Unintentional weight loss is a common and frustrating challenge for people living with ATTR-PN (transthyretin amyloid polyneuropathy). This weight loss can affect your energy levels, strength, and overall quality of life, making daily activities more difficult.

As one MyAmyloidosisTeam member wrote, “I was 137 pounds and lost over 40 pounds. A year into this, and I’m still underweight but stable. Now I’m eating a little better and working with a nutritionist. Hoping to gain some weight back.”

Weight loss related to ATTR-PN may be caused by a combination of digestive problems, muscle loss, and difficulty absorbing nutrients. We’ll explore the connection between ATTR-PN and weight loss, explain what you can do about it, and share more experiences from MyAmyloidosisTeam members.

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“I was 137 pounds and lost over 40 pounds. A year into this, I’m still underweight but stable. Now I’m eating a little better and working with a nutritionist.”

— A MyAmyloidosisTeam member

Why Does ATTR-PN Cause Weight Loss?

Around 30 percent of people with ATTR-PN experience weight loss. ATTR-PN is a form of amyloidosis, a condition that occurs when misfolded proteins build up in different parts of the body and cause damage.

ATTR-PN attacks your peripheral nerves. These nerves connect your brain and spinal cord to the rest of your body. It also affects your autonomic nerves, which control automatic functions such as digestion. Amyloid deposits may damage these nerves and affect muscle function.

Digestive Symptoms

Amyloid deposits can damage the nerves that control the movement of food through the digestive tract. This can slow down stomach emptying and bowel movements. As a result, it can be harder to eat and absorb enough calories.

ATTR-PN is almost always inherited, which means it is passed down in families. This inherited form is called hereditary ATTR amyloidosis (hATTR). Wild-type ATTR (wtATTR) usually affects the heart and causes ATTR cardiomyopathy (ATTR-CM).

People with wtATTR may have mild nerve-related symptoms, such as carpal tunnel syndrome, which can cause pain, numbness, or tingling in the hand and wrist. However, they rarely develop the severe, worsening nerve damage or major digestive problems that can happen with hATTR. Digestive problems are more common in the hereditary form and affect more than half of people with hereditary ATTR-PN.

Some of the most common digestive problems include:

• Feeling full
• Nausea or vomiting
• Diarrhea or constipation
• Incontinence

“My big problem is my digestive system,” one MyAmyloidosisTeam member shared. “I can deal with the other stuff, but living my life around the toilet is very frustrating! 😡”

— A MyAmyloidosisTeam member

Malabsorption

Some people with ATTR-PN develop malabsorption. This means the digestive system cannot properly absorb the nutrients from food.

“Malnutrition is causing my husband tremendous loss of strength,” one caregiver on MyAmyloidosisTeam shared. “It appears that his stomach gets full after small amounts of food, and that his body is not absorbing nutrients. Has anyone had any experience with this?”

When food moves too slowly, normal gut bacteria may build up in the small intestine. This condition is called small intestinal bacterial overgrowth. The body may also have trouble absorbing bile acids, which help break down fat. Trouble absorbing bile acids can cause digestive symptoms because the body cannot properly break down fat in food.

If you’ve had a liver transplant, you may also have diarrhea or trouble absorbing fat.

Progressive Neuropathy and Muscle Loss

Progressive neuropathy affects the nerves that control movement. As ATTR-PN progresses, damaged nerves may stop sending the signals your muscles need to work. The loss of these signals can lead to peripheral neuropathy (nerve damage), weakness, balance problems, and muscle loss.

ATTR-PN can also lead to a loss of lean body mass. Muscle weakness and trouble moving around can increase fatigue and make everyday tasks, such as grocery shopping and meal preparation, more difficult.

What To Do if You’re Losing Weight With ATTR-PN

Unintentional weight loss with ATTR-PN can be difficult, but the right support and strategies can help. Working closely with your healthcare team, treating symptoms, and making small daily changes to how you eat can improve your overall health.

Try Simple Nutrition Strategies

When you’re losing weight, it’s important to eat enough calories and get enough nutrients. However, large meals may make digestion more difficult. Try eating smaller meals and snacks throughout the day, and add healthy, high-calorie foods when possible.

Because fat can sometimes be difficult for an amyloid-damaged gut to absorb, introduce healthy fats in small amounts at first to make sure they don’t trigger diarrhea. It can be helpful to focus on nutrient-dense foods that provide vitamins, minerals, and calories in small portions. Some healthy options to add to your meals or snacks include:

• Nuts and nut butter
• Avocado
• Healthy oils
• Olives

You may want to carry healthy, nonperishable foods, such as trail mix and dried fruit. This can help make sure you have something to eat when you need more energy.

Discuss How ATTR Medication May Help With Weight Loss

Your ATTR-PN physician will likely prescribe medication as part of your treatment plan. TTR stabilizers help keep the TTR protein from breaking apart and forming amyloid deposits. Gene silencers reduce the amount of TTR protein your body makes. These treatments may help slow nerve damage and disease progression and reduce unintentional weight loss.

When starting any new medication, track your symptoms and share them with your healthcare team. Get emergency medical help if you have life-threatening symptoms, such as shortness of breath, an irregular heartbeat, or severe or ongoing vomiting.

Talk to Your Healthcare Team

Talk to your amyloidosis specialist about your weight loss concerns. They may refer you to a registered dietitian nutritionist who can help with meal planning and recommend foods and nutrients that may help prevent malnutrition and address digestive problems.

Join the Conversation

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

Do you struggle with your weight and want to connect with others facing similar challenges? Let others know in the comments below.