Thyroid Eye Disease (Graves' Orbitopathy)

Thyroid eye disease (TED), also called Graves' orbitopathy or thyroid-associated orbitopathy, is an autoimmune inflammatory condition affecting the eyes. It usually occurs in people with Graves' disease (hyperthyroidism) but can occur with other thyroid conditions or even normal thyroid function.

Understanding Thyroid Eye Disease

In TED, antibodies that attack the thyroid also attack tissues around the eyes. This causes:

• Swelling of eye muscles and fat behind the eye
• Eyes pushed forward (proptosis)
• Eyelids retracted (pulled back)
• Restricted eye movement causing double vision

Phases of TED

Active Phase

• Inflammatory changes occurring
• Symptoms may be progressing or fluctuating
• Eyes may be red, puffy, uncomfortable
• Duration: typically 1-3 years (sometimes longer in smokers)
• This is when anti-inflammatory treatment is most effective

Stable Phase

• Inflammation has "burned out"
• Changes stabilized but may have permanent effects
• No longer actively progressing
• Surgical rehabilitation can be considered

Symptoms

Appearance Changes

• Proptosis (bulging eyes)
• Eyelid retraction—upper lid pulled up, showing white above iris ("stare")
• Lid lag—lid lags behind when looking down
• Periorbital swelling—puffy eyelids

Discomfort

• Dry, gritty eyes (exposure from incomplete lid closure)
• Tearing
• Pressure or pain behind eyes
• Light sensitivity
• Red, inflamed appearance

Double Vision

• From swelling and scarring of eye muscles
• Often worse in certain directions
• Can significantly impact quality of life

Vision-Threatening Disease

Risk Factors

Major Risk Factor: Smoking

• Smoking is the most modifiable risk factor
• Smokers have worse disease
• Longer active phase
• Poorer response to treatment
• Quitting smoking is essential

Other Factors

• Radioactive iodine treatment—may worsen TED; steroids may prevent
• Poorly controlled thyroid levels—both high and low
• Female sex—more common in women
• Genetics—family history increases risk

Diagnosis

Clinical Evaluation

• Eye appearance assessment
• Eyelid measurements
• Proptosis measurement (exophthalmometry)
• Eye movement assessment
• Visual acuity and color vision
• Pupil examination
• Optic nerve assessment

Thyroid Tests

• TSH, free T4
• Thyroid antibodies (TSI, TPO, TRAb)
• May have TED with normal thyroid function (euthyroid Graves')

Imaging

• CT or MRI of orbits
• Shows enlarged eye muscles
• Evaluates optic nerve compression
• Helps planning for surgery

Assessing Activity

• Clinical Activity Score (CAS)
• Helps determine if disease is active or stable
• Guides treatment decisions

Treatment

For All Patients

• Stop smoking—absolutely essential
• Control thyroid levels—maintain euthyroid state
• Lubricating drops and ointment—for surface dryness
• Elevate head of bed—reduces morning swelling
• Selenium supplementation—may help mild disease
• Sun protection—sunglasses, avoid wind

For Active, Moderate-Severe Disease

Teprotumumab (Tepezza)

• FDA-approved for thyroid eye disease
• Reduces proptosis and inflammation
• Given as IV infusion every 3 weeks (8 doses)
• Can cause hearing changes, muscle cramps, hyperglycemia

Corticosteroids

• IV methylprednisolone often used
• Reduces inflammation
• Has significant side effects with long-term use

Orbital radiation

• Sometimes used for muscle involvement
• Combined with steroids

For Stable Disease (Surgical Rehabilitation)

Surgery is done in a specific sequence:

1. Orbital decompression—removes bone to reduce proptosis
2. Strabismus surgery—realigns eyes for double vision
3. Eyelid surgery—corrects retraction and appearance

For Sight-Threatening Disease

Dysthyroid optic neuropathy requires urgent treatment:

• High-dose IV steroids
• May need urgent orbital decompression
• Close monitoring of vision

Living with Thyroid Eye Disease

For comprehensive guidance on managing TED—from understanding active vs. stable phases, teprotumumab treatment, smoking cessation, and the surgical rehabilitation pathway—see our complete patient guide: Thyroid Eye Disease - Active Treatment and Rehabilitation Guide.

During Active Phase

• Don't smoke
• Keep thyroid levels stable
• Use lubricating drops frequently
• Sleep with head elevated
• Protect eyes from wind and sun
• Take photos to track changes

Long-Term

• Regular follow-up even after stabilization
• May need ongoing lubrication
• Possible need for surgery
• Monitor thyroid function

Frequently Asked Questions

Can thyroid eye disease occur with normal thyroid levels?

Yes. About 10% of people with TED have normal thyroid function (euthyroid Graves'). The antibodies causing eye disease are related to but not the same as those causing thyroid dysfunction.

Why is quitting smoking so important?

Smoking dramatically worsens thyroid eye disease. Smokers have more severe disease, longer active phase, and respond less well to treatment. Quitting is the single most important thing you can do.

Will my eyes go back to normal?

Some changes (like proptosis and eyelid retraction) may persist after the active phase. However, treatment during the active phase and surgical rehabilitation after stabilization can significantly improve appearance and function.

When can I have surgery?

Most surgery is done during the stable phase (typically after the disease has been stable for 6 months). However, urgent orbital decompression may be needed during active phase if vision is threatened.

Is teprotumumab (Tepezza) right for me?

Teprotumumab is most effective during the active phase. It can significantly reduce proptosis. Your doctor will consider your disease activity, overall health, and insurance coverage to help decide if it's appropriate.

Can thyroid eye disease come back?

Reactivation can occur, especially if thyroid levels become uncontrolled or with certain triggers. Long-term monitoring is important.

References