Imagine staring into the mirror daily and seeing your eyes grow larger and bigger. Your eyes will bulge out from their sockets, and you’ll be able to see your face change. You no longer look like you used to, and the world is blurry, disorienting, and watery. It is difficult to carry out daily activities with double vision, extreme pain, and discomfort. Many times, it is impossible to drive, work, or read. This can cause social isolation and loss of independence. Many people with thyroid eye disease (TED) experience this.
TED is a rare condition in which the immune system attacks muscle and fat tissue behind an eye. This causes inflammation, swelling and eye bulging. Unfortunately, many people suffering from TED have to be referred from one doctor to another for months or even years.
The terminology can be confusing, which adds to the complexity. Graves’ disease is also known as hyperthyroidism. This is when patients have an overactive thyroid. TED is more common in those with Graves disease. TED can be found in as many as 50% of Graves’ patients.
TED can also be caused by hypothyroidism or Hashimoto’s syndrome, as well as those with a normal thyroid gland. Although TED is closely related to these conditions, TED requires separate specialists as well as separate management, monitoring and treatment plans.
Who’s at Risk for TED?
- Thyroid conditions such as hyperthyroidism or family history are associated with a higher risk of developing TED.
- TED is more common in women than in men, but the severity of the disease is more common in men.
What symptoms are associated with thyroid eye disease?
- Most people with TED also have Graves’ disease (hyperthyroidism). It is important to know the differences in the symptoms of these two conditions. Hyperthyroidism is an autoimmune disorder in which your thyroid produces more thyroid hormone than the body requires. Hyperthyroidism can cause irregular or fast heartbeats, anxiety, weight loss, insomnia, and heat sensitivity.
- You may notice changes in your eyes if you have Graves’ disease or hyperthyroidism. These are the most common signs of TED. The following symptoms characterize TED:
- Dry, gritty eyes
- Eyelid swelling and redness can cause inflammation and irritation.
- Watery, tearing eyes
- Proptosis, also known as bulging eyes (protrusion of one globe or both of the eye globes), is also known.
- Pressure or pain behind the eyes
- Sensitivity to light
- Double vision
- Retracted eyelids prevent eyelids from closing properly.
- The main problem with TED is inflammation of fat tissue, muscle tissue, or both. Proptosis is when the eye appears larger than normal due to the increased size of surrounding tissues. This can lead to an “asymmetrical” appearance or staring.
How should TED be treated?
- An endocrinologist, who treats people with thyroid conditions such as Graves or hyperthyroidism, will likely manage your thyroid levels if you have Graves disease or hyperthyroidism. A doctor may talk with you about the potential dangers of 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.
- It is important to work in a team. To co-manage TED, both the TED Specialists and endocrinologists should work together.
What can you expect at the appointment?
- A series of tests will be performed when you first meet a TED Specialist. This is to establish a baseline to determine if your symptoms will continue. Your history and when your eye symptoms began will be discussed with your doctor at your initial comprehensive eye exam. Tests will then be performed to determine many factors, including:
-
-
- Vision
- Eye muscle movement
- Eye pressure
- Measurement of the eyelids
- The bulging eyes can go as far as the eyelids will allow!
- Retina and optic nerve impact
-
- Peripheral vision
-
- These tests will help you determine your current stage of the disease as well as the best treatment.
- This process can often take several visits. It’s important to remember that the lab and diagnostic testing will need to be reviewed with the patient and other caregivers.
- Eye exams will determine TED changes at future visits. Patients will be asked to keep track of their symptoms between visits so that doctors can see if there have been any changes.
