You may experience shortness of breath — what doctors call dyspnea — for a variety of reasons. Shortness of breath is often due to temporary causes like exercise.

But sometimes dyspnea can develop from serious health conditions like transthyretin amyloidosis (ATTR). When transthyretin amyloidosis affects the heart, it can lead to symptoms like shortness of breath.

Below, we’ll discuss what you should know about ATTR and shortness of breath, including what’s normal and what requires immediate medical care.

How ATTR Can Cause Shortness of Breath

In ATTR, transthyretin proteins made by the liver collect in different parts of the body, resulting in tissue damage. When these deposits form in the heart, they can lead to transthyretin amyloid cardiomyopathy (ATTR-CM), which damages the heart muscle.

When amyloid fibrils (abnormal protein clumps) build up within the tissues of the heart, they take the place of regular, healthy cells within the heart. Over time, this protein buildup leads to changes in the heart’s structure, causing the heart muscle to stiffen and its walls to thicken.

The heart needs to work with the lungs to deliver blood and oxygen to the body’s tissues. But these changes make it hard for the heart to relax, fill up with blood between heartbeats, and pump enough blood out to the body.

When your heart or lungs can’t work properly, your blood can end up having less oxygen or more carbon dioxide than is normal. These imbalances signal to your body that it needs more oxygen, making you feel out of breath and causing you to breathe harder.

ATTR-CM causes less blood to circulate around the body, including to and from the lungs. This can lead to fluid buildup and swelling in the abdomen, lower body, and neck. If blood can’t circulate properly, it can start to back up in different areas.

When this happens in the blood vessels of the lungs, it can cause fluid to leak into lung tissue, making it harder to breathe, especially when lying down. You may also cough often if you have fluid built up in your lungs, which can contribute to feeling out of breath.

Protein deposits can also affect how your heart’s electrical system works. This can change your heart rhythm, leading to arrhythmias (irregular heartbeat rhythms). The heart can’t pump as efficiently during arrhythmias like atrial fibrillation, which can cause shortness of breath.

Other Possible Causes of Breathing Problems

There are many factors that can cause breathing problems. Even if you have ATTR-CM, it may not be 100 percent to blame for your shortness of breath. Having other conditions can also contribute to your breathing issues.

Other possible causes of breathing problems include:

• Airway conditions — Conditions like asthma, respiratory viruses and infections, and seasonal allergies can contribute to breathing issues.
• Exercise — Not getting enough regular exercise can lead to dyspnea when you do engage in physical activity, even when your heart is healthy.
• Inflammation — Inflammation in or near the heart or lungs can interfere with blood oxygen levels and breathing.
• Lung conditions — Conditions like chronic obstructive pulmonary disease (COPD), pneumonia, high blood pressure or fluid within the lungs, lung scarring, lung cancer, and blood clots in the lungs can make you feel short of breath.
• Medications — Certain drugs used to treat high cholesterol and high blood pressure as well as certain blood thinners can cause dyspnea as a side effect.
• Other medical conditions — Anemia, anxiety, certain injuries, obesity, and sleep apnea can all lead to shortness of breath.

If you’re experiencing dyspnea, it’s important to see your healthcare provider. Your doctor can evaluate you and determine whether any conditions other than ATTR are contributing to your shortness of breath.

How Doctors Evaluate Shortness of Breath in ATTR

It’s important to see your doctor if you have ATTR-CM and experience shortness of breath. Often, a healthcare professional will evaluate you by first performing a physical exam.

This exam will give them a chance to listen to your lungs as you breathe and pick up on any abnormal sounds. They’ll also measure your blood pressure and blood oxygen levels.

In some cases, a provider may recommend more testing to help identify the cause of your dyspnea. Other tests that may be used to assess breathing issues include:

• Blood tests — Blood work may be used to look for anemia or other conditions.
• Exercise tests — These tests measure how much oxygen your body takes in and how much carbon dioxide it releases during physical activity.
• Imaging tests — X-rays and computed tomography scans of the chest can provide a detailed view of your lungs and show any abnormalities.
• Lung function tests — These tests show how well you’re breathing when not engaged in physical activity.

If you’ve only been diagnosed with ATTR, you may be assessed for ATTR-CM. This is especially likely if you experience dyspnea along with other heart failure symptoms, such as swelling, fainting, and heart palpitations. Your provider may refer you to a cardiologist (doctor who specializes in heart problems) for an evaluation.

Testing for ATTR-CM may include an echocardiogram, heart biopsy, electrocardiogram to assess the heart’s electrical activity, genetic testing, or PYP scan to detect protein deposits in the heart. The presence of other conditions that commonly affect those with ATTR-CM — carpal tunnel syndrome and lumbar spinal stenosis — can also point to this diagnosis.

Ways To Manage Day-To-Day Breathlessness

Feeling short of breath often can have a significant impact on your quality of life. Although it can be challenging to manage, there are steps you can take to help yourself.

Ways to help reduce breathlessness include:

• Reduce your sodium (salt) intake — To reduce fluid buildup, consume less salt. Check food labels for sodium content and ask for your food to be made with reduced salt when it’s prepared by someone else.
• Eat healthy — Follow a heart-healthy diet that prioritizes fresh, unprocessed foods like fruits, vegetables, lean proteins like fish, and plant-based proteins like nuts. Limit food and drinks with added sugar, high levels of saturated fat, and alcohol to promote overall wellness.
• Get daily exercise — Find a type of physical activity you can safely do each day, such as walking. Your doctor may recommend you work with a physical therapist to improve your stamina.
• Prop your head up while you sleep — Adding extra pillows under your head and shoulders may help ease shortness of breath while lying down.
• Take breaks — If you feel out of breath doing a task, stop to rest and come back to what you were doing later.
• Take your medications — Always take your prescribed medications to keep your heart and lungs working as well as possible.

When To Seek Medical Care for Breathing Changes

Shortness of breath is a common symptom of ATTR-CM. But in some cases, dyspnea can be a life-threatening emergency. Call 911 or seek urgent medical care if you experience shortness of breath with:

• Sudden onset, especially if it’s severe
• Unusual chest pain, pressure, or heaviness or normal chest sensations that don’t resolve as they usually do
• Abnormal heart rate, such as heartbeats that are too fast
• High fever
• Wheezing
• Bluish lips, skin, or nails
• New swelling in the feet or ankles

Talk to your healthcare team about any breathing changes you notice, even if they’re small. Your doctor can evaluate your lungs and heart to identify whether your issues stem from ATTR and help you manage your symptoms. If shortness of breath is due to another condition, your provider can recommend treatment options to help you breathe easier.

Join the Conversation

On MyAmyloidosisTeam, people share their experiences with amyloidosis, get advice, and find support from others who understand.

Have you experienced shortness of breath with ATTR-CM? Let others know in the comments below.