Do you feel like you don’t have any energy lately? Maybe you’ve started taking naps in the middle of the day or counting down the minutes until you can crawl into bed. If this sounds familiar, you may be dealing with fatigue related to your hereditary transthyretin amyloidosis (hATTR amyloidosis).

Fatigue can make it harder to get through the day and leaves you feeling drained. It’s important to get to the bottom of what’s causing your extreme tiredness so you can get back to your normal routine.

In this article, we’ll discuss how hATTR amyloidosis can cause fatigue and what you can do to combat it. We’ll also cover when to talk to your doctor about your amyloidosis treatment plan and how it can help.

What Causes Fatigue With hATTR Amyloidosis?

Hereditary ATTR amyloidosis is a rare disease caused by changes in the TTR gene. These changes create abnormal or misfolded TTR proteins that form clumps known as amyloid fibrils. When the fibrils become stuck in organs, they can damage different areas of the body.

Symptoms of hATTR amyloidosis include:

• Problems with the nervous system, such as peripheral neuropathy (nerve damage) and carpal tunnel syndrome
• Autonomic dysfunction, causing digestive problems and orthostatic hypotension (low blood pressure that causes dizziness after standing)
• Heart and kidney problems

It’s not discussed as often, but you may also experience fatigue while living with hATTR amyloidosis. The organ damage caused by amyloid fibrils can lead to other health conditions, causing fatigue and interfering with sleep. Here, we’ll discuss potential causes of your extreme tiredness.

Heart Problems

In hATTR amyloidosis, amyloid fibrils can become stuck in the heart. Known as cardiac amyloidosis, this disease makes the heart muscle stiffer than normal. The heart can’t pump as much blood as it normally does — leading to congestive heart failure.

People with congestive heart failure can experience extreme fatigue because their tissues aren’t getting enough oxygen. You might notice that activities you once could do become extremely difficult and wear you out easily.

Congestive heart failure can also interfere with your sleep. Studies from the journal Sleep show that many people with heart failure have trouble falling asleep and staying asleep. Without enough rest, you’ll wake up feeling much more fatigued in the morning.

Other signs of cardiomyopathies (heart problems) with hATTR amyloidosis to look out for include:

• Shortness of breath
• Edema (fluid buildup) and swelling in your feet, legs, and hands
• Chest pain
• Weight loss
• Palpitations (racing heartbeat)
• Arrhythmias (abnormal heart rhythms)

Kidney Problems

Your kidneys constantly work to filter toxins, waste products, and water out of your blood. This waste is then removed from your body as urine. When your kidneys aren’t functioning properly, it can take a toll on your health.

Clumps of abnormal proteins can also form amyloid deposits in the kidneys in hATTR amyloidosis. The deposits damage the delicate filters within the kidneys, making it harder to filter your blood. As toxins and waste products build up in your bloodstream, you’ll start feeling weak and fatigued. Untreated kidney damage can eventually progress into kidney disease and even kidney failure.

Some people with kidney disease also have trouble sleeping. This is because toxin buildup in the bloodstream can interfere with sleep. If you’re feeling fatigued throughout the day or having trouble falling asleep at night, your kidneys may be to blame.

Other signs of kidney disease to look out for while living with hATTR amyloidosis include:

• Frequent urination, especially at night
• Loss of appetite
• Foamy urine (a sign of protein in your urine indicating kidney damage)
• Dry or itchy skin
• Edema
• Muscle cramps

Anemia

Your red blood cells (RBCs) transport oxygen throughout your body. They use iron and the protein hemoglobin to carry oxygen molecules to your body’s cells and tissues. When you have low iron levels, you can develop a condition known as anemia.

Studies show that people with hATTR amyloidosis — specifically cardiac amyloidosis — tend to have low iron levels. Researchers have found that people with chronic (ongoing) heart failure not caused by amyloidosis also usually have low iron levels.

Anemia and heart failure are both associated with fatigue. This is because the cells of your body aren't getting enough oxygen to fuel their activities. Other signs of anemia include:

• Pale skin
• Headaches
• Brittle nails
• Feeling dizzy or lightheaded
• Elevated heart rate
• Shortness of breath

Some Medications May Contribute to Fatigue

All medications come with side effects, but some may make you more fatigued than others. Check with your health care provider or pharmacist about your current treatment plan and which medications may be contributing to your symptoms.

According to Harvard Health Publishing, medications known to increase sleepiness include:

• Medications used to treat high blood pressure, like beta-blockers
• Antihistamines (allergy medications)
• Antidepressants
• Antianxiety medications
• Antinausea medications
• Anticonvulsants (anti-seizure medications)
• Prescription pain medications such as opioids

If you think your medications may be causing fatigue and interfering with your daily activities, talk to your doctor. They can adjust the dose or suggest another treatment.

Taking Care of Your Body and Mind

Living with a progressive disease like hATTR amyloidosis can take a toll on your physical and mental health. It’s normal to experience some fatigue in your daily life, but you may find yourself struggling with long-term exhaustion.

Talk with your health care provider if you feel you need support for your physical and/or mental health. Some studies suggest that talk therapy helps to treat fatigue. Ask about a referral to a therapist at your next appointment if you’re interested. They’ll provide strategies for managing stress to improve your fatigue.

Together, you can find a treatment plan that works best for you to help combat fatigue and live a longer, healthier life with hATTR amyloidosis.

Talk to Your Doctor About hATTR Amyloidosis Treatments

Treating fatigue is more than getting more sleep — it’s important to address the underlying causes driving your symptoms. If you think your hATTR amyloidosis is the culprit behind your fatigue, your doctor can go over your treatment options.

There are several therapies approved by the U.S. Food and Drug Administration (FDA) to help slow disease progression and ease your symptoms. Examples include TTR stabilizers and gene-silencing therapies.

Tips for Conserving Energy and Combatting Fatigue

On days when your energy battery is running low, you can take extra steps to help get you through the day. Don’t try to push yourself past what your body can do. Be sure to pace yourself and take breaks when needed.

Here are some tips to try to conserve your energy throughout the day:

• Try sitting instead of standing for certain activities like washing the dishes or folding laundry.
• Make sure you’re eating and drinking enough water throughout the day.
• Take short naps or rest periods as needed — the recommended length is 10 to 30 minutes.
• Give yourself a certain number of tasks to do within a day that you have the energy for — don’t try to fight your fatigue.
• Limit your caffeine intake for a few weeks and see if your fatigue improves.

Find Your Team

MyAmyloidosisTeam is the social media network for people with amyloidosis and their loved ones. Members come together to ask questions, give advice, and share their experiences with others who understand life with amyloidosis.

Have you experienced fatigue while living with hereditary transthyretin amyloidosis? Have you found ways to manage it? Leave a note in the comments below, or start a conversation by posting on your Activities page.