Cardiac Pyp Scan

Overview

A cardiac PYP scan is a special heart picture test. It uses a tiny, safe amount of a radioactive tracer, which is injected into a vein in your arm. The tracer travels to your heart, and a scanner takes pictures. The scan looks for a build-up of a protein called transthyretin in the heart muscle. When this protein settles in the heart, it can make the heart muscle stiffer and thicker. The medical name for this is ATTR cardiac amyloidosis (say: 'ay-tee-tee-are' — a condition where a protein builds up in the heart). Your doctor might suggest this scan if they think this could be happening to you.

The scan itself is used more and more often in heart clinics. It is a fairly common test in specialist heart services. The condition it looks for is also being found more often than in the past, partly because doctors now know what to look for.

The scan is mostly done in older adults. The condition it looks for is more common in men and in people over about 60. It is also more common in people of African or Afro-Caribbean background, and in people who have had carpal tunnel surgery (a hand operation for trapped nerves) or surgery for a narrowed spinal canal. It can sometimes run in families. Children are very rarely affected, so this scan is almost never needed in childhood.

Symptoms

Common symptoms

• Feeling short of breath when you walk, climb stairs, or lie flat
• Swelling in your ankles, legs, or belly
• Feeling very tired or easily worn out
• A heartbeat that feels fast, fluttering, or uneven
• Feeling light-headed or dizzy when you stand up
• Trouble sleeping flat because of breathlessness
• A numb or tingly feeling in your hands, or a history of carpal tunnel problems

Symptoms in children

• This scan is very rarely used in children. In the unusual case that a child has a heart muscle problem, a paediatric heart team would choose the right tests.
• Tell your child's doctor about any family history of heart muscle disease, so they can decide if any checks are needed.

Symptoms in older adults

• Breathlessness may come on slowly and be blamed on 'getting older' or on a chest problem
• Swelling in the legs that builds up over weeks
• Feeling unusually tired or less able to do everyday tasks
• A fluttering heartbeat, or a heartbeat that feels irregular
• Fainting or near-fainting spells — always worth mentioning to a doctor

Causes

Main causes

• A build-up of a protein called transthyretin in the heart muscle — this can happen with age (the 'wild-type' form) or because of a gene change you were born with (the 'hereditary' form)
• A thickened heart muscle seen on an ultrasound scan of the heart for which no clear cause has been found
• Heart failure where the heart pumps normally but is too stiff to fill properly
• Sometimes the scan is done to rule this condition out, and the result is normal — that is a useful answer too

Risk factors

• Being older, usually over 60
• Being male
• A family member with a known transthyretin gene change or heart muscle disease
• Past surgery for carpal tunnel syndrome, often years before heart symptoms
• A history of surgery for a narrowed spinal canal in the lower back
• African or Afro-Caribbean background, which is linked to a more common gene change in some families

When to see a doctor

See a doctor urgently if:

• Breathlessness that gets worse quickly, or that stops you lying flat
• Sudden swelling, or a rapid weight gain of a few kilograms over a few days
• Fainting, or feeling close to fainting
• A new, fast, or uneven heartbeat
• Chest pain — if it is severe or lasting, call your local emergency number

Book a routine appointment if:

• Breathlessness or tiredness that has been building up over weeks or months
• Swelling in your legs or ankles that does not go away
• Being told you have a thickened heart muscle or an unusual heart rhythm
• A family member has been found to have transthyretin amyloidosis
• You have had carpal tunnel surgery and now feel breathless or unusually tired

Diagnosis

Your doctor builds the picture from several pieces: your symptoms, your medical history, a physical exam, blood tests, and heart pictures such as an ultrasound scan of the heart. The cardiac PYP scan is one important piece. It shows whether the transthyretin protein has settled in your heart muscle. Blood tests are done first to rule out other protein problems that need different treatment. Sometimes a genetic test is added, especially if the condition runs in your family. If the scan and tests are clear, you will not usually need anything more invasive.

Tests that may be done

• Cardiac PYP scan — the tracer is injected, you wait a while, then pictures are taken with a special camera
• Blood tests, including checks for other proteins that can affect the heart
• Urine tests
• Echocardiogram — an ultrasound scan of your heart
• Cardiac MRI — a detailed scan using magnets, not radiation, in some cases
• Heart rhythm tracing (ECG) and a heart monitor if you have palpitations
• Genetic counselling and a gene test, if the hereditary form is suspected
• Very occasionally, a small sample of heart tissue (a biopsy) if the other tests are unclear

What to expect at your appointment

You will usually be able to eat and drink as normal on the day. A nurse or technician puts a small plastic tube (a cannula) into a vein in your arm and injects the tracer. It feels like a normal blood test. You then wait between one and three hours while the tracer moves around your body. You can usually read or rest during this time, and you may be asked to drink water and empty your bladder before the pictures. The scan itself takes around 10 to 20 minutes. You lie still on a padded table while a large camera moves around your chest. It does not hurt and you will not be closed in like an MRI. You can go home afterwards and drive yourself, unless your hospital tells you otherwise. Check with your care team about any medicines you take — some, such as certain heart or cold remedies, may need to be paused before the scan. The radiation dose is small and the tracer passes out of your body in your urine over about a day.

Treatment

The treatment depends completely on what the scan shows. If the scan is normal, your care team will look at other reasons for your symptoms. If the scan shows a protein build-up, you will usually be looked after by a specialist heart team. Treatment has two aims: easing your symptoms and slowing the build-up of protein. Many people do well with the treatments available today.

Self-care at home

• Weigh yourself at the same time each day and write it down — a quick weight gain can be an early sign of fluid building up
• Keep a simple note of your breathlessness and how far you can walk, so you can tell your care team what has changed
• Limit salt in your food — salt makes your body hold on to fluid
• Take your medicines exactly as prescribed, and ask your pharmacist before starting any new medicine, supplement, or herbal remedy
• Pace yourself and rest when you need to, rather than pushing through tiredness
• Ask your doctor or pharmacist about which vaccines are right for you, such as flu and pneumonia jabs
• Avoid getting dehydrated, especially in hot weather or during illness

Medical treatments

If the scan shows a protein build-up, your specialist team may offer medicines that aim to slow the protein from settling in the heart. They may also treat the heart itself: medicines that help your body pass extra fluid, medicines that steady your heart rhythm, and sometimes medicines that help your heart pump more effectively. Some people need a device fitted to protect against dangerous heart rhythms. Your team will also check for and treat other conditions that often come along, such as carpal tunnel problems or a narrowed spinal canal. Ask your care team to explain each medicine — what it is for, what to expect, and what side effects to watch for. Never change or stop a medicine without speaking to them first.

When is surgery considered?

Surgery is not usually needed for this condition. In some cases, a small device is fitted under the skin to protect the heart from dangerous rhythms. In a small number of people with severe heart failure, a heart transplant assessment may be discussed. Your specialist team will talk this through with you if it applies.

Living with this condition

Most people can carry on with their usual life, with some adjustments. Plan your days so that heavier tasks come when you have more energy. Keep your medicines in a routine and take them at the same times each day. Bring your weight record and any notes to your appointments — they help your team see the bigger picture. Tell your dentist and any other doctor you see that you have a heart condition.

Lifestyle tips

• Stay active in a way that suits you — short, regular walks are often better than one long effort
• Stop smoking if you smoke, and ask for help to do it
• Keep alcohol within the limits your doctor advises
• Get plenty of sleep and rest when your body asks for it
• Tell family or friends what to do if you feel unwell, so they can help quickly
• Keep a list of your medicines and your care team's contact details with you

Diet and exercise

A heart-friendly diet means plenty of vegetables, fruit, wholegrains, beans, and lean protein, with less salt and fewer processed foods. Salt is the one to watch most closely, because it makes fluid build-up worse. Read labels and cook from fresh where you can. For exercise, aim for gentle, regular movement such as walking, cycling, or swimming, building up slowly. Ask your care team or a physiotherapist about a safe starting point, especially if you have been breathless. Stop and rest if you feel chest pain, dizziness, or unusual breathlessness, and seek medical advice.

Mental health and emotional wellbeing

It is very normal to feel worried, low, or worn out when you are waiting for tests or living with a heart condition. Some people feel anxious about the scan itself, or about what the result might mean. Talking helps. Share how you feel with your doctor, nurse, or a trusted person. If low mood or worry is lasting more than a couple of weeks, or is affecting your sleep, appetite, or daily life, please tell your care team — support is available. If you ever feel you cannot cope, or have thoughts of harming yourself, contact your local crisis support service or your local emergency number straight away. You do not have to manage alone.

Prevention

The scan itself is a test, so there is nothing to prevent. The condition it looks for cannot be fully prevented. But some things help your heart stay as healthy as possible: keeping blood pressure and cholesterol in a healthy range, not smoking, staying active, eating well, and keeping to a healthy weight. If the hereditary form runs in your family, early genetic counselling and checks can help relatives find out their risk and get care early.

Vaccines

There is no vaccine for this condition. However, if you have a heart condition, your doctor may advise routine vaccinations such as flu and pneumonia jabs, because infections can put extra strain on the heart. Ask your doctor or pharmacist which ones are right for you.

Screening programmes

There is no routine screening for this condition in the general population. If you have a family member with the hereditary form, your specialist team may offer genetic counselling and a gene test, and heart checks for relatives who carry the same gene change. This lets people get advice and monitoring early, even before symptoms start.

Complications

If left untreated

• Fluid can build up in the legs, lungs, and belly, causing breathlessness and swelling
• The heart can become stiffer over time, making everyday activity harder
• Irregular heart rhythms can develop, which may need treatment
• Some people experience fainting or falls
• Pressure on nerves can cause problems such as carpal tunnel syndrome or a narrowed spinal canal

Long-term outlook

The outlook today is better than it has ever been. Doctors recognise this condition earlier, have a reliable scan to find it, and can offer treatments that slow it down and ease symptoms. Many people live well for years with the right care. If you are offered this scan, it is a sign that your team is being thorough — and a clear answer, whatever it is, puts you in a better position to get the support you need.

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