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Lupus and Thyroid Eye Disease: 7 Facts To Know

Medically reviewed by Zeba Faroqui, M.D.
Written by Sarah Winfrey
Posted on June 20, 2024

Having systemic lupus erythematosus (SLE, the most common form of lupus) can increase your risk for developing other autoimmune diseases. One of these is autoimmune thyroid disease (AITD). If you’ve been diagnosed with lupus, your rheumatologist may have told you to keep an eye out for thyroid symptoms.

Some people on MyLupusTeam have experienced an autoimmune thyroid condition like Graves’ disease alongside lupus. One said, “I developed Graves’ disease first and a year later SLE.”

If you suspect a thyroid disease or you have already been diagnosed with one, there are a few things you should know about these conditions and thyroid eye disease (TED). Understanding these facts can help you monitor your health and maintain a high quality of life and well-being.

1. Lupus Is Connected to Autoimmune Thyroid Diseases

The connection between lupus and autoimmune thyroid disorders has been observed for over 50 years. Hypothyroid diseases, where the thyroid doesn’t produce enough hormones, are the most common ones to overlap with lupus. This is true for anyone diagnosed with lupus, regardless of their biological sex.

Hyperthyroid diseases, in which the thyroid produces too many hormones, are also more common in people diagnosed with lupus than in the rest of the population. However, they are not as common as hypothyroid conditions.

There’s no single thyroid condition that is common in people diagnosed with lupus. Rather, it seems that some underlying causes of lupus overlap with thyroid conditions in general — particularly with hypothyroidism.

It is also important to note that thyroid antibodies commonly overlap with antinuclear antibodies (ANA) seen in lupus. This means if you’re living with a thyroid condition and have a positive ANA test, you don’t necessarily also have lupus.

2. Graves’ Disease Is the Most Common Cause of Hyperthyroidism and Thyroid Eye Disease

Graves’ disease causes between 60 percent and 80 percent of all hyperthyroidism, which is usually the cause of TED. Approximately 25 percent of people diagnosed with Graves’ disease develop TED, which may also be referred to as Graves’ orbitopathy, Graves’ ophthalmopathy, or Graves’ eye disease. Although TED is typically associated with Graves’ disease, it can occasionally occur in people with hypothyroidism.

3. Thyroid Eye Disease Has a Number of Symptoms

In thyroid eye disease, the fat and muscles behind the eye become inflamed. This inflammation is a direct result of the immune system not working properly.

People diagnosed with thyroid eye disease will often have eyes that seem to bulge out of their sockets due to this inflammation. However, there are other common symptoms, like:

  • Red eyes
  • Inflamed eyes
  • Eye pain
  • Pressure in or around the eyes
  • A gritty sensation, or the feeling that there’s something in the eye
  • Eyelid changes, like puffing up or retracting
  • Double vision
  • Vision loss
  • Increased sensitivity to light
  • Inability to close eyes all the way
  • Problems moving the eye around in its socket

Most of the time, thyroid eye disease will involve both eyes at the same time. Some people only experience symptoms in one eye, though. Many find that their symptoms eventually go away on their own, though a few experience long-term vision problems due to complications from TED.

4. Graves’ Disease Has Other Symptoms, Too

Graves’ disease can cause symptoms beyond eye issues. Some people experience thickened or discolored skin, especially on the top of the foot or the shin. Other symptoms to watch for include:

  • An enlarged thyroid gland
  • Changes in menstrual cycles, libido (sex drive), or erectile dysfunction (inability to get an erection)
  • Increased fatigue, anxiety, or irritability
  • Heart palpitations
  • Tremors in the hands or fingers
  • New or increased problems sleeping
  • Increased sensitivity to heat or increased sweating
  • Weight loss without trying
  • More frequent bowel movements

If you experience these symptoms, especially alongside symptoms of thyroid eye disease, consult your rheumatologist or an endocrinology expert. They should be able to test you for Graves’ disease and provide an accurate diagnosis.

5. There Are Several Treatment Options for Graves’ Disease

Treating Graves’ disease involves stopping the thyroid from producing too many hormones or blocking those hormones from affecting the body. Your rheumatology team or endocrinologist may recommend radioactive iodine to destroy the overactive thyroid cells. Medications that limit thyroid function or beta blockers may be prescribed. Sometimes, thyroid surgery is the best way to treat Graves’.

If your thyroid is underactive, you will need to take medication to supplement the necessary hormones.

If you live with more than one autoimmune condition, like lupus and Graves’ disease, it’s important to work closely with your doctors to ensure that treatments for one condition are safe to use alongside treatments for the other.

6. Treatments for Thyroid Eye Disease Can Help Ease Symptoms

Treating your overactive thyroid may not improve your eye symptoms. Treatments for thyroid eye disease include:

  • Additional lubrication for your eyes, in the form of gel or tears
  • Corticosteroids, which can also treat lupus flares
  • Surgery
  • Teprotumumab (Tepezza), the first medication approved by the U.S. Food and Drug Administration (FDA) specifically for TED

You may need a combination of these treatments to protect your vision and improve thyroid eye disease. Additionally, your doctor may recommend quitting smoking or adding selenium supplements to your diet to help relieve symptoms.

7. Your Doctor Can Diagnose and Treat Thyroid Problems and Thyroid Eye Disease

If you suspect you have thyroid problems or are experiencing symptoms of thyroid eye disease, consult your health care provider immediately. They can provide medical advice and order necessary tests.

Once you understand your condition, your health care team can help you find an effective treatment.

Consider asking your doctor about routine thyroid checks. One MyLupusTeam member mentioned, “Another doctor’s appointment Thursday for my annual thyroid checkup.”

Talk With Others Who Understand

On MyLupusTeam, the social network for people with lupus and their loved ones, more than 229,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Are you concerned about developing thyroid eye disease alongside lupus? Share your experience in the comments below, or start a conversation by posting on your Activities page.

Posted on June 20, 2024
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Zeba Faroqui, M.D. earned her medical degree from the SUNY Downstate College of Medicine. Learn more about her here.
Sarah Winfrey is a writer at MyHealthTeam. Learn more about her here.

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