What can you expect during a pyrophosphate (PYP) scan for amyloidosis? A cardiac PYP scan is a noninvasive test that helps doctors diagnose cardiac amyloidosis. Cardiac amyloidosis is a condition where abnormal protein deposits, called amyloid, build up in the heart.

If you’ve been referred for this test, it’s natural to have questions about the process. Here's what you need to know to prepare and to understand how this scan can help diagnose amyloidosis.

What Is Cardiac Amyloidosis?

There are different types of cardiac amyloidosis. Each has its own cause.

Transthyretin Amyloid Cardiomyopathy

Transthyretin amyloid cardiomyopathy (ATTR-CM) is caused by a protein called transthyretin (TTR). This protein becomes misshapen and collects in the heart. There are two forms of ATTR-CM: hereditary ATTR-CM and wild-type ATTR-CM, which is not inherited.

Amyloid Light-Chain Amyloidosis

Amyloid light-chain amyloidosis (AL amyloidosis) is caused by abnormal proteins called light chains, which are made by plasma cells in the bone marrow. These light chains misfold and collect in the heart and other organs. AL amyloidosis is often linked to bone marrow conditions like multiple myeloma.

What Are the Symptoms of Cardiac Amyloidosis?

Regardless of the type of cardiac amyloidosis, the buildup of amyloid proteins causes the heart walls to become stiff, making it difficult to pump blood effectively. This can lead to serious problems, including heart failure.

There are many possible symptoms of cardiac amyloidosis that can affect you from head to toe. Some examples include:

• Fatigue (tiredness that does not improve with rest)
• Shortness of breath
• Swelling from fluid buildup in the legs and ankles, or even the tongue
• Carpal tunnel syndrome
• Liver swelling
• Kidney inflammation and other problems
• Neuropathy (numbness or tingling) in your limbs

The Purpose of a PYP Scan

During a cardiac PYP scan, doctors use a special form of pyrophosphate called Tc99m-PYP. This substance contains a tiny amount of radioactive material called technetium, which helps doctors see if there are any amyloid deposits in your heart.

A PYP scan is not the only test used to help diagnose cardiac amyloidosis. Tests like echocardiography provide images of the heart’s structure and function. A cardiac MRI scan offers detailed views of the heart’s tissues, and a biopsy is a gold standard for definitive diagnosis.

Here’s why the PYP scan is done:

• Diagnosis — The scan helps doctors see if you have amyloid deposits in your heart. This can confirm if you have cardiac amyloidosis and allow you to begin treatment.
• Amyloid subtype identification — The scan helps your doctor determine the type of cardiac amyloidosis you have.
• Severity assessment — The PYP scan shows how much amyloid has built up in your heart. This helps doctors understand how serious your condition is, which helps guide your treatment plan.
• Treatment monitoring — The scan can also be used to see if treatment is working. By comparing the amount of amyloid before and after treatment, doctors can check your progress.

What To Expect During a Cardiac PYP Scan

If you've been scheduled for a cardiac PYP scan, it’s normal to have questions about the process. Here’s what you can expect from start to finish.

How Does the Procedure Work?

The procedure begins with a small amount of Tc99m-PYP (a radioactive substance) being injected into a vein in your arm. This is called an intravenous (IV) injection. The amount of radiation is minimal and considered safe.

As the Tc99m-PYP moves through your body, it collects in areas where amyloid proteins have built up in the heart. After a waiting period, it will be time for the scan. You will lie on your back on a table that slides into the scanner.

A SPECT-CT scan involves two kinds of two kinds of images:

• Single photon emission computed tomography (SPECT) — This shows where the tracer has gathered in your heart.
• Computed tomography (CT) — This creates clear, detailed images of your heart’s structures.

Together, these pictures give your doctor a 3D view of your heart, helping them diagnose and track your condition.

The whole process of a PYP scan usually takes about 1.5 to 2 hours. This includes getting ready, the injection, and the imaging. You may spend about 30 minutes inside the scanning device. The procedure is usually quiet and not as loud as an MRI.

What Happens After the Scan?

After the scan is done, you can go back to your normal activities right away. There are no special things you need to do. Most of the tracer will leave your body through your urine or stool. The rest will fade away over time naturally.

A special doctor, called a nuclear medicine doctor, will look at the images from your scan and write a report. This report will then be shared with your healthcare team, including your cardiologist (heart specialist). Your healthcare team will review the results. They will explain what the images show and what they mean for your health.

The PYP scan might not be the only test you need. Based on the results, your doctor may suggest other tests. These could include:

• An endomyocardial biopsy, where a small piece of heart tissue is checked for amyloid deposits
• Amyloid fibril typing, which helps determine the type of amyloid protein in your heart
• Serum free light-chain assay, a blood test that helps doctors to see whether you have ATTR-CM or AL amyloidosis

These additional tests can help doctors plan the best treatment for you.

How Can You Prepare?

If you are pregnant or breastfeeding, or you suspect you might be pregnant, be sure to inform the scheduling team in advance. Let your doctor know if you are taking any medications or supplements.

It's important to inform your healthcare provider if you feel uncomfortable in small or enclosed spaces (claustrophobia). The PYP scan requires you to lie still in a small, enclosed scanner, which can be tough if you get anxious in tight spaces.

Staying calm and still is important because moving around can blur the images. Blurry images might make it harder for doctors to diagnose your condition accurately.

If needed, your doctor may recommend a mild sedative (such as lorazepam or diazepam) to help you relax during the scan. Be sure to bring the sedative with you on the day of the procedure. The technologist will instruct you on the right time to take it.

Talk With Others Who Understand

On MyAmyloidosisTeam, you’ll meet other people with amyloidosis. Here, members who understand life with amyloidosis come together to share support, advice, and stories from their daily lives.

Are you living with cardiac amyloidosis? What has been your experience with getting a PYP scan or other diagnostic tests? Share your story in the comments below, or start a conversation by posting on your Activities page.