(BPT) - Did you know that up to 40% of people with Graves' disease may also develop Thyroid Eye Disease (TED)? Although related, TED and Graves' disease are different conditions that require different treatments. Failing to recognize and treat TED can lead to serious eye complications — including double vision, eye bulging (proptosis), chronic pain and even vision impairment.
TED can progress rapidly, and without timely intervention, inflammation (redness and swelling) and scar tissue can form around the eyes causing damage. The longer TED goes untreated, the more likely serious damage can occur.
Because TED can progress independently of thyroid hormone levels, managing Graves' disease alone may not be enough to prevent or treat eye symptoms. That's why it's essential for people living with Graves' disease to stay alert to any eye changes, seek care from a TED Specialist at the first sign of symptoms, and advocate for a proper diagnosis and care. TED Specialists are often select ophthalmologists and endocrinologists, as well as oculoplastic surgeons and neuro-ophthalmologists, with experience treating TED.
Signs and Symptoms of TED
Some common signs and symptoms of TED are:
- Bulging eyes
- Double vision
- Dry, gritty eyes
- Red, swollen eyes and eyelids
- Watery, teary eyes
- Eye pain and eye pressure
- Sensitivity to light
- Retracted eyelids (your eyelids can't close properly)
The Impact of TED
TED can impact people beyond physical symptoms. Changes in appearance — such as eye bulging — can affect a person's emotional well-being. Christine Gustafson, who lives with TED and is the CEO of the TED Community Organization, shared, "Even if it was only just the physical appearance, it was enough to really disrupt my life." She described how strangers would stare and people would whisper in public, leaving her feeling alienated. "You make a choice — either you go on with your life or you withdraw. And many people withdraw," she said, but finding support from others in the autoimmune community and understanding how to self-advocate can make a difference.
The Importance of Self-Advocacy
The road to a TED diagnosis is not always straightforward. Many people spend months — or even years — seeking answers as they navigate a range of eye symptoms often confused with allergies, dry eye or even aging, leading to delays in receiving the appropriate diagnosis and care.
LaQuilla Harris, who lives with Graves' disease and TED, met with four doctors before finding a team that understood her needs. Now, LaQuilla advocates for others to understand their risk. "I have struggled to manage my TED symptoms because they were undetected for so long. That's why I want to ensure that others living with a thyroid condition such as Graves' disease understand their risk and get the proper care they need."
Tips to Be "TEDucated"
If you or a loved one lives with Graves' disease, knowledge about TED is power.
- Know the signs and symptoms – Symptoms like eye bulging, double vision, grittiness or redness may be early indicators of TED. Be sure to observe and track your symptoms often and if you notice any changes, let your doctor know right away.
- Understand the connection – Graves' disease and TED are related but separate autoimmune conditions. Even if your thyroid levels are stable, TED can progress independently, so it's important to monitor your eye health continuously.
- Find the right care team – Unlike other eye doctors, TED Specialists have the right experience to provide the right care. TED Specialists are often select ophthalmologists, endocrinologists, oculoplastic surgeons and neuro-ophthalmologists with experience treating TED. It is important to work with a TED Specialist early on so you can build the best treatment plan for your eyes and avoid further damage to them.
- Advocate for yourself – If you've been diagnosed with Graves' disease and notice any eye symptoms, ask your provider directly about TED and request a referral to a TED Specialist.
- Build your community – Getting TEDucated also means connecting with the wider autoimmune community for support and resources. If you have TED and/or a thyroid condition, like Graves' disease, you aren't alone. Educate your friends and family about your conditions and seek support groups online or in your community.
Visit ThyroidEyes.com to learn more about TED.
