Living With Thyroid Eye Disease: Challenges and Solutions

For severe cases of dry eyes due to TED, Catherine Hwang, MD, an ophthalmologist and oculoplastic surgeon at Cleveland Clinic Cole Eye Institute in Ohio, suggests:

• Botox injections to relax upper eyelids that are retracted or inflamed

  [5]

• A tarsorrhaphy stitch in the corner of the eye to join the upper and lower eyelids partially or temporarily to protect bulging eyes

  [6]

2. Problem: Eye Pain

Pain in TED can stem from inflammation, muscle congestion, surface irritation, or even sinus pressure, says Kinde. “The first step is identifying the source.”

Solution

During the active inflammatory phase, medication to reduce inflammation of the tissues behind the eye can significantly improve the discomfort from pressure. Some other tips for reducing eye pain include:

• Eye drops to keep eyes moist and reduce inflammation
• Short course of topical steroids to reduce inflammation

  [7]

• Elevating the head during sleep to reduce pressure on the eyes
• Reducing salt intake to help minimize swelling

3. Problem: Impaired Vision

Common vision problems in people with TED include double vision, blurred vision from dry eyes, or light sensitivity, says Kinde.

Solution

One of the main ways to address vision problems is to make sure you continue to see your eye doctor regularly. Some other strategies include:

• Temporary prism glasses to align images for double vision

  [8]

• Eye patching one eye intermittently (alternating eyes to prevent strain) to reduce visual confusion, especially when driving
• Lubrication to improve visual clarity
• Tinted lenses to help with light sensitivity
• Strabismus (eye muscle) surgery when TED stabilizes

  [9]

4. Problem: Getting and Monitoring Treatment

Solution

TED requires a partnership between the patient and the physician, says Kinde. “Staying informed, asking questions, and understanding the overall arc of treatment can help patients feel more empowered in managing their condition,” he says.

Here’s how you can stay on top of treatment:

• Track symptoms to identify patterns and respond early.
• Attend regular follow-ups during the active phase, even if symptoms seem stable.
• Take medication as directed to maintain stable thyroid levels.

  [11]

• Quit smoking, which can exacerbate symptoms.

Support for maintaining your treatment plan:

• Ask a friend or family member to accompany you to appointments, not only for practical help getting to and from the treatment but also for emotional support and to help process information.
• Ask about multidisciplinary TED clinics that can help you get support for TED management in areas such as home modifications, diet, and exercise.

5. Problem: Emotional Distress

Having TED can have a serious impact on your emotional health. There can be anxiety, driven by both the uncertainty of the disease and the physical changes to one’s appearance caused by certain symptoms such as proptosis. “Because eyes are central to our physical identity, even small changes [make us] feel highly exposed,” says Kinde. “Patients often become hyperaware in social interactions, worrying about how others perceive them. That constant vigilance fuels anxiety.”

Visible symptoms caused by TED can cause particular emotional distress for some people “The eyes communicate emotion and confidence,” he adds. “When TED alters eyelid position or causes proptosis, patients may feel their outward expression no longer matches how they feel internally.”

Solution

When it comes to emotional health, awareness is half the battle, says Kinde. Take control of the emotional impact of TED:

• Educate yourself about TED, including the latest treatment and management strategies, to help reduce fear of the unknown.
• Seek mental health support early, especially if anxiety or depressive symptoms are interfering with daily life.
• Join support groups to reduce isolation and connect to others who understand what you are experiencing.
• Engage in open conversations with loved ones about how TED affects your daily life.
• Have a clear medical and surgical roadmap to give you hope that your condition can and will improve.
• Try mindfulness, relaxation, or stress-reducing activities to help reduce emotional tension.

6. Problem: Managing Work and Staying Productive

Work can feel overwhelming during active TED and may also impact your ability to perform your duties normally even after the disease is stabilized — for instance, if you experience vision impairment and light sensitivity.

Solution

Take stock of what barriers and challenges you may be experiencing in your workplace and make adjustments as necessary. (You may want to talk to your eye doctor about occupational therapists who might be able to help you find TED-tailored strategies to fit your individual needs.)

• Some simple changes you can make to improve the work environment include: Making computer work more comfortable by setting your screen height to an optimal level, enlarging the font size, or using voice-to-text tools.
• Keep a humidifier in your work space to prevent dry eyes.
• Take scheduled breaks to give your eyes a rest and apply any prescribed drops to keep your eyes lubricated.
• Use prism lenses for double vision.
• Discuss your need for workplace accommodations with your employer for adjustments such as flexible hours, remote work, or lighting changes.

The Takeaway

• Eye dryness, pain, impaired vision, and emotional distress are some of the top challenges for people living with thyroid eye disease.
• Medications, seeing your doctor for TED treatment and follow-up visits, and other measures can help manage symptoms such as dry eyes, pain, and vision impairment.
• By working with your eye doctor, you can find solutions to common problems and challenges of living with TED.