, fat, and other tissues around the eyes. “Symptoms may include eyelid retraction, bulging eyes, bags under the eyes, pain in the eye, redness, dry eye, pressure around the eye, and changes to vision, usually double vision,” says Usiwoma Abugo, MD, a clinical spokesperson for the American Academy of Ophthalmology and an ophthalmologist with Katzen Eye Group in Maryland.

“If it’s my first time meeting someone and they’re either newly diagnosed or active, my typical follow-up would be about three months,” says Fatemeh Rajaii, MD, PhD, an associate professor of ophthalmology at the Wilmer Eye Institute at Johns Hopkins Medicine in Baltimore.

For newly diagnosed but mild TED, she may schedule a return visit further out and then space visits farther apart if the disease remains stable.

“You will have your visual acuity (how clearly you can see), eye pressures, eye movements, and your pupils checked at every visit to the ophthalmologist,” Rajaii says.

• Color Vision Rajaii usually checks this at least once to establish a baseline. Changes in color perception can be an important sign of optic nerve problems.
• Eye Bulging An exophthalmometer measures how far each eye protrudes so changes in proptosis, or bulging, can be tracked.
• Eyelid Position and Closure Your doctor may measure the eyelids and check whether they close completely, since incomplete closure can expose the surface of the eye.
• Redness, Swelling, and the Eye Surface A slit-lamp exam gives your doctor a close look at inflammation and the front surface of the eye.

More specialized vision testing isn’t necessarily part of every visit, but may depend on symptoms. “For example, if the patient’s vision gets worse, I would dilate [their pupils],” says Rajaii.

“There are other tests like visual field testing and OCT of the optic nerve or macula, which may be done if we are worried about optic nerve involvement,” she says. OCT, or optical coherence tomography, is a scan that can help assess the optic nerve and retina.

The goal for thyroid function is that patients should try to be euthyroid, meaning thyroid hormone levels are in the normal range, says Rajaii. “In general, the monitoring of the thyroid is done by either a primary care doctor or an endocrinologist,” she says.

Thyroid eye disease often occurs in people with Graves’ disease, the most common cause of hyperthyroidism.

Blood tests may include thyroid-stimulating hormone (TSH) and thyroid hormones such as T4 and T3. How often they’re checked is determined by the clinician managing your thyroid condition.

That information should also make its way to the doctor monitoring your eyes, says Esra Karslioglu French, MD, a clinical associate professor of medicine in the division of endocrinology and metabolism at the University of Pittsburgh School of Medicine.

“Key details such as your thyroid status, CAS score, risk factors, and planned treatments should be shared between your endocrinologist and ophthalmologist rather than relying on you to relay everything between appointments,” says Dr. French.

“If someone has a history of thyroid eye disease but hasn’t been active for a while and doesn’t really have any symptoms, I would recommend a follow-up visit in a year or even no follow-up, and discharging them to their regular eye doctor,” Rajaii says.

Chronic TED doesn’t always mean the eyes return to how they were before. “Symptoms can still include eyelid retraction, double vision, and bulging eyes,” says Dr. Abugo.

If those changes are stable and you aren’t pursuing additional treatment, a regular ophthalmologist or optometrist can often handle ongoing eye care, with a return to a TED specialist if something changes, says Dr. Rajaii.

• Persistent or Worsening Vision Changes, Including Blurring, Dimming, or Colors That Suddenly Look Washed Out Between visits, Rajaii advises people with active TED to cover one eye and then the other every few days and compare how clearly each eye sees and whether lights or colors look dimmer on one side. Fluctuating blur can happen with dry eye, but if your usual dry-eye treatment doesn’t clear it, contact your doctor, she says. Sudden or significant vision loss warrants urgent ophthalmologic evaluation. Don’t wait for a routine appointment.
• New or Worsening Double Vision
• New or Worsening Aching Pain Behind the Eye, Especially With Eye Movement Orbital aching and increasing restriction of eye movement can be warning signs of more serious TED.
• Increasing Difficulty Closing Your Eyelids, Particularly if the Eye Becomes Very Dry or Painful Incomplete closure can expose and damage the cornea.
• Persistent New Redness or Swelling “It could be the thyroid eye disease getting worse,” Rajaii says, so a significant change that isn’t improving should be checked.