ATTR-CM is a type of amyloidosis that affects the heart. In ATTR-CM, amyloid deposits build up in the heart muscle, causing the heart to become stiff and less able to pump blood to other parts of the body. Over time, this can lead to heart conditions, including an abnormal heartbeat and heart failure (a condition where, over time, the heart becomes less effective in helping blood move properly through the body).

“Heart failure just means that the heart is tired; it happens very slowly with the increase of amyloid burden in the heart.”

Professor Thibaud Damy, Professor of Cardiology

Common symptoms of ATTR-CM include:

• Shortness of breath
• Tiredness
• Weakness
• Swelling of the legs
• Irregular heartbeat
• Dizziness

People living with ATTR-CM may also experience additional cardiac symptoms, such as carpal tunnel syndrome (squeezed nerves in your wrist) or spinal stenosis (narrowing of nerves in your spinal cord).

Symptoms are not the same for everyone with ATTR-CM (for example, they can look different between women and men). You should monitor your symptoms so you can tell your doctor how they have changed over time, and whether any new symptoms have arisen. Consider writing them down, for example, using a logbook or symptom tracker available online.

ATTR-CM can be passed down the family tree or develop later in life. Find out more about the ways ATTR-CM can develop here. 

“The symptoms of ATTR-CM are quite common and generic, so they can be mistaken for ageing, especially since the disease tends to affect people from a certain age onward.”

Moderator of online support group

ATTR-PN is a type of amyloidosis that affects mainly the nerves in the hands and feet but may include other parts of the body. In ATTR-PN, amyloid deposits collect around the peripheral nerves. These nerves are like wires that carry information between the brain and spinal cord and the rest of the body, allowing you to respond to your environment (for example, moving your hand away from a hot object). The build-up of amyloid in peripheral nerves can cause damage, which means they gradually lose their ability to work properly.

Common symptoms of ATTR-PN include:

• Numbness, tingling, or burning pain in the hands and feet
• Loss of sensation (not feeling heat, cold, or pain properly)
• Muscle weakness in the legs and arms
• Balance problems or difficulty walking

Unlike ATTR-CM, ATTR-PN is caused by an affected gene that is passed down the family tree, meaning it is always a hereditary disease.

So the symptoms of transthyretin cardiomyopathy are quite large, in fact, because this is a multi-systemic disease. This disease starts with the infiltrations of tendons and also bones, which means that the first symptoms are: carpal tunnel syndrome, lumbar spinal stenosis, arthrosis, and also deafness. So it’s very important to think that if you have these several symptoms of that, you may develop amyloidosis.

The things that now many patients are diagnosed at the late stage of the disease, which means that the infiltration starts in the heart and so that patients are diagnosed at the start of heart failure symptoms. So, these symptoms are: breathlessness, leg oedema, and if you have these symptoms with this history of osteoarticular involvement, then you might have amyloidosis and you need to have a check-up.