Thyroid Eye Disease - Active Treatment and Rehabilitation Guide

Thyroid eye disease (TED)—also called Graves' ophthalmopathy or thyroid-associated orbitopathy—can be one of the most challenging aspects of thyroid problems. If you're dealing with bulging eyes, double vision, or eye discomfort from TED, this guide will help you understand your condition and navigate the path from active disease through rehabilitation.

Understanding Thyroid Eye Disease

TED occurs when your immune system attacks tissues around the eyes. The muscles and fat behind the eyes become inflamed and enlarged, causing:

• Bulging eyes (proptosis)
• Double vision (diplopia)
• Eye redness and swelling
• Tearing and grittiness
• Pressure or pain behind the eyes
• Difficulty closing the eyes completely
• In severe cases, vision loss from optic nerve compression

Who Gets TED?

TED is most commonly associated with Graves' disease (hyperthyroidism) but can also occur with:

• Hashimoto's thyroiditis (hypothyroidism)
• Normal thyroid function (rarely)

It's more common in women, but men tend to have more severe disease.

The Two Phases of TED

Understanding which phase you're in guides treatment:

Active Phase (1-3 years)

• Immune system actively attacking eye tissues
• Symptoms may worsen or fluctuate
• Inflammation present
• Medical treatment can modify the disease
• Surgery is avoided (except emergencies)

Stable Phase (Inactive)

• Inflammation has burned out
• Symptoms no longer progressing
• Changes from active phase persist
• Surgical rehabilitation can be performed

Assessment and Monitoring

What Your Doctor Evaluates

Proptosis Measurement

• How far the eyes protrude forward
• Measured with an exophthalmometer
• Tracked over time

Eye Movement and Alignment

• Looking for double vision
• Measuring misalignment
• Assessing muscle restriction

Eyelid Position

• Eyelid retraction (upper lid too high)
• Inability to close eyes completely
• Lid swelling

Corneal Health

• Exposure from incomplete closure
• Dryness and irritation

Optic Nerve Function

• Color vision
• Visual field
• Pupil responses
• Vision loss suggests compression

Imaging

CT or MRI of Orbits

• Shows enlarged eye muscles
• Evaluates optic nerve crowding
• Helps plan surgery if needed

Smoking: The Critical Factor

Resources for Quitting

• Talk to your doctor about smoking cessation aids
• National quitline: 1-800-QUIT-NOW
• Medications (nicotine replacement, varenicline) significantly improve success
• Even reducing smoking helps, though stopping completely is best

Treatment During Active Phase

The goal in active TED is to control inflammation and prevent permanent damage.

Selenium Supplementation

Selenium (100 mcg twice daily) has been shown in European studies to:

• Improve mild active TED
• Slow progression
• Have few side effects

It's inexpensive and often recommended early in disease.

Steroids

For moderate-to-severe active TED:

IV Steroids (Methylprednisolone)

• Given weekly or in pulses
• More effective and safer than oral steroids for TED
• 12-week courses are common

Oral Steroids

• Sometimes used but less preferred
• Higher side effect profile

Teprotumumab (Tepezza)

Teprotumumab is a game-changing treatment for TED:

How it works:

• Targets IGF-1 receptor on orbital cells
• Reduces inflammation and tissue expansion
• Given as IV infusion every 3 weeks for 8 doses

Benefits:

• Reduces proptosis (eye bulging)
• Improves double vision
• Decreases inflammatory symptoms
• Can prevent need for surgery

Considerations:

• Expensive (specialty pharmacy/insurance coordination needed)
• Side effects include muscle spasms, nausea, hearing changes
• Not suitable for everyone (discuss contraindications)
• Best in active disease

Radiation Therapy

Orbital radiotherapy may help selected patients:

• Moderate disease not responding to steroids alone
• Often combined with steroids
• Takes weeks to show benefit

Managing Specific Symptoms

For Dry, Irritated Eyes

• Preservative-free artificial tears frequently
• Lubricating ointment at night
• Moisture chamber glasses
• Humidifiers
• Taping lids at night if they don't close

For Exposure

• Eye protection outdoors (sunglasses, wrap-arounds)
• Avoid wind and dry environments
• Elevate head of bed to reduce morning swelling

For Double Vision

• Fresnel prisms on glasses (temporary)
• Patching one eye
• Permanent prisms once stable

The Surgical Rehabilitation Pathway

Surgery for TED is performed after the disease has been stable for at least 6 months. Procedures follow a specific order because each step affects the next.

Step 1: Orbital Decompression

Purpose: Reduce proptosis and relieve pressure on the optic nerve

What it involves:

• Removing bone and/or fat from the eye socket
• Creates more room for enlarged tissues
• Eyes move back into a more normal position

When it's done:

• First surgical step if needed
• Emergency decompression for optic nerve compression (even in active phase)
• Elective for appearance and comfort after stable

Step 2: Strabismus Surgery

Purpose: Correct double vision from scarred, restricted muscles

What it involves:

• Adjusting the position of eye muscles
• May be performed on one or both eyes
• Often requires adjustable sutures

When it's done:

• After orbital decompression (which can change alignment)
• Once misalignment is stable

Step 3: Eyelid Surgery

Purpose: Correct lid retraction and improve appearance

What it involves:

• Lowering the upper eyelid
• Adjusting the lower eyelid
• Removing excess tissue if needed

When it's done:

• Last in the sequence
• After eye position and alignment are addressed

Long-Term Management

Thyroid Control

• Stable thyroid levels help stabilize TED
• Work closely with your endocrinologist
• Both over- and under-treatment can worsen TED
• Radioactive iodine treatment may temporarily worsen TED (steroid cover often used)

Ongoing Eye Care

• Regular monitoring even after TED stabilizes
• Watch for late progression (uncommon)
• Manage chronic dry eye
• Protect eyes from sun and wind

Emotional Support

TED affects appearance and quality of life. It's normal to feel:

• Self-conscious about changed appearance
• Frustrated by prolonged treatment course
• Anxious about outcomes

What helps:

• Support groups (online TED communities exist)
• Counseling if needed
• Education about expected outcomes
• Open communication with your care team

Frequently Asked Questions

Will my eyes go back to normal?

Many patients achieve significant improvement with treatment. Teprotumumab can substantially reduce bulging. Surgical rehabilitation can address remaining changes. While some patients return to near-normal appearance, others have persistent changes. Setting realistic expectations with your doctor is important.

How long does TED last?

The active phase typically lasts 1-3 years before burning out. Treatment can shorten and moderate this phase. The stable phase is permanent, but surgery can address the remaining changes.

Can TED come back after it's stable?

Reactivation can occur but is uncommon. Smoking and radioactive iodine treatment increase the risk. New or worsening symptoms should be reported to your doctor promptly.

Do I need to see multiple doctors?

Usually, yes. TED care often involves:

• Endocrinologist (thyroid management)
• Neuro-ophthalmologist or ophthalmologist (eye monitoring)
• Oculoplastic surgeon (surgical rehabilitation)

These specialists coordinate to provide comprehensive care.

Is teprotumumab right for me?

Teprotumumab is most effective in active TED. It's expensive and may have side effects. Good candidates have moderate-to-severe active disease. Your doctor can help determine if it's appropriate for your situation.

What if I can't afford teprotumumab?

Manufacturer assistance programs exist. Your doctor can explore alternatives, including steroids and radiation. Clinical trials may be available. Don't delay seeking care because of cost concerns.

Can TED cause blindness?

In severe cases, enlarged muscles can compress the optic nerve, threatening vision. This is called dysthyroid optic neuropathy (DON) and is a medical emergency requiring urgent treatment (steroids and often decompression surgery). With proper monitoring, DON can usually be detected and treated early.

When can I have surgery?

Elective surgery is performed after TED has been stable for at least 6 months. This waiting period ensures the disease won't reactivate and change surgical results. Emergency decompression for optic nerve compression may be needed during active disease.

Will I always have double vision?

Many patients' double vision improves with treatment of active disease and can be further corrected with prisms or strabismus surgery. Complete elimination of double vision isn't always possible, but significant improvement is common.

References