Being diagnosed with any type of amyloidosis can feel overwhelming, especially when you’re trying to understand the next steps for treatment. Since this condition is complex and rare, finding the right specialist is essential for getting an accurate diagnosis, appropriate care, and an effective treatment plan. Early diagnosis is key to slowing the progression of amyloidosis and preserving organ function.

Amyloidosis occurs when abnormal proteins, called amyloids, build up in your tissues and organs. One of the reasons amyloidosis is complex is that it can affect multiple organs. As a result, managing this condition may require several medical experts who specialize in different fields working together on your treatment plan.

While many specialists may be needed, it’s helpful to have one doctor who is your main point of contact and helps coordinate care. In this article, we’ll walk you through the types of medical professionals involved in treating amyloidosis. Whether you have just been diagnosed or are seeking a second opinion, this guide will help you find the right specialists for your treatment. Together, your health team can develop a comprehensive care plan to address your unique health needs.

Primary Care Physicians or General Practitioners

A primary care physician or general practitioner is usually the first provider you visit for any care that isn’t a health emergency. Primary care physicians are very important, as they are often the first to notice “red flag” symptoms that might suggest amyloidosis. Depending on your symptoms, they will refer you to a specialist. Even after you begin seeing specialists, primary care providers often play a key role in care coordination and providing referrals.

Hematologists

The most common form of amyloidosis is amyloid light-chain (AL) amyloidosis. This is also sometimes called primary amyloidosis. In AL amyloidosis, your body produces abnormal plasma cells, which typically come from your bone marrow. The abnormal plasma cells produce light-chain proteins that misfold and clump together in amyloid protein deposits in the organs. These deposits can affect your heart, liver, kidneys, and nerves.

Because these abnormal plasma cells are part of your blood, one of your specialists might be a hematologist (a doctor who specializes in blood disorders). If you have AL amyloidosis, your hematologist might lead your treatment. They will most likely collaborate closely with other specialists to treat your amyloidosis.

Cardiologists

Cardiologists specialize in treating various heart conditions. Many types of amyloidosis affect the heart, and so a cardiologist can play a crucial role in monitoring and managing your heart health. For example, your team’s cardiologist might use imaging scans to assess how well your heart functions. They may also prescribe medications for any cardiac symptoms.

If you have a type of amyloidosis that particularly targets the heart (like cardiac amyloidosis), your cardiologist might end up heading your treatment team. Cardiac amyloidosis can cause restrictive cardiomyopathy (a condition where the heart’s chambers stiffen over time). This occurs when amyloid proteins build up in the heart and increase thickness or stiffness of your heart’s walls. This makes it more difficult for blood to circulate throughout the body, raising the risk for heart failure. The effects of cardiac amyloidosis can also result in shortness of breath, fatigue, and swelling in the legs.

Nephrologists

Nephrologists specialize in diagnosing and treating kidney conditions. Amyloidosis can also affect the kidneys. Kidney damage from amyloidosis occurs when amyloids build up in and eventually damage the kidneys. This impairs the kidneys’ ability to filter blood, which is their main job.

Damage to the kidneys can cause a variety of symptoms (known as nephrotic syndrome). These symptoms can include protein leaking into your urine, high levels of cholesterol, and swelling in parts of your body.

If you have amyloidosis, your nephrologist can help manage any kidney-related symptoms, slow the progression of kidney damage, and determine if advanced treatments (such as dialysis or kidney transplant) may be needed.

Neurologists

Some forms of amyloidosis affect the nerves, causing numbness, pain, burning sensations, or weakness in hands and feet. Neurologists are highly trained medical doctors who focus on brain and nervous system disorders. They will help handle the neurologic symptoms of amyloidosis.

Gastroenterologists

Gastroenterologists specialize in conditions that affect the digestive system. Your digestive system includes the mouth, esophagus, stomach, liver, intestines, and other organs. In amyloidosis, abnormal proteins can build up in the layers of the gastrointestinal tract and the liver. This might make it more difficult for people with amyloidosis to process food and beverages. A gastroenterologist can help you make the best dietary decisions for your condition and see if further treatments (like medications or surgery) are needed.

Should You Seek Treatment at a Specialized Amyloidosis Center?

Early and precise diagnosis is important for managing amyloidosis as well as preventing further organ damage. Finding the right specialists who have experience treating amyloidosis can help you get the treatments you need. Often, you can find such doctors through specialized amyloidosis centers. These centers are able to provide coordinated care from a variety of specialists, and they have experience treating the most rare forms of amyloidosis. Amyloidosis centers often participate in cutting-edge research and clinical trials, meaning you might have access to the latest treatments.

How To Find an Amyloidosis Specialist or Center

Searching for amyloidosis specialists can be challenging. Consider these tips when looking for providers:

• Use My Amyloidosis Pathfinder, a tool provided by the Amyloidosis Research Consortium.
• Ask your current healthcare providers for referrals and suggestions.
• Join a local support group and ask for recommendations from other people living with amyloidosis.
• Research large academic medical centers in your state to find out if they have amyloidosis specialists.
• Contact your insurance provider to confirm coverage and find in-network specialists.

If you or a loved one has been diagnosed with amyloidosis, having a range of specialists on your medical team can make all the difference in your care and quality of life.

Talk With Others Who Understand

On MyAmyloidosisTeam, the social network for people with amyloidosis and their loved ones, members come together to ask questions, share advice, and connect with others who understand life with any type of amyloidosis.

Do you need help building an amyloidosis care team? Do you have tips for others? Share your experience in the comments below, or start a conversation by posting on your Activities page.