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Understanding Amyloidosis & Heart Failure

What is Amyloidosis?

Amyloidosis is a rare condition where abnormal proteins, called amyloid, misfold and build up in organs and tissues. When amyloid deposits in the heart, it can lead to serious problems with heart function and heart failure.

Amyloidosis happens when proteins fold incorrectly and clump together, forming deposits in tissues. These deposits can disrupt how organs work. Other organs that may be involved include the liver, nerves, kidneys, and digestive system — but the heart is often one of the most affected organs.

Early diagnosis is key to improving outcomes

Types of Amyloidosis

Type 1: AL (Light Chain) Amyloidosis

Caused by abnormal plasma cells producing light chains.

Can affect the heart, kidneys, nerves, and digestive system.

Type 2: ATTR (Transthyretin) Amyloidosis

Wild-Type ATTR:

  • Not inherited
  • Usually affects older adults
  • Often involves the heart

 

Hereditary ATTR (ATTRv):

  • Genetic form passed through families
  • Impacts the heart and nerves
  • Sometimes affects digestion

Type 3: AA (Secondary) Amyloidosis

Caused by chronic inflammation (e.g., rheumatoid arthritis, chronic infections).

Mainly affects the kidneys.

How does Amyloidosis Relate to Heart Failure?

When amyloid builds up in the heart muscle, it makes the heart stiff and thick. This is called restrictive cardiomyopathy. It becomes harder for the heart to fill with blood and pump it out, leading to heart failure symptoms like fatigue, swelling, and shortness of breath.

Signs and Symptoms to Watch For

  • Shortness of breath (especially during activity or lying flat)
  • Swelling in the legs, ankles, or abdomen
  • Fatigue and weakness
  • Irregular heartbeat or palpitations
  • Dizziness or fainting
  • Numbness or tingling (especially in hereditary forms)
  • Weight loss without trying
  • Easy bruising or enlarged tongue (more common in AL amyloidosis)

How Amyloidosis is Diagnosed

  • Blood and Urine Tests: Check for abnormal proteins and organ function.
  • Imaging Tests: Echocardiogram, cardiac MRI, or specialized nuclear scans.
  • Tissue Biopsy: Small sample of fat, bone marrow, or heart tissue analyzed for amyloid deposits.
  • Genetic Testing: To detect hereditary ATTR mutations.

A combination of tests is often needed for a clear diagnosis.

Before Approaching Treatment

Key Questions to Ask Yourself
  1. Could my heart failure symptoms be linked to amyloidosis?
  2. What tests are needed to confirm the diagnosis?
  3. What type of amyloidosis do I have?
  4. What treatment options are best for my type of amyloidosis?
  5. Should I consider genetic testing for myself or my family?
  6. How will my treatment plan be different because of amyloidosis?
  • TTR Protein Stabilizers: Help prevent misfolding of transthyretin protein in ATTR amyloidosis.
  • Gene Silencers: Reduce the production of abnormal transthyretin proteins.
  • Chemotherapy or Stem Cell Therapy: For AL amyloidosis to reduce abnormal plasma cells.
  • Fibril Disrupters (Still In Trials): Aims to clear existing amyloid deposits.
  • Supportive Heart Failure Medications: Diuretics that manage fluid buildup.

NOTE: Not all traditional heart failure medications are suitable for amyloidosis — specialized care is needed.

  • Follow a low-sodium, heart-healthy diet
  • Monitor weight daily for sudden changes
  • Pace activities and conserve energy
  • Track any new or worsening symptoms
  • Stay connected to specialized amyloidosis clinics or support networks
  • Maintain open communication with your healthcare team

Why Early Detection Matters

  • Helps prevent severe organ damage
  • Expands available treatment options
  • Improves quality of life and long-term survival
  • Provides the best chance for slowing disease progression

Need more information?

Visit the HeartLife Academy for comprehensive video resources about Amyloidosis and other cardiovascular health.

Check it out

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