Tests for heart and circulatory conditions
Tests are used to diagnose a heart condition or to see how healthy your heart is. Find out what to expect from some of the most common tests.
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What is PCCD?
PCCD (sometimes called Lev-Lenegre’s Syndrome) is a rare heart condition that causes your heart to beat very slowly. It is inherited meaning it is passed down through families.
Over time, this can lead to heart block, because the heart's electrical system is working so slowly. Heart block means electrical signals cannot travel through your heart as they should.
PCCD can sometimes also cause abnormally fast, life-threatening rhythms by creating an electrical signal where there should not be one.
With proper treatment and management, many people with PCCD live normal lives.
Symptoms of PCCD
Some people with PCCD do not have any symptoms.
For people who do have symptoms, they can include:
Speak to your doctor if you notice any of these symptoms.
There’s also a small risk of sudden death if you have PCCD. If your heart rate becomes so slow that not enough blood flows around your body over a period of time, you could go into cardiac arrest.
If you see someone having a cardiac arrest, phone 999 immediately and start CPR.
Staying on top of your treatment and talking to your doctor if you notice any changes can help to stop this from happening.
A cardiac arrest usually happens without warning. If someone is in cardiac arrest, they collapse suddenly and:
- will be unconscious
- will be unresponsive and will not be breathing or breathing normally. Not breathing normally may mean they’re making gasping noises.
Causes of PCCD
PCCD is caused by a faulty gene that can be passed down through families. It means the sodium channels (these help send electrical signals) in the heart are not working properly, similar to those who have Brugada Syndrome.
If an immediate relative (parents, siblings or children) has been diagnosed with PCCD, you can speak with your GP about a referral to a specialist centre for inherited heart conditions.
PCCD diagnosis
It can be challenging for doctors to diagnose rare conditions such as PCCD. They will ask you about your family’s health history, as well as your own, and they may do a physical exam.
Other tests include:
- An ECG , which may show any problems with your heart’s electrical system.
- A 24-hour ECG. You may also be asked to have an ECG recording for a longer period to monitor changes.
- An electrophysiological (EP) study. Tiny tubes are put into an artery, usually through the top of your leg (also known as groin), and travel up to your heart where they can safely change the heart rhythm and check how your heart responds.
- Genetic testing. If an immediate member of your family already has PCCD and a faulty gene has been found, you may be able to have a blood test to see if you have the same faulty gene.
The Genetic Information Service (GIS) can give you information and support about inherited heart and circulatory conditions.
Are you finding it hard to get medical help?
We know that many of you are experiencing delays to treatment at this time, or have questions and concerns about getting medical help. We've created this set of information to help you with these issues.
- Where to get medical help if your appointment is delayed or cancelled
- Appointment and surgery delays
- When do you still need to get medical help?
- Making the most of phone and video appointments
PCCD treatment
There are 3 common treatment options for people with PCCD:
- Pacemaker. You will probably need to have a pacemaker fitted to stop a dangerously slow heart rate (bradycardia).
- Medicines. You may also need medicines to prevent fast heart rhythms called tachycardias, which pacemakers may not be able to stop.
- Implantable cardioverter defibrillator (ICD). For some people, your doctor may suggest you have a special type of ICD fitted (known as CRT-D), which also acts as a pacemaker. ICDs are designed to deliver a shock when your heart goes into a fast, life-threatening rhythm, to bring your heart rate back to normal.
Can I live a normal life with PCCD?
With treatment, such as a pacemaker or ICD, and regular appointments with your doctor, most people with PCCD lead normal and active lives.
However, you should be aware that:
- If you have a pacemaker or ICD fitted, you will be advised against playing contact sports.
- It may also affect the type of work you do, particularly if you work with magnetic or power tools.
- You may be told to cut back or avoid intense exercise if you suffer from fast heart rhythms (called tachycardias).
Speak to your specialist if you're worried about doing things to affect your condition. Many people tell us they like to bring a notepad of questions, ready for their appointments in case they forget to ask what they planned.
If you have further questions about inherited heart conditions, our Genetic Information Service can help you. Lines are open from 9am to 5pm Monday to Friday.
More information and support
- Contact our Heart Helpline to speak to one of our cardiac nurses.
- Speak to others in a similar situation by joining a support group or our online HealthUnlocked community.
- Sign up to our Heart Matters magazine and newsletter for free health and lifestyle information.
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Support
Being diagnosed, or living with a heart or circulatory condition can be overwhelming, but we're here to help.