You may feel fine, but a recent heart test may suggest that you have cardiac sarcoidosis — an inflammatory condition that can affect multiple organs, including the heart.
The condition is rare, and the exact cause is unknown. But doctors believe that when inflammation is involved, your body’s immune system is attacking some unknown substance.
Often, inflammation goes away on its own. But when the heart is involved, treatment often is necessary, says pulmonologist Manuel Ribeiro Neto, MD.
If you’re noticing a fluttering in your chest, shortness of breath, or lightheadedness or experience episodes of passing out, don’t simply wait and hope they stop. Your doctor can help identify the exact problem and decide what treatment is right for you.
Inflammation of the heart doesn’t affect any particular age, gender or race more than others, Dr. Neto says. The condition can affect anyone, but it’s more likely if you have had sarcoidosis in other organs.
“We’re seeing a different spectrum of ages, gender and race with cardiac sarcoidosis,” he says. “However, most patients will have sarcoidosis present in other organs. They may have had it in other organs prior to when cardiac sarcoidosis presents.”
About 25 percent of patients with cardiac sarcoidosis have sarcoidosis only in the heart and not in other organs.
Sarcoidosis sometimes develops gradually and produces symptoms that last for years. Other times, symptoms appear suddenly and can progress quickly.
Many people with sarcoidosis have no symptoms, so the disease may be discovered only when you have a chest X-ray for another reason.
The main symptoms of cardiac sarcoidosis are:
These symptoms also show up with other heart conditions, so your doctor will need to rule out other possibilities first. Cardiac sarcoidosis is “a diagnosis of exclusion,” Dr. Neto says.
“If you already have sarcoidosis in other organs and are experiencing heart-related symptoms, such as palpitations or shortness of breath, bring this up in your visits with your physician,” Dr. Neto says.
A multidisciplinary approach to treatment is critical, says cardiologist Emer Joyce, MD, PhD.
Depending on the symptoms, specialists in sarcoidosis, advanced cardiac imaging, heart failure and cardiac electrophysiology should be involved, Dr. Joyce says.
“Those specialists are readily available at large medical centers such as Cleveland Clinic, and allows us to offer integrated care to our patients,” she says.
In most cases, especially where sarcoidosis in the heart is causing symptoms and problems, you likely will need treatment, Dr. Neto says. Options include: