What Is Thyroid Eye Disease?by Mary Shomon Patient Advocate
Thyroid eye disease — abbreviated as TED — is also known as Graves’ eye disease, Graves’ ophthalmopathy, Graves’ orbitopathy, and thyroid-associated orbitopathy (TAO). TED is an autoimmune disease where antibodies are attacking thyroid hormone receptors. The antibody complexes and inflammatory markers deposit into the muscles and soft tissues within the eye socket causing fibrosis or scarring. Up to half of all people with Graves’ disease have some degree of TED-related symptoms, with up to 20 percent having more severe TED symptoms.
Signs and Symptoms of Mild Thyroid Eye Disease
The signs and symptoms of TED include:
- Irritated or gritty feeling in the eye
- Pain in the eyes
- A sensation of pressure behind the eyes
- Redness in the whites of the eyes
- Dry eyes
- Swelling of eyelids
- Light sensitivity
- Bulging of the eyeballs (known as proptosis)
- A “staring” look
Signs and Symptoms of More Severe Thyroid Eye Disease
More severe forms of TED can cause the following signs and symptoms:
- Problems with eye movement
- Inability to close the eyelids
- Double vision
- Pressure headaches
- Decreased vision
- Ulcers in the cornea
- Optic nerve compression
In rare cases, vision can be threatened by TED.
How Is Thyroid Eye Disease Diagnosed?
Typically, TED is suspected if you already have a diagnosis of hyperthyroidism and/or Graves’ disease, and you have eye-related symptoms. Note, however, that you do not need to have traditional symptoms of hyperthyroidism for TED to be active.
Although it is more common for hyperthyroid patients to develop TED, hypothyroidism (low thyroid hormone levels) or even euthyroidism (normal thyroid levels) can also lead to TED.
A clinical examination, as well as imaging tests such as computed tomography (CT) scan or magnetic resonance imaging (MRI), can detect swelling and eye changes associated with TED.
Smoking and TED
Like most autoimmune diseases, you can’t prevent TED. But you should be aware that cigarette smoking significantly increases your chance of getting TED. Smoking also makes TED symptoms worse and reduces the effectiveness of TED treatment. The advice to Graves’ disease patients and anyone with diagnosed TED: Stop smoking yourself, and avoid second-hand smoke exposure.
Radioactive Iodine and TED
If you need treatment for Graves’ disease and you also have TED, research has shown that radioactive iodine (RAI) treatment frequently worsens the eye disease. Experts recommend that you be treated with antithyroid drugs or surgery instead. If you must have RAI, your doctor may treat you with steroid drugs around the time of the RAI to help protect your eyes.
Phases of TED
TED usually runs in phases. It starts with active disease, where inflammation, eye muscle changes, and symptoms are evident. Your symptoms can fluctuate but usually don’t completely disappear. This period tends to run from a year up to three to five years. After the active phase of TED, there’s a remission or resolution period, when symptoms resolve, and the condition frequently goes into remission or disappears entirely.
Treating Mild TED
Milder TED often resolves on its own over time, or after proper treatment for the underlying Graves’ disease. In addition to treating the underlying thyroid imbalance, mild TED is treated with self-care approaches for eye discomfort, including:
- Cool compresses for your eyes
- Wearing sunglasses to protect your eyes from light, sun, and wind
- Lubricating eye drops (artificial tears), gels, and ointments
- Elevating your head while sleeping
- Eye covers or eye taping while sleeping
Lifestyle Changes for TED
Some other lifestyle recommendations include:
- Stopping smoking
- Avoiding artificial sweeteners
- Staying hydrated
- Incorporating active stress reduction (such as meditation, breathwork, etc.) to support your immune system
Treating More Severe TED
More significant TED symptoms may be treated with:
- Prism glasses to correct double vision
- Steroid drugs such as prednisone to temporarily reduce swelling and improve symptoms
- External beam radiation to reduce swelling
Surgery for TED
Unless vision is threatened, surgery is usually performed only when the TED has reached an inactive or remission point.
When surgery is performed as a TED treatment, it’s typically done:
- To correct double vision
- To help close the eyelids
- To realign eye muscles
- To allow more space for swollen eyes and prevent loss of vision from compression of the optic nerve. This is known as orbital decompression surgery.
Low-Dose Naltrexone for TED
Low-dose naltrexone, known as LDN, is the off-label use of the drug naltrexone, prescribed at high doses for opioid, drug, and alcohol addiction. At low doses, the drug has shown the ability to modulate the immune system, and may help slow or stall the progression of TED in some patients.
Holistic Approaches for TED
Holistic and integrative physicians recommend a variety of natural approaches for TED, including:
- The herb bugleweed
- Antioxidants such as vitamin C and B vitamins
- Anti-inflammatory supplements such as fish oil
It is important to consult with your physician and ophthalmologist before starting any holistic treatment especially if the condition is vision threatening.
A Promising New Treatment
Experts have called for research into new therapies for TED. There is one promising new drug for TED. In clinical trials, the drug teprotumumab, provided significant benefits to TED patients, and almost half the subjects studied had reductions in eye bulging, pain, and swelling, and improved quality of life within six weeks. While the Food and Drug Administration called teprotumumab a “breakthrough therapy,” it is not yet approved. It may be commercially available after 2020.
Some resources with more information include:
- “Thyroid Eye Disease,” a book by Elaine Moore
- The “Thyroid Eye Disease” chapter in my book: “Living Well with Graves’ Disease and Hyperthyroidism”
- Johns Hopkins Wilmer Eye Center
- University of Michigan Kellogg Thyroid Eye Disease Center
- The University of California San Diego, Shiley Thyroid Eye Clinic