Thyroid Eye Disease
What is Thyroid Eye Disease (TED)
The same antibodies that attacked the thyroid can also attack the eyes. The same type of cells in the thyroid can also found in the muscles and tissue behind the eyes. It's not uncommon for people who have moderate to severe Graves' disease to also have Thyroid Eye Disease. The antibodies attack the muscle and tissue behind the eyes causing inflammation. When this occurs it causes the eyes to bulge forward. The eye lids can no longer close completely, which is necessary to protect your eyes from bright light and prevent dryness.
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Symptoms
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Pain/Pressure behind the eyes
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Feeling of sand in the eyes
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Irritated and Itchy - similar to pink eye
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Puffiness around the eyes
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Headaches or Migraines
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Sore/extreme tired eyes
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Sensitive to light
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Watery eyes (resulting from dry eyes)
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Frequent stringy mucus
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Waking up with eyes sealed shut from dried tears
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Double vision
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Starry-eyed look - like deer in headlights
It's a good idea for anyone who has Graves' disease to see an Ophthalmologist who specializes in TED to get a base line. If you think you may have TED, an experienced Ophthalmologist can help manage the symptoms.
It takes approximately a year to two years for TED to go into remission after the antibodies have significantly reduced as a result of effectively treating the thyroid. Depending upon the severity, it could take longer than two years before the eyes settle into place. Although TED is typically seen in conjunction with active Graves' disease, it is a separate autoimmune disease; therefore, it could develop years after treating the thyroid.
TED can be very painful at times but it is manageable. It's very important to keep your eyes moist - most doctors recommend GenTeal or Sustain liquid eye drops and nighttime ointment. Severe dry eyes can overtime cause serious and permanent eye damage.
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Treatment
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Prednisone
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Anti-inflammatory medication
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Steroid prescription eye drops
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Eye tear duct plugs
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Radiation therapy
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IV corticosteroid therapy
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IV rituximab therapy
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Orbital decompression surgery
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Eyelid surgery
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Eye muscle surgery
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Botox injections - still under review
The most exciting news of 2020 is a new medication, the first and only approved by the FDA, is Tepezza. It is a series of 8 IV infusions which take about 90 minutes. As a new drug, not every hospital is equipped to provide the treatment. So far the results look really good for those who have shared their treatment on our SGD Facebook group. A few uncomfortable side effects, but noticeable reduction of the swelling causing the bulging eyes.
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Helpful tips for managing TED
Use eye drops routinely throughout the day.
Night time eye ointment before going to bed.
Wear an eye mask at night when sleeping to keep the eyes from drying out.
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Have a clean washcloth near your bathroom sink for those mornings when your tears form a crust around your eyelashes and your eyelids are sealed shut. It took me about five minutes one morning to get my eyes opened. Scary and not fun!
Black out curtains in the bedroom help a huge amount when first waking up. That morning sun can be very painful!
At the end of a really bad day try sleeping with swimming goggles at night. Not very comfortable but they create an air tight chamber to prevent the eyes from drying out.
If you enjoy reading, invest in an E-reader so you can adjust the font size.
Sunglasses are a must. I never leave home without them!
Discuss eye tear duct plugs with your doctor. They are small little plugs inserted into the inner corner of the eyes to plug the tear ducts to keep the moisture around the eyes.
A little tip when taking photos is to have the camera above eye level angled down to avoid the appearance of staring bulging eyes.
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