Your eyes have become so dry and irritated, it hurts to move them. Or they are red, watery, and swollen. Perhaps you are dealing with all of the above. You may have noticed that your eyes appear to be more puffy than before. In modern photos, you always look stunned. You may even have blurred or double vision. You know it’s not an allergy, but you can’t tell what’s going on.
You may have thyroid eye disease. And if you have autoimmune thyroid disease, especially Graves’ disease, that’s more likely to be. This is because about 90% of cases of thyroid eye disease appear in people with Graves’ disease, explains Christian Nasr, MD, an endocrinologist and medical director of the Thyroid Center at Cleveland Clinic.
What is thyroid eye disease?
Thyroid eye disease (TED) is a rare autoimmune disease of the eyes. TED causes swelling, inflammation, and damage to the muscles and tissues around the eyes. “The majority of cases are mild,” says Raymond Douglas, MD, PhD, a plastic, ocular and orbital surgeon practicing in Beverly Hills and director of the Thyroid Eye Disease Program at Cedars-Sinai in Los Angeles.
Symptoms can vary, but they include:
- Pain behind your eyes
- Eyelid retraction (when your eyelid does not close completely)
- puffy eyes
- Feeling that there is something in your eyes
- blurry vision
- double vision
- eyes red as blood
- eyelid swelling
- Constant eye watering
- Orbital pressure or pain
Who gets a TED?
TED usually occurs in people with Graves’ disease. Graves’ disease causes the thyroid gland to produce too much thyroid hormone, a condition called hyperthyroidism. “About half of patients with Graves’ disease will develop thyroid disease,” Nasr says. He adds that most cases of TED occur within a year to 18 months of developing Graves’ disease.
About 80% of people who come with TED have already been diagnosed with Graves’ disease, Douglas says. About 10% were diagnosed with TED before Graves. Nasr says another 5% of TED cases are of people with Hashimoto’s disease. In this condition, the thyroid gland does not produce enough thyroid hormone, a condition known as hypothyroidism. Although it’s rare, Douglas says some people with TED don’t have a thyroid condition at all.
Thyroid disease is more common in women than in men. But when men have TED, it tends to be more severe. Douglas says TED cases peak around age 40-50 and again around age 60.
What is the link between TED and hyperthyroidism?
Three conditions can cause hyperthyroidism. One is Graves’ disease, which is the most common. The other nodules are thyroid nodules and toxic multinodular goiter. “Graves’ disease is the only condition where you can see thyroid eye disease associated with high levels of thyroid hormone,” Nasr says.
Both thyroid eye disease and hyperthyroidism are immune system disorders. “From what we know, there are two types of receptors that seem to be the culprit,” Douglas says. The first is the thyrotropin receptor (TSH), which is mostly found on thyroid cells. The other is the insulin-like growth factor (IGF-1) receptor, which is mostly found in cells around the eyes. He adds that these two receivers sit next to each other, and they appear to be related.
Experts don’t understand why, but the immune system starts attacking these receptors. When it attacks the TSH receptor, this causes too much thyroid hormone. “It’s like turning the thermostat too high,” Douglas says. When the immune system attacks the IGF-1 receptor, it increases the amount of IGF-1. The cells around the eyes become oily, divide and accumulate additional scar tissue, causing thyroid eye disease.
If you have Graves’ disease, there are certain things that can increase your risk of thyroid disease. These include:
- Having a family history of TED
- to be female
- Get radioactive iodine treatment
- the elderly
- Poor thyroid control
What are the complications of TED?
TED can affect the two most important parts of the eye: the cornea and the optic nerve. “We make sure that both of them are monitored,” Nasr says.
Some of the potential complications that TED can cause include:
- puffy eyes
- corneal abrasion
- severe dryness
- Severe headache
- flashing problem
- Eyelids do not close completely
- Eye movement restriction
- double vision
- Increased pressure in the eye
- blindness (rare)
Nasr tells his patients to call immediately if they see a dark spot in their field of vision or several bright lights that are turned on and on. This may indicate damage to the optic nerve.
It’s also important to call right away if you have severe pain or redness around your iris (the colored part of your eye), he says. This could mean corneal damage.
Who treats TED?
Both doctors say that treating thyroid eye disease involves an integrative approach. The experts on your care team may include:
- Eye plastic surgeons
“It’s really a team approach among primarily endocrinologists and oculoplastic surgeons,” Douglas says. Many people start with an eye doctor to find out what’s going on. “Then, depending on the severity, it will be sent to someone like me, an eye plastic surgeon, who will then talk to them about medical versus surgical treatments,” he says.
Nasr says that many general ophthalmologists are comfortable with observing moderate TED, too. They can track your eye pressure, check your cornea, and perform tests to make sure your optic nerve is in good shape.
Nasr also works with neurologists to monitor the optic nerve. “Occasionally, we hire strabismus specialists to work on correcting the muscles to reduce double vision,” he says.
What do I do if I think I got a TED?
Many people attribute their eye problems to aging or sensitivity, Douglas says. And even when they try to figure out what’s wrong, they may be told it’s just an allergy. If you notice puffy eyes, vision changes, or your eyelids don’t close completely, Douglas advises seeing your doctor. “Don’t settle for an unsatisfactory answer,” he says.
Nasr is keen to ask all of his patients with autoimmune thyroid disease if their eyes are dry, uncomfortable, or if they have pain behind them. “Dry eyes are probably the most common symptom in patients with thyroid disease,” he says. But since dryness can be subtle, it can go unnoticed.
If you already have thyroid disease, you should see an endocrinologist anyway. They will continue to do what they do best – maintain good thyroid control. Nasr performs a comprehensive eye exam every year. A special instrument is used to measure the protrusion of the eyeball. An endocrinologist can refer you to another expert for treatment if needed as well.
You may not have a history of thyroid disease. In this case, your best option is to visit an ophthalmologist. They will be able to diagnose TED. You will also need to have your thyroid levels checked by your primary doctor or endocrinologist. This is because the chances of developing undiagnosed Graves’ disease are also high.
It’s rare, but you may have TED with normal levels of thyroid hormone. But even if it’s normal, you’ll need to have your levels checked regularly for the next year or two. This is because you may develop Graves’ disease during that time.