Imagine looking in the mirror each day and seeing your eyes slowly getting bigger and bigger, beginning to bulge out of their sockets and change your face. Not only do you not look like yourself, but the world has become blurry, watery, and disorienting. You struggle to manage daily activities with double vision, severe pain, and discomfort. In many cases, you can no longer drive, work or read, all of which can lead to social isolation and loss of independence. This is the experience of many people living with a thyroid eye disease (TED).
TED is a rare disease in which the immune system attacks the muscle and fat tissue behind the eye causing inflammation, swelling, and eye bulging. Unfortunately, getting a firm diagnosis is sometimes delayed as many people with TED are juggled from doctor to doctor for months, sometimes years.
To complicate things further, the terminology is confusing. Hyperthyroidism, also known as Graves’ disease, is a condition in which patients have an overactive thyroid. TED is most common in people with Graves’ disease.1 In fact, up to 50% of people with Graves’ disease will develop TED.2
However, TED can also occur with hypothyroidism, Hashimoto’s disease, and even in those with a normally functioning thyroid gland. While related to those conditions, TED itself requires separate specialists and separate management, monitoring, and treatment plan.
According to a new study, the prevalence of TED is highest among African Americans (23%) and white Americans (18%).3
Since most people who have TED also have hyperthyroidism (Graves’ disease), it is important to understand the difference in symptoms between the two conditions. Hyperthyroidism is an autoimmune disorder where your thyroid becomes overactive and produces more thyroid hormone than the body needs.6 This can result in fast or irregular heartbeat, anxiety, weight loss, insomnia, and heat sensitivity.7
If you have hyperthyroidism or Graves’ disease, you may also notice changes in your eyes, but these are most likely signs of TED. Common symptoms of TED include:5
The primary issue with TED is the inflammation of fat or muscle tissue or both around or within the orbit. Due to this increase in the size of the surrounding tissues, the eye is pushed forward (proptosis), giving the appearance of larger than normal eyes. This can also lead to a “staring” or asymmetrical appearance.2,8
In advanced cases, the excessive fat and muscle tissue growth behind the eyeball can place a great deal of pressure on the optic nerve. This compression of the nerve can lead to decreased vision, and in rare cases, blindness or vision loss.9
If you have hyperthyroidism or Graves’ disease, your thyroid level is most likely being managed by an endocrinologist who cares for people with thyroid conditions. An endocrinologist may discuss the risks for developing TED. However, at the first sign of any changes in the eyes, it is important to see an experienced TED Specialist, like an oculoplastic surgeon or neuro-ophthalmologist.
A team approach is key. The TED Specialist and endocrinologist should work in partnership to co-manage the TED and underlying thyroid condition.
When you first meet with a TED Specialist, they will perform a series of exams to set a baseline or starting point to measure symptoms against going forward. At your baseline eye exam or the first comprehensive eye exam, your doctor will want to know all about your history with both the thyroid condition as well as when the eye symptoms started. From there, tests will be run to assess many factors, including:
All these tests will determine where you are in the course of the disease and the best path of treatment.
It is important to understand that this process will often require several visits and time to review the analysis of the laboratory and diagnostic testing with both the patient and other care providers involved.
Eye exams at subsequent visits will determine how or if the TED is changing. In between exams, patients will also be asked to carefully track their symptoms, so doctors have the history of any changes or “flare-ups.”
At the onset of TED, people may make lifestyle changes including using non-prescription or prescription lubricating eye drops, wearing sunglasses to help with light sensitivity, and elevating the head of the bed to help relieve pressure and swelling at night.
Treatment options vary based on the severity and duration of the disease. For some patients with minor signs and symptoms of TED, simple lifestyle changes combined with over-the-counter treatments can be impactful.
For others, more sophisticated treatment regimens are required. Some people are prescribed oral steroids to reduce the inflammation, while other people are candidates for surgery, like orbital decompression. There is also an IGF-1R inhibitor therapy that is given through IV infusion.
TED is a progressive condition that worsens over time if left untreated. The longer TED goes untreated, the more likely serious eye damage will occur. As soon as any changes in the eyes are noticed, especially if you have Graves’ disease or another thyroid condition, contact a TED Specialist immediately for an appointment.
While many in-person care facilities are following strict safety guidelines, many doctors are also offering telehealth visits. To participate in a telehealth visit, all patients need is access to a smartphone or computer with a camera. Patients must be in a well-lit environment and hold or position their device still for an optimal experience.
Despite the virtual circumstances, TED Specialists, such as oculoplastic surgeons, can still conduct a thorough exam simulating an in-office experience. This will include a review of medical history and assessment of visual acuity. By positioning the phone or computer camera close to a person’s eyes, TED Specialists can also assess eyelid measurements and determine an accurate clinical activity score. Not wanting to leave your house is understandable during these times, but it is important to embrace telehealth to ensure consistent management and monitoring of TED.
People living with Graves’ disease and TED can find advice, connection, and resources through the following organizations and communities:
Though a rare disease can feel isolating and lonely, you are not alone. Acting quickly and finding the right TED Specialist can help avoid the confusion, misinformation, and delayed care leading up to diagnosis and accelerate the attention you need.