Going to the doctor

For most people, the first step in being diagnosed with primary biliary cholangitis (PBC) is going to see their GP.

Often PBC symptoms are vague, so you may just have been feeling run down for a while. Your GP will ask about any symptoms you do have, how long you’ve had them and how they affect your day to day life. They will look at your medical history and may also ask whether there are any medical conditions known to run in your family.

Because symptoms can be vague, the GP will probably carry out a general examination. They may listen to your chest and ask you to lie on the couch while they feel your abdomen.

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First tests

Your GP may not be able to tell you what’s wrong at the first visit. They’ll need to organise some tests to give them a better idea of what’s causing you to feel under the weather.

You are most likely to have a series of general blood tests carried out. This will include:

• a full blood count, measuring your white blood cell, red blood cell and platelet levels
• measurement of other chemicals that are found in the blood, including blood glucose and calcium levels, for example
• tests to check your liver and kidneys
• measuring your thyroid hormone levels

Don’t be alarmed by the range of blood tests. It doesn’t necessarily mean that you have any kidney or thyroid problems for example. Your GP will be trying to narrow down the possible reasons for you feeling off colour.

Your GP may phone you or ask you to come into the surgery to discuss your results. If you have PBC, the liver blood tests will have shown some abnormal results. So your GP will make a referral for you to the hospital, to see a doctor who specialises in liver diseases.

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At the hospital

Your specialist will ask you to have some further tests. This will include blood tests and possibly scans.

Blood tests

Liver blood tests include measurement of two substances called alkaline phosphatase (ALP) and gamma-glutamyl transferase (GGT). If you have PBC, both of these levels will be higher than normal.

The raised ALP and GGT show that you have a problem with the flow of bile through your liver (cholestasis). But there can be other causes for this, such as gallstones. So the specialist will want you to have another blood test for autoantibodies.

Antibodies are proteins that are made by your immune system. They seek out ‘foreign’ proteins from bacteria and viruses, so are important in protecting you against infection.

An autoantibody is an antibody that reacts with your own body proteins. If your ALP and GGT levels are raised, having an autoantibody called antimitochondrial antibody (AMA) in your blood is a sign that you have PBC.

Find out about blood tests

Scans

Gallstones or other blockages in the biliary system can cause abnormal ALP and GGT liver blood results. Your specialist may ask you to have an abdominal ultrasound or a type of MRI scan called an MRCP to rule this out. Follow the links to find out more about these tests.

Find out about imaging tests

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What happens next?

Your specialist may give you a diagnosis of PBC based on the results of your blood tests and scans. Rarely, they may need to take a sample of liver tissue (a biopsy) to confirm the diagnosis. With PBC, this will show damage to the bile ducts in the sample. But if you have raised ALP and GGT, as well as autoantibodies, a biopsy isn’t usually necessary.

PBC is generally very slow to develop. As symptoms are so vague in the early stages, your specialist will want to carry out other tests to see how far the condition has developed. This is called staging.

There are other conditions that are more likely to develop in people who have PBC. So you are likely to have other tests to check for these. There is information about all these tests in the following page – Ongoing tests.

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