Thyroid Eye Disease and Its Impact on Daily Life

Like other chronic (long-term) conditions, living with thyroid eye disease (TED) means you might have good days and bad days. You may have days where your eyes are more irritated, swollen, painful, gritty, or sensitive. Because TED is a progressive disease, the symptoms do not go away and continue to get worse if left untreated.¹

Understanding how TED impacts your daily life, making some changes to your environment, and getting the help you need will set you up for success on your journey with living with TED.

Make your environment safe

As TED progresses, you may find that judging distances become difficult. Using contrasting, colored tape to mark the top and bottom stairs can help avoid trips and falls.²

If you have throw rugs, consider removing them. Rugs, cords, or other items on the floor quickly become trip hazards when you have low vision or problems with depth perception.²

Other changes that can make your home more safe include:²

• Wear shoes that fit well to help avoid slipping
• Avoid confusing patterns on steps or floor
• Keep clutter to a minimum to avoid trip hazards
• Make sure all rooms in your home and areas outside your home are well-lit

Adjust for light sensitivity

Thyroid eye disease often leads to light sensitivity or a painful reaction to light. Light sensitivity usually occurs as a result of an irregular, dry eye surface that can cause light to scatter in many directions. The scattered light can cause discomfort and pain. In contrast, a smooth, moist eye surface focuses light without scattering.^3,4

Swelling, irritation, and bulging of the eyes from thyroid eye disease can make it hard to blink. When you blink less often or have a hard time closing your eyes, the surface of your eyes gets dry. This can lead to light sensitivity.²

Some ways you can reduce discomfort include:²

• Use dimmer switches to control the brightness
• Replace light bulbs to soften light
• Use screen covers to reduce the brightness of computer screens, monitors, and other screens

Keep eyes moist

At times, keeping your eyes moist when you have TED may seem like a losing battle. When your eyes are puffy, sore, and irritated, they are often also dry. You may have retracted eyelids from TED, which means your eyelids are pulled back from their normal position and do not close the way they normally would. All of this leads to symptoms of dry eye.^2>/sup>

Your TED specialist can recommend the best treatment to keep your eyes moist, but you can take some measures at home, too. Some things include:²

• Avoid direct airflow from vents or fans
• Use a sleeping mask at night to keep your eyes covered while sleeping
• Use a humidifier to keep the air moist
• Wear eye protection as needed when cleaning to avoid getting dust in your eyes

Driving

When first diagnosed with TED, many people worry that they will not be able to drive again. People with TED should not drive if their vision blurs or they experience double vision. People with TED may be legally required to let their state motor vehicle department and insurance company know about a diagnosis that could impair their driving. This varies from state to state and country to country.^2,5

If you have dry eye symptoms, driving at night can make your symptoms worse. If you have strained eyes or used your eyes all day, your eyes can be drier than usual. Light scattering from dry eyes is especially noticeable at night because the pupil is usually dilated (open) under low-light conditions.⁶

As a result, more scattered light can enter the pupil at night compared to scattered light during the day. That is why bright, oncoming headlights can be especially bothersome when driving at night.⁶

Reading

Reading with TED can be uncomfortable. Swollen, gritty, and dry eyes make words blurry and hard to read. When your eyelids are swollen and you cannot blink as you would normally do, the surface of your eyes dries out.²

In a 2018 study, researchers found that dry eye symptoms can slow your reading speed by as much as 10 percent compared to people without dry eye. Also, dry eye symptoms make it uncomfortable to read for more than about 30 minutes at a time.7

Helpful tips for reading include:²

• Increase the font size and adjust the brightness of the screen you are reading
• Use vision accessibility features on smartphones
• Use text-to-speech apps
• Use voice-activated virtual assistants like Amazon Alexa or Siri

Emotional impact

The effects of TED impact much more than your eyes. This is hardly surprising since your face and eyes are the first things people notice when greeting and speaking to you. TED can change the look of your eyes and face, even if you are the only one to notice these changes at first.⁸

The chain reaction of emotions that can follow the physical changes can be shocking and disrupting to your life. Feelings of insecurity can lead to social isolation and depression, anger, and sadness.⁸

There are treatments that can help, especially in the inactive phase when the damage from TED can be surgically repaired when needed. Talk to your TED specialist about your emotional health as well as your physical health – you are not alone. Counseling and mental health services are also available when needed, as are support groups with people going through the same thing you are.⁸

Talk to your TED specialist about how thyroid eye disease is impacting your daily life. Do not downplay your symptoms, write them down, and bring a friend or family member with you to your appointments when you can. Treatments are available to help, and your TED specialist will partner with you to find the ones best for you.²