Amyloidosis happens when abnormal proteins, called amyloids, build up in tissues or organs. When these proteins build up in the heart, it’s called cardiac amyloidosis. This buildup can damage the heart and make it harder to pump blood.
This article explains the symptoms of cardiac amyloidosis. If you notice any of these symptoms, talk to your doctor. They can help find out whether amyloidosis or another condition is causing them.
Two types of amyloidosis are most likely to damage the heart: amyloid light-chain amyloidosis, or AL, and transthyretin amyloidosis, or ATTR. AL amyloidosis is also called primary amyloidosis.
The bone marrow is the spongy tissue in the center of the bones. It contains cells called plasma cells. These cells produce proteins called antibodies, which help defend the body against foreign or harmful substances.
Sometimes, plasma cells become cancerous. When this happens, they may make extra pieces of antibodies called light chains. These light chains can travel through the bloodstream and build up in different organs, causing damage.
The organs most commonly affected by AL amyloidosis include the:
The two types of ATTR amyloidosis are hereditary amyloidosis and wild-type amyloidosis.
Hereditary amyloidosis is also called familial amyloidosis. It is an inherited disorder that often affects the heart, kidneys, and nerves. Normally, the liver makes a protein called transthyretin, or TTR.
A person with hereditary ATTR produces a mutated (changed) form of TTR, which can lead to amyloidosis. Hereditary amyloidosis is serious, but it usually progresses more slowly than AL amyloidosis.
Wild-type amyloidosis used to be called senile amyloidosis. It happens when normal TTR protein forms amyloid for reasons that aren’t fully understood. According to Mayo Clinic, wild-type ATTR amyloidosis commonly affects the heart and usually develops in men over age 60.
A person may not have any symptoms of cardiac amyloidosis until the condition is more advanced. Not everyone will have every symptom. Symptoms depend on which organs are affected.
Normally, the heart chambers fill with blood between heartbeats. Amyloidosis can make it harder for the heart to fill with blood. As a result, the heart pumps out less blood with each beat, so less oxygen travels through the body.
This reduced blood flow can cause shortness of breath, even with little or no physical activity. You may also notice symptoms when lying flat on your back.
Amyloid proteins in the heart’s blood vessels can cause feelings of discomfort, heaviness, or angina (pressure in the chest), especially during physical activity.
Heart rhythm changes, such as palpitations, are another symptom. Palpitations may make you feel like your heart is pounding, fluttering, or beating faster than normal.
The buildup of amyloid proteins can make the heart stiff. This makes it harder for the heart to fill with blood between beats and pump enough blood to the body. Over time, this strain can lead to fluid buildup, causing the ankles, legs, and abdomen to swell.
Swelling can be a sign of heart failure, especially on the right side of the heart. Right-sided heart failure can happen with amyloidosis.
If you have cardiac amyloidosis, you may have other symptoms that don’t seem related to the heart.
Amyloidosis can cause macroglossia, or an enlarged tongue. Sometimes, the edges of the tongue may also look rippled.
The tongue may become tender and swollen, and swallowing may be difficult. If the tongue becomes very swollen, it may make breathing harder.
Nerve damage in amyloidosis can lead to peripheral neuropathy. This condition causes pain, weakness, numbness, or other abnormal sensations in the feet or hands. These sensations are sometimes described as a “pins and needles” feeling.
Carpal tunnel syndrome may be a symptom of cardiac amyloidosis. The same amyloid deposits that affect the heart can also build up in the nerves in the hand and wrist, causing carpal tunnel symptoms.
Carpal tunnel syndrome is more common in people with ATTR amyloidosis than in people with other forms of amyloidosis.
Some people with amyloidosis feel dizzy or lightheaded when they stand up after sitting. This is called orthostatic hypotension or postural hypotension. It can happen when amyloidosis affects the nerves that help control blood pressure.
The dizziness may get worse over time. In some cases, it can lead to fainting or falls.
Some people with cardiac amyloidosis may have bruising or bleeding. Amyloid purpura is one type of bruising that can happen with amyloidosis. This condition causes small blood vessels to burst, often around the eyes or eyelids.
There may be bruising in other areas of the face, the nails, and the neck. All of these can be early signs of cardiac amyloidosis.
Amyloidosis may affect nerves throughout the body, including nerves that help control bowel movements. Damage to these nerves may cause diarrhea or constipation.
Amyloidosis may cause weight loss of more than 10 pounds without trying. This weight loss often happens because of muscle loss.
Fluid buildup can make the weight loss harder to notice. Your healthcare provider may ask you to weigh yourself each day to track changes.
Amyloid deposits can affect the kidneys, making it harder for them to filter waste and keep protein in the blood. As a result, protein may leak into the urine.
You may find that you don’t urinate as much as you used to, or your urine may be foamy. Without treatment, kidney problems may get worse and could lead to kidney failure or dialysis.
Cardiac amyloidosis is serious, and treatment often involves several types of specialists. Your healthcare team may include cardiologists, gastroenterologists, hematologists, nephrologists, neurologists, and genetic counselors.
Currently, there is no cure for cardiac amyloidosis. However, treatments can address underlying problems, ease symptoms, and improve quality of life. They may also help slow amyloid buildup and protect the heart muscle. Your treatment depends on your type of amyloidosis.
Without treatment, symptoms of cardiac amyloidosis can get worse over time. As amyloid builds up, the heart walls may thicken. This can lead to more shortness of breath, swelling, and other signs of heart failure.
Cardiac amyloidosis can affect the heart and other parts of the body. Symptoms may include shortness of breath, swelling, dizziness, nerve pain, bruising, and changes in digestion or urination. Talk with your doctor if you notice new or worsening symptoms, so you can get the right diagnosis and treatment.
On MyAmyloidosisTeam, people share their experiences with amyloidosis, get advice, and find support from others who understand.
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I use a rollator walker when I
walk it has a seat for when I become short of breath. My breath is not short when I sit I recapture quicker sitting.I also have severe lumbar pain {stenosis}when… read more
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