Know Your Numbers
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PBC - what do your numbers mean to you?

Become more involved in your PBC management
Know Your Numbers

When it comes to managing your PBC, you can make a real difference. Your doctor keeps track of several things to help monitor your PBC. Understanding what these are and how they affect you, allows you to become better connected with your PBC and leave your doctor’s appointments feeling more empowered.

Knowing your numbers is the best way to own your PBC. To learn more, watch our video.

How can your PBC be monitored?

PBC is diagnosed using a range of techniques which you may be already familiar with, including:

  • Antimitochondrial Antibody (AMA) tests
  • Blood tests - these may include liver biochemistry tests (commonly referred to as liver function tests or LFTs)
  • Liver biopsy

Liver tests, e.g Alk Phos or Bilirubin, track the health of your liver and the processes occurring within it. These tests are a key component of PBC diagnosis and may also be used by your doctor to monitor any changes in your disease.

What are your numbers?

Important PBC markers that are monitored by LFTs include alkaline phosphatase (ALP)bilirubin and albumin. A change in the levels of these three markers can highlight potential risk of disease progression.

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A rise in ALP levels indicates impaired bile flow in the liver

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Raised bilirubin can sometimes be an indicator of liver damage

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A drop in albumin levels is associated with liver disease which can lead to the scarring of liver tissues (fibrosis or cirrhosis)

What should you be looking for?

You should hopefully be undergoing regular liver tests so your doctor can monitor your results and make sure your numbers are as close to normal as possible.

The healthy ranges for ALP, bilirubin and albumin are considered to be:

ALP: 44-147 IU/L
Bilirubin: <17 µmol/L
Albumin 3.5-5.5 g/dL

If your numbers change or don't fall within these healthy ranges, you should speak to your doctor about your PBC management plan. However, it is important to remember that PBC is different for everyone and healthy ranges can vary.

Weight monitoring

Hopefully you will have been prescribed UDCA (also known as URSO, or ursodeoxycholic acid) to try and slow down the progress of your disease, which may be indicated by reduced levels of ALP.  Alongside monitoring ALP, bilirubin and albumin numbers when taking UDCA, it is also important to monitor your weight. Guidelines recommend 13-15mg/Kg per day so keeping track of any weight changes and modifying your dose accordingly ensures that you are receiving the maximum treatment benefit.

How can you track your numbers

The PBC Foundation has created an app designed to support your daily life with PBC and further empower you to become an informed partner in your medical care. The app uses a variety of tools to help you know your numbers, monitor your disease and support you on a range of emotional, psychological and physical self-management techniques.

To help you know your numbers, the app contains trackers for:

  • LFT results
  • Symptoms
  • Mood
  • Medicines and appointments

There are also several other useful resources available, including:

  • A PBC positive reflections diary
  • An up-to-date list of PBC events
  • The latest PBC news

Take an active approach to your PBC management by downloading the app today