Active vs. Chronic Thyroid Eye Disease: Understanding These Different Phases

Thyroid eye disease (TED), or Graves’ eye disease, can affect how your eyes feel, how well you see, and sometimes how you look.

TED has two phases.

• Phase 1, the active inflammatory phase, when inflammation is driving symptoms
• Phase 2, the chronic or inactive phase, when inflammation has settled down but eye changes may remain

Even so, understanding the phases of TED can help you navigate the disease, including what symptoms to expect, which treatments may help, and when surgery may be considered.

The Active Phase of Thyroid Eye Disease

During this time, symptoms may come and go, and they can range from mild irritation to more serious vision problems.

What Is Happening in Your Eyes and Body

Common Symptoms

Active TED symptoms may include:

• Eyelid retraction, which can make the eyes look more open or startled
• Bulging eyes
• Bags or swelling under the eyes
• Eye pain or pressure
• Redness
• Dry eye or watering
• Light sensitivity
• Trouble moving the eyes
• Double vision

Symptoms usually affect both eyes, though some people notice symptoms more in one eye than the other.

Treatment Goals

“Treatment for this phase of TED focuses on reducing inflammation and addressing uncomfortable symptoms,” says Usiwoma Abugo, MD, the director of oculofacial plastic and reconstructive surgery and aesthetics for Katzen Eye Group, in Maryland, and a spokesperson for the American Academy of Ophthalmology.

Treatment Options

Treatment depends on how active and severe TED is. Options may include:

• Eye drops, artificial tears, or lubricating ointment to help dryness, redness, irritation, or exposure symptoms
• Steroid medication such as prednisone or IV corticosteroids to bring down inflammation when symptoms are more severe
• Teprotumumab (Tepezza), a biologic medication that became the first drug specifically approved to treat TED
• Thyroid medication, such as methimazole (Tapazole) or propylthiouracil (PTU), if Graves’ disease is causing high thyroid hormone levels
• Radiation therapy to reduce inflammation behind the eyes

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• Cold compresses to help with swelling or discomfort
• Prism glasses or other vision aids to help with double vision

Healthy habits can also support treatment. Dr. Abugo recommends quitting smoking, reducing stress, and getting regular exercise when it’s safe and appropriate.

The Chronic Phase of Thyroid Eye Disease

What Is Happening in Your Eyes and Body

By the chronic phase, inflammation may be lower, but the tissues around the eyes may not return completely to their former shape. Scarring or lasting tissue changes can leave the eyes protruding, the eyelids pulled back, or the eye muscles restricted.

Common Symptoms

The symptoms that often remain in the chronic phase include eyelid retraction, bulging eyes, and double vision, says Abugo.

Treatment Goals

In the chronic phase, treatment often shifts from calming inflammation to improving function, comfort, vision, and appearance.

“If lifestyle changes and medication are not helping, your ophthalmologist may recommend surgery,” says Abugo.

Surgical Options

Surgery is usually considered after the condition has stabilized, when it’s easier to see which changes are likely to be lasting.

The goal of surgery is to reposition the eye or the muscles of the eye, which will help relieve eyelid retraction, improve vision and bulging eyes, push the eye back into a more normal position, and relieve any pressure on the optic nerve, says Abugo.

• Orbital Decompression Surgery This creates more room in the eye socket, which can reduce bulging and relieve pressure on the optic nerve.
• Eye Muscle Surgery This may help if scarring or muscle changes are limiting eye movement or causing double vision.
• Eyelid Surgery This can reposition the eyelids to improve comfort, appearance, and eye protection.
• Additional Oculoplastic Surgery This can address soft tissue or cosmetic changes around the eyes not handled in other surgeries.

Coping Strategies

TED can impact quality of life and well-being beyond eye symptoms.

“Several studies have shown that thyroid eye disease can have profound emotional, psychological, and social effects on those who have the disease,” says Abugo.

She recommends the following strategies.

Work closely with an eye specialist. TED can change over time, so regular follow-up helps your team monitor inflammation, vision changes, eye movement, and treatment options.

Ask questions at each stage. Learn about your options and don’t be shy about asking what might help now, what may need to wait, and what signs or symptoms should prompt a call to your medical practitioner.

Bring someone to appointments. A supportive family member or friend can help you remember information, ask questions, and feel less alone during decision-making.

Consider psychotherapy if TED is affecting your mood or quality of life. “Don’t hesitate to ask your doctor to provide recommendations for emotional or psychological counseling if thyroid eye disease is affecting those important aspects of your quality of life,” says Abugo.

Seek support from others living with TED. Some people benefit from support groups with others dealing with the same condition. The TED Community Organization is one place to look for connection and support.