If you live with thyroid eye disease (TED), you may also be at risk for developing another autoimmune disease, such as lupus. This is especially true if your thyroid eye disease is caused by Graves’ disease. It’s important to be aware of the symptoms of lupus and other conditions related to TED and to let your health care provider know if you notice any symptoms. That way, if you do develop it, you can start treating it early.

If you think you may also have lupus, it’s time to talk to your doctor about your next steps. Understanding what to look for can help you track your own health. Then, you can get support if you start experiencing new symptoms in addition to those of thyroid eye disease.

1. Graves’ Disease Is the Most Common Cause of Thyroid Eye Disease

Graves’ disease causes between 60 percent and 80 percent of all cases of hyperthyroidism, a condition where the thyroid makes too much thyroid hormone. This is usually the cause of TED. About 25 percent of people diagnosed with Graves’ disease also develop TED, which is sometimes referred to as Graves’ orbitopathy, Graves’ ophthalmopathy, or Graves’ eye disease.

While TED is most commonly associated with Graves’ disease, it can occasionally happen in people with hypothyroidism. This is a condition in which the thyroid doesn’t make enough hormone.

2. Graves’ Disease and Lupus Are Connected

People living with Graves’ disease are also more likely to have systemic lupus erythematosus (SLE). This is the type of lupus most people talk about. Only about 0.015 percent of people without lupus have Graves’ disease. In people who are diagnosed with lupus, between 1 percent and 3 percent also have Graves’ disease.

Researchers often don’t know which condition develops first. However, being diagnosed with either Graves’ disease or SLE seems to put a person at a higher risk of developing the other condition, too. One study found that men with Graves’ disease are more than 80 times as likely to develop lupus.

While we know there’s a connection between Graves’ disease and lupus, scientists aren’t yet sure exactly how or why the two are linked.

3. Thyroid Eye Disease Is Also Tied to Cutaneous Lupus

There are four types of lupus. SLE, as mentioned above, can affect many different systems in the body. Cutaneous lupus causes sores or a skin rash, most often after being out in the sun. Drug-induced lupus is when certain medications cause lupus symptoms, and it usually goes away once the medication is stopped. Neonatal lupus happens when a pregnant woman passes autoimmune chemicals in her blood to her baby.

TED is more common in people who have been diagnosed with cutaneous lupus and who don’t have SLE. Autoimmune thyroid conditions, like Graves’ disease, are the most common autoimmune conditions found in people with cutaneous lupus. As with SLE, it’s not clear which condition comes first. They may also occur together for other reasons.

4. Lupus and TED May Be Connected for Several Reasons

Experts don’t know exactly why SLE and TED are connected. However, it might be due to:

• Shared genes — Similar genes could be involved in both conditions.
• Risk factors — People at risk for Graves’ disease often have similar risk factors for lupus.
• Antibodies — The same antibodies may be involved in both diseases.
• Medications — Some treatments for Graves’ disease may cause symptoms similar to lupus or even cause drug-induced lupus.

If you’ve been diagnosed with TED and you’re concerned about developing lupus, talk to your doctor. They can help assess your risk and tell you what symptoms to look for.

5. A Few Symptoms Overlap Between Thyroid Eye Disease and Lupus

Lupus mostly has different symptoms than TED. The most common symptoms of lupus include:

• Swelling in the joints
• Stiff joints in the morning
• Hair loss
• Extreme fatigue
• Unexplained fevers
• Rashes, especially on the face
• Sensitivity to the sun
• Chest pain when breathing deeply
• Dizziness
• Headaches
• Swelling in the legs
• Swollen lymph nodes
• Mouth sores
• Memory problems or confusion

The only symptom that clearly overlaps between the TED and lupus is swelling around the eyes. Graves’ disease may also cause fatigue. It’s also connected to heat sensitivity, which could overlap with sun sensitivity. Outside of that, you will likely experience different symptoms for lupus than for TED or Graves’ disease.

6. A Rheumatologist Can Diagnose Lupus

To confirm if you have lupus, you’ll usually need to see a rheumatologist. If you’re already seeing a doctor for Graves’ disease and/or TED, start with them — they can help guide you through the diagnostic process. If needed, they can refer you to a rheumatologist with more expertise in that area.

Getting diagnosed with lupus usually starts with a full physical exam. Your doctor will also ask about your personal health history and your family health history. Then, they will likely order blood tests to look for specific changes that are common in people with lupus. In some cases, they may need to do a urine test, or even a skin or kidney biopsy, before they can diagnose you. Once they have all the information, they will be able to discuss whether or not you have lupus.

7. Your Health Care Provider Can Treat More Than One Autoimmune Condition

Managing one autoimmune condition is already challenging, so the idea of living with a second one can feel overwhelming. If you live with more than one autoimmune condition, like lupus and Graves’ disease, it’s important to work closely with your doctors. This ensures that treatments for one condition are safe and won’t interfere with treatments for the other.

There are a number of treatment options available for lupus, including anti-inflammatory medications, steroids, and immunosuppressants. Some people also find relief from diet changes, taking certain supplements, and certain types of body work. You and your rheumatology expert can work together to figure out what works for you.

If you’re taking medications to treat Graves’ disease, your doctor may adjust them if they seem to be contributing to lupus symptoms like joint pain or rashes. Some of these medications can cause such side effects, so you might feel better when you stop taking them. Luckily, there are other treatment options available for Graves’ disease, so together, you and your doctor can find one that works and doesn’t cause those symptoms. If you smoke, quitting may also help your eyes feel better.

The most important thing is to work closely with your doctor. They’ll be able to recommend treatments that are both effective and safe for you. Never start or stop any treatment without talking to your rheumatologist first. They are there to help you manage both conditions in the best way possible.

Talk With Others Who Understand

On TEDhealthteam, the social network for people living with thyroid eye disease and their loved ones, members ask questions, give advice, and share their stories with those who understand life with TED.

Have you been diagnosed with both lupus and thyroid eye disease? Share your experience in the comments below, or start a conversation by posting on your Activities page.