How to Manage Transthyretin Amyloid Cardiomyopathy (ATTR-CM) Symptoms

With transthyretin amyloid cardiomyopathy (ATTR-CM), symptoms can be directly related to your heart, like an irregular heartbeat. But because amyloid fibrils can deposit almost anywhere in your body – from your eyes to your spine to your feet – you may get a wide variety of symptoms. ATTR-CM treatment can ease many of them, but depending on your unique needs, you might get care from specialists besides your heart doctor. 

ATTR-CM can lead to heart failure. That’s when your heart can’t pump blood normally, so blood circulation is poor. This can force fluids into other parts of the body, like your legs, feet, and fingers, and cause swelling. Your doctor may tell you to limit salt and prescribe diuretic pills to stop you from retaining fluid. Wearing compression stockings or socks and elevating your feet often help.

Having fluid in the lungs from heart failure can leave you feeling winded, not only when you move but even when you rest. Don’t give up on exercise, because weak muscles will make it worse. Just pace yourself and build in more rest periods. If breathlessness makes you panicky, soothe yourself with mindfulness, listening to music, or taking slow, deep breaths. Sleep on a few pillows for better breathing at night.

When your heart can’t pump enough blood to deliver needed oxygen and nutrients throughout your body, you can feel tired much of the time. It sounds counterintuitive, but low-impact activities like walking, swimming, and riding a stationary bike – done in short chunks – can boost your stamina. Always stop to rest before you feel winded.

Reduced blood flow to your brain from heart failure can make you feel dizzy, lightheaded, or like the room is spinning around you. Another cause of these ATTR-CM symptoms is damage to nerves that control blood pressure. Some heart medicines can have this effect, too. Ask your doctor if you’d feel better on a different drug. If just getting up too fast brings on dizziness, take your time when shifting position.

If fluid backs up into your lungs, you may get a cough or wheezing, your body’s attempt to clear it. You may cough up white mucus, possibly streaked with blood. Your ATTR-CM treatment should help the cough go away, but some heart failure medicines can cause a dry cough.  If it continues, ask your doctor whether switching to a different drug would help. You might also need a test to check for pneumonia.

When your heart can’t pump blood as well as it should, it may start beating faster. You might feel your heart racing, skipping a beat, or throbbing. If you’re having arrhythmia, or a heartbeat that’s out of its normal rhythm, medication may help correct it. Your doctor may also tell you to avoid smoking, alcohol, and caffeine. Losing weight and keeping blood pressure and cholesterol levels in check are also important.

Reduced blood flow to the brain is linked to memory loss, bouts of confusion, and not being able to think the way you normally would. That can hurt your self-confidence and make it harder to take care of yourself. While heart failure medications may help with brain issues, tell your doctor about any trouble you’re having with mental skills or if you can’t remember all parts of your daily ATTR-CM treatment plan. Set reminders for yourself, and ask loved ones for help.

If the amyloid fibrils from ATTR-CM affect the nerves that control your bowels, you might get periods of constipation alternating with diarrhea. Poor circulation from heart failure can disrupt normal digestion and cause nausea, make you feel full too quickly, or kill your appetite. Experts don’t yet understand all the links between the heart and the gut, but eating a healthy high-fiber diet can help make you more regular.

You may feel unusual tingling or other sensations in your feet from damage to leg nerves. ATTR-CM treatment helps, but it may take a year or longer for this symptom to go away. In the meantime, using a foot massager with warm water at night can be relaxing. Over-the-counter lidocaine creams or patches and NSAIDs may ease discomfort. Your doctor can prescribe stronger medications like anti-seizure drugs to help with more serious pain.

ATTR-CM is linked to lumbar spinal stenosis, a narrowing of the lower spine that, in this case, is from amyloid fibrils. These deposits irritate nerve endings and cause pain in the lower back and possibly in the legs. For mild discomfort, try over-the-counter NSAIDs. Prescription NSAIDs, antidepressants, anti-seizure medications, and steroid shots may help. Physical therapy can build strength, improve posture and balance, and keep your spine flexible.

Amyloid fibrils can deposit in spaces within your wrists, irritating nerve endings in both hands. (For some, CTS is an early warning sign of ATTR-CM.) To ease discomfort, take frequent breaks when working with your hands and try over-the-counter NSAIDs. Be sure to work with a hand specialist who can prescribe splints, stronger medications, steroid shots, or possibly surgery. Get medical attention right away if you have numbness.

Amyloid fibrils can deposit almost anywhere in the eyes. ATTR-CM increases glaucoma risk. If the fibrils form in the vitreous, the gel in the back of the eye, you may see floaters and have a progressive loss of vision. Don’t wait for eye symptoms to appear. Schedule regular screenings with an ophthalmologist who can monitor your eye health. Finding problems early can help maintain your vision.