Amyloidosis is a rare disease caused by the buildup of abnormal proteins (amyloids) in the organs and tissues. These amyloid deposits can cause diseases known collectively as amyloidoses. The symptoms caused by these deposits of abnormal proteins depend on the organ or organs involved, although nearly 90 percent of those with amyloidosis experience fatigue, edema (swelling), and weight loss.

Most people living with an amyloid disease lose weight, but individuals with amyloid deposits in the heart can experience weight gain when severe heart disease develops.

The Most Common Types of Amyloidosis

Several types of amyloidosis can affect the heart. Below are some of the most common forms of the disease:

• Amyloid light-chain (AL) amyloidosis
• AA amyloidosis
• Hereditary or familial amyloidosis
• Wild-type ATTR amyloidosis

Amyloid Light-Chain (AL) Amyloidosis

Also called primary amyloidosis, amyloid light-chain (AL) amyloidosis is the most common type of amyloidosis. In people with AL amyloidosis, the bone marrow produces extra pieces of antibodies called light chains. These light chains then circulate in the blood and can accumulate in organs, causing damage. AL amyloidosis is related to myeloma (a type of bone marrow cancer), and the two are often diagnosed together.

AA Amyloidosis

AA amyloidosis, also called secondary amyloidosis, is caused by serum amyloid A. Serum amyloid A is a protein produced during infection or inflammation. Although increased levels of this protein do not result in amyloid deposits in the short term, amyloid can accumulate over long periods of time. Chronic illnesses such as tuberculosis (bacterial lung infection) and rheumatoid arthritis (an inflammatory disease) can eventually lead to AA amyloidosis.

Hereditary Amyloidosis

Hereditary amyloidosis is also called familial ATTR amyloidosis because it is genetic. A genetic mutation results in a mutant form of the protein transthyretin (TTR). This mutated form of TTR is likely to form into amyloid fibrils. This type of amyloidosis usually affects the heart and nerves. Although it is still very serious, hereditary amyloidosis progresses more slowly than AL amyloidosis.

Wild-Type ATTR Amyloidosis

Wild-type ATTR amyloidosis (ATTRwt amyloidosis) is another form of amyloidosis caused by the TTR protein. Doctors used to call this disease senile systemic amyloidosis, but this term is no longer used. ATTRwt amyloidosis is similar to familial ATTR amyloidosis. In people with ATTRwt amyloidosis, however, the protein that is deposited as amyloids is the normal, nonmutated (wt) TTR protein.

Normal TTR is less likely to form amyloid deposits than the mutated version, but as people age, the protein can become less stable and misfold, forming amyloids. This means ATTRwt amyloidosis is usually only seen in those over 65 years of age.

Amyloidosis, Congestive Heart Failure, and Weight Gain

People with amyloidosis who develop amyloid deposits in the heart can experience weight gain. Amyloidosis that affects the heart can be caused by primary amyloidosis or a more systemic form of the disease.

The most common disease found in people with amyloidosis in the heart is congestive heart failure (CHF). In people with CHF, the heart muscle doesn’t pump blood as well as it should. As a result, fluids build up in the body.

In cardiac amyloidosis, fibrous amyloid deposits in the heart lead to the thickening of the cardiac walls, resulting in CHF. Blood vessels in and around the heart can also be affected.

Common symptoms of CHF include shortness of breath (which can be worse when lying down), increased heart rate, heart arrhythmias (irregular heartbeat), and swelling of the abdomen and legs. The buildup of fluids in the body can cause a person with CHF to experience rapid weight gain. For example, a weight gain of two to five pounds in 24 hours may indicate worsening heart failure and should be reported to your doctor.

Cardiac Amyloidosis Symptoms to Track

Because amyloidosis usually results in weight loss, if you gain weight, discuss this with your doctor right away. The weight gain is most likely due to fluid buildup resulting from amyloid-induced CHF, but only your health care provider can verify what is causing changes in your weight.

The American Heart Association recommends tracking changes in your symptoms to help monitor your heart function and detect any abnormalities. This information will help your health care team address any changes or problems before they get out of hand. Some important symptoms to track include:

• Daily weight — Make a note of rapid increases in your weight. Keeping a daily log of your weight can help reveal any drastic changes that occur.
• Swelling — Alert your doctor if you notice new or worsened swelling in your abdomen or legs.
• Blood pressure — Increased blood pressure needs to be addressed by your physician.
• Shortness of breath — Let your doctor know if you feel short of breath, especially if it worsens when lying down. A reduced ability to perform daily activities should also be noted.
• Heart rate —It is important to monitor your heart rate, as an increased heart rate can indicate that the heart is working harder than usual to pump blood.
• Confusion — Family members might notice this symptom first. Ask the people close to you to alert you or your doctor if you have been showing signs of impaired thinking or confusion.

Treatment for Amyloid-Induced Congestive Heart Failure

Cardiac amyloidosis is a serious disease with no known cure, although its progression can typically be slowed through medical treatment. The treatment a person receives depends on the type of protein involved in the amyloid deposits, but might include a combination of medication, pacemaker implantation, and lifestyle changes.

Medications

Certain medications may help ease symptoms of CHF and improve your quality of life. These medications include diuretics, which promote the production of urine, and drugs to help reduce swelling or control the heartbeat. People with ATTR amyloidosis may also be prescribed medication to turn off the TTR gene or regulate the TTR protein.

Pacemaker Implants

A pacemaker is a device that is implanted in the chest. It produces electrical impulses to help regulate the heartbeat.

Staying Healthy

Everyone needs a healthy diet and regular physical activity. It is especially important to practice these healthy habits if you are living with amyloidosis. Not only may these practices help you maintain a healthy weight, but they can also help your body better fight the disease. Ask your doctor for a referral to a physical therapist or a registered dietitian if you are not sure where to start your exercise or diet plans.

Find Your Team

On MyAmyloidosisTeam, the social network for people living with amyloidosis, you’ll meet other people with the condition. Here, members who understand life with amyloidosis come together to share support, advice, and stories from their daily lives. You can ask questions, share tips, and meet others who understand what you’re going through.

Have you experienced weight gain with amyloidosis? Was it related to congestive heart failure or something else? Share your experience and tips in the comments below or by posting on MyAmyloidosisTeam.