At Mayo Clinic, people with symptoms of cardiac amyloidosis receive diagnosis and treatment from a team of experts in the Cardiac Amyloidosis Clinic. This specialized care is available at Mayo Clinic in Arizona, Florida and Minnesota.
Cardiac amyloidosis is a rare and complex condition that is fatal and incurable. It can mimic other conditions and go undiagnosed for years. It's important to talk with heart doctors who understand the condition if you have related symptoms. These include shortness of breath, painful nerves, swelling, low blood pressure, chest pain, an unexplained stroke and an irregular heart rhythm.
What causes cardiac amyloidosis?
Amyloidosis occurs when the body produces unusual proteins that bind together to form amyloids. Amyloids can deposit in any tissue or organ, including the heart, kidneys, liver and nerves. When they form in the heart, the condition is called cardiac amyloidosis.
Cardiac amyloidosis can thicken the heart wall and disrupt heart function. It makes it harder for the heart to fill with blood between heartbeats. And this results in less blood being pumped with each beat. Cardiac amyloidosis also can affect the heart's electrical system, causing an irregular heart rhythm.
A team approach
At the Cardiac Amyloidosis Clinic, doctors who specialize in blood conditions (hematologists), the heart (cardiologists), imaging (radiologists), anatomic pathology, computational biology, neurology, nephrology and hypertension, and other areas work together to provide excellent, comprehensive care. The team's patient-centered approach helps ensure seamless care, an accurate diagnosis and treatment based on the exact type of protein affecting the heart.
It's likely that other staff will be involved in your care. These may include nurses, nurse practitioners and other medical professionals trained in treating people with cardiac amyloidosis. The goal of the team approach at Mayo Clinic is efficient, effective care focused on you.
Your care team typically helps you prevent or manage complications of your condition. You'll likely also receive a follow-up care plan that you can share with your primary care provider.
Expert diagnosis and advanced treatments
Successful treatment of cardiac amyloidosis depends on an early diagnosis and knowing which type of amyloid you have. Mayo Clinic specialists are recognized worldwide as experts in the disease and its treatment. They treat more than 2,500 people with amyloidosis each year. They are expert in identifying the protein variations that underlie each type of cardiac amyloidosis. And they use the latest tests and technology to seek the correct diagnosis and rule out other causes of your symptoms.
In seeking accurate answers, your doctor might have you undergo tests or procedures. These may include:
- Blood tests.
- Urine tests.
- Electrocardiogram (ECG or EKG).
- Echocardiogram.
- Biopsy — testing a sample of tissue in the lab.
- MRI of the heart, though this can't be used in people with kidney disease as it uses an injected contrast agent that can cause problems for damaged kidneys.
Mayo Clinic has led the way in developing innovative treatments for cardiac amyloidosis. Options are rapidly expanding, and new approaches are being developed for the different types of amyloid that affect the heart.
The best treatment for you depends on the underlying problem and the type of protein causing your condition. Treatment might include:
Research to improve diagnosis and treatment
Mayo Clinic physician-scientists and researchers have long been leaders in cardiac amyloidosis research. They are committed to improving treatment and reducing side effects. For example, they have published landmark studies on medicines that help manage transthyretin amyloidosis. Together the amyloid research team has:
- Discovered new forms of amyloidosis.
- Described and defined many disease mechanisms, biomarkers, treatments and diagnostic techniques.
- Developed assays.
- Secured many patents.
Talk with your doctor about advances in diagnosis and treatment that might help you. Ask if you might be eligible for clinical trials in cardiac amyloidosis. Some trials are open only to people being treated at Mayo Clinic.
See a list of publications about cardiac amyloidosis by Mayo Clinic authors on PubMed, a service of the National Library of Medicine.
Nationally recognized expertise
Mayo Clinic is top-ranked in more specialties than any other hospital and has been recognized as an Honor Roll member according to the U.S. News & World Report's 2023-2024 "Best Hospitals" rankings.
Mayo Clinic campuses are nationally recognized for expertise in cardiology and cardiovascular surgery:
- Mayo Clinic in Rochester, Minn., Mayo Clinic in Phoenix/Scottsdale, Ariz., and Mayo Clinic in Jacksonville, Fla., are ranked among the Best Hospitals for heart and heart surgery by U.S. News & World Report.
- Mayo Clinic Children's Center in Rochester is ranked the No. 1 hospital in Minnesota, and the five-state region of Iowa, Minnesota, North Dakota, South Dakota and Wisconsin, according to U.S. News & World Report's 2023–2024 "Best Children's Hospitals" rankings.