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Thyroid Eye Disease and Mental Health

The effects of TED can be life-changing. Keeping an eye on your mental health can help you better manage your symptoms and well-being.

with Yasmin Akhunji MD and Chris Airey MD

An older man smiles while addressing a diverse group in a circle of chairsJoining a support group can be a helpful way to maintain a sense of community while dealing with thyroid eye disease.

What is thyroid eye disease?

Thyroid eye disease (TED), also referred to as Graves’ ophthalmopathy, stems from Graves’ disease, an autoimmune condition that impacts thyroid function and can affect the skin and eyes. 

In Graves’ disease, your immune system attacks the thyroid gland, causing it to become abnormally large. This enlargement increases the secretion of thyroid hormone, otherwise known as hyperthyroidism. With Graves', your immune system may also attack the area behind your eye, causing the swelling and inflammation that leads to thyroid eye disease.

There are other possible causes of TED, including hypothyroidism and Hashimoto’s thyroiditis, although it occurs less commonly in people with these conditions. 

Here’s what you should know about Graves’ ophthalmopathy:

  • TED generally develops more commonly in women than in men. It is thought that this is due to a higher incidence of hyperthyroidism in women. 
  • Risk factors include having had radioactive iodine therapy, being middle aged, and smoking cigarettes. Smoking can reduce the effectiveness of medical treatment for Graves’. 
  • TED occurs in about half the cases of Graves’ disease. 
  • When TED is active, the symptoms can last from 6 months to 2 years or more. There may be long inactive periods of time with fewer symptoms as well.
  • TED has a genetic component, although the underlying mechanism behind the disease is not fully understood. 
  • People with TED may be at relative risk for other autoimmune disorders. These can include rheumatoid arthritis, lupus, vitiligo, Addison's disease, celiac disease, and more.

What causes thyroid eye disease?

When your body’s immune system attacks the tissue of the eyes, it causes swelling and bulging (known as propotosis). This causes the eyes to push forward, making someone look like they are staring. 

The eyes can also become very bloodshot and strained. When the inflammation is severe, vision can be compromised. This is caused by damage to the back of the eye as well as ulcers that can develop on the front of the eye.  

What are the symptoms of thyroid eye disease?

  • Bulging eyes, which causes the retraction of the eyelids. This symptom may remain even when the disease is not active or progressing. 
  • Headache
  • Impaired ability to move the eyeballs
  • Dry eyes
  • Light sensitivity (photophobia)
  • Feeling of grit, dirt, or sharpness in the eyes
  • Watery eyes
  • Double vision
  • Eyelid positioning differences

How is thyroid eye disease treated? 

Common treatments include medications such as corticosteroids, (particularly prednisone) and ointments. 

“There are a few things that can alleviate discomfort or lessen progression,” says Yasmin Akhunji MD, of Paloma Health: “Patients might try using cool compresses or eye drops for relief. Sunglasses may help with light sensitivity or prescription glasses containing prisms to help with double vision. And eyelid surgery, eye muscle surgery, or orbital decompression surgery may be helpful depending on a patient's symptoms. I recommend working with your care team to determine the best treatment plan for your specific needs.”

In 2020, a new medication, teprotumumab, went on the market: “It’s the first FDA-approved prescription medication to treat thyroid eye disease,” says Dr. Akhunji. “It's delivered through an IV treatment once every 3 weeks for 8 rounds and can reduce eye bulging, double vision, and pain. Many patients say the most significant result is that they feel and look like themself again!" It's certainly cause for celebration, however, recent research examining adverse side effects of treatment with teprotumumab found that over half the participants of a small study experienced hearing loss to varying degrees. It's a good idea to talk with your doctor about the possibility of side effects, and to weigh your options as you decide on a course of treatment for your TED.

How does thyroid eye disease affect mental health?

Although TED primarily affects the body, it certainly has an emotional and psychological component as well. TED can lead to disability and aesthetic changes to the face, which is why some patients also deal with mental health challenges.

According to a recent survey of 181 physicans treating TED — both ophthalmologists and endocrinologists — patients with the disease experienced difficulties functioning in social situations and decreased well-being. About a third of patients experienced anxiety and depression. 

In particular, the survey found that ocular pain, problems with the alignment of the eyes (known as strabismus), and double vision (also called diplopia) had the highest impact on quality of life. These symptoms can lead to stressful situations such as:

  • having to leave a job
  • quiting hobbies
  • limiting social situations. 

According to Chris Airey MD, there may be other notable side effects: “TED can also cause lapses in short-term memory, poor concentration and poor mental alertness as it is sometimes also caused by thyroid underactivity.”

Due to the physical changes — as well as the pain, blurred vision, and cognitive difficulties, “TED can severely impact patients during social situations and patients may start to withdraw socially,” says Dr. Airey. 

What can your doctor do to support your mental and emotional health?
The survey found that physicians should:

  • Recognize the psychological impact of TED, and keep it in mind when treating you
  • Talk directly to you about how the disease is making you feel, not just physically but emotionally
  • Offer telemedicine visits so that you can speak to the doctor at more convenient times
  • Make space during appointments to answer your questions about lifestyle, disability, emotional well-being, and anything else of concern

Feel free to bring up any issues you are experiencing with your doctor, and to ask for the above support if it isn't already offered. 

What can you do to support your mental health with thyroid eye disease?

First, work with your doctor and care team: “If you're a patient, ask your doctor questions about how your condition will affect your daily life and your work. Be aware of the mental health impact of your condition so you can ask to be connected to resources early,” says Dr. Airey. 

You may also want to seek community support. The Graves’ Disease and Thyroid Foundation offers support groups for people with Graves' disease, thyroid eye disease and other thyroid conditions. They can be a great way to learn more about your condition, air grievances about your experience, and find support and validation. 

There are other things you can do to support your mental health, including:

  • Practice self-compassion. If your lifestyle has changed due to TED, it may be frustrating and isolating. Practice self-compassion, self-love, and patience when moments get tough.
  • Maintain or create a sense of community. Whether through support groups or hobby groups — in-person or online — embracing human connection can help boost your spirit and resilience. And sharing with others who may have similar experiences to your own can help combat the social separation TED often creates.
  • Regular exercise. Although it may be difficult to think of exercising as beneficial for thyroid health, science indicates that regular movement — which doesn’t have to be strenuous — can not only help to boost your mood but support healthy hormone levels. If you have trouble seeing, be sure to speak with a doctor about which kinds of movement are safe for you.
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Thyroid Eye Disease Caused by Graves': A Search for Treatment