Cardiac Amyloidosis

Symptoms of cardiac amyloidosis vary based on your type of amyloidosis and how far your condition has progressed. Most people who experience cardiac amyloidosis report symptoms of congestive heart failure and some other heart conditions. These include: 

• Fast or slow heartbeat
• Fluttering, pounding, or racing heartbeat
• Sensations of feeling smothered or suffocated when lying down
• Shortness of breath
• Sudden waking to gasp or catch your breath
• Swelling in the legs that does not go away

The protein build-up caused by amyloidosis can affect more than just the heart. If you have cardiac amyloidosis, you may experience symptoms of other conditions, including: 

• Bicep tendon rupture 
• Carpal tunnel 
• Gastrointestinal problems (including severe constipation or diarrhea)
• Neuropathy
• Spinal stenosis

A cardiac amyloidosis diagnosis often starts with an abnormal cardiac imaging test. Your doctor may notice signs of amyloidosis during a heart ultrasound (echocardiogram) or heart MRI (magnetic resonance imaging) test, including thickened heart muscle.

If doctors suspect cardiac amyloidosis, they will order a blood test to check for AL. If you have AL, our team will partner with Winship Cancer Institute of Emory University hematologists to conduct additional tests and begin treatment planning.

If blood tests find no signs of AL, your doctor will order a nuclear PYP (pyrophosphate) scan to check for ATTR.

During a nuclear PYP scan, doctors inject safe amounts of radioactive dye into your blood. This dye binds to the type of amyloid found in people with ATTR. Doctors then take pictures of the heart to see if the dye pools there, which indicates the presence of amyloid.

If you have ATTR, doctors will order genetic testing to determine if your ATTR is genetic or wild-type. This will help guide your treatment plan.