Looking after your liver

If your liver is doing well there are things you can do to help look after it. If your liver is at risk from A1ATD, it is important to prevent any other damage.

• Eat a healthy diet and keep to a healthy weight
• Keep active

• Avoid alcohol or stick to the limits
• Don’t smoke

For more information and support on these changes visit the Living with A1ATD page.

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Treatment for complications and symptoms

A1ATD can sometimes lead to serious long term liver disease. This is called cirrhosis. Cirrhosis is a stage in many types of liver disease.

Find out more about cirrhosis

Treatment for cirrhosis is usually focused on managing complications. Not everyone with cirrhosis will have these complications. But if you are at risk, it is a good idea to find out about them so you know the signs. Getting help quickly can make them easier to manage.

You can find out about the complications of cirrhosis here.

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Liver transplant

If you have severe liver damage, you might be considered for a liver transplant.

The new liver will have the normal AAT genes and will make the normal version of the protein. So there will be no more liver damage, and the lungs will be properly protected.

But a liver transplant is a very big operation. Not everyone is able to have one. After a transplant you will need to take medicines for the rest of your life. These medicines affect your immune system.

Find out more about liver transplants

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Monitoring for alpha-1 antitrypsin deficiency in adults

If you have been diagnosed with A1ATD you should have checks on both your liver and your lungs. Even if you do not currently have symptoms in both of them.

Tests used for monitoring alpha-1 antitrypsin deficiency liver damage in adults

For your liver you will probably have:

• liver blood tests to check on how your liver is doing.
• A VCTE scan (FibroScan) to check for scarring.

A transient elastography scan is quick and doesn’t hurt. A probe is placed on your tummy, this sends waves into your liver. The results help doctors to work out how much scarring (fibrosis) there is.

Even if you have no liver problems, you should have a TE or other fibrosis test. Liver disease builds up over many years. The scan can pick up the signs of damage long before you get any symptoms.

Checks for liver cancer

AATD can raise your risk of a liver cancer known as hepatocellular carcinoma (HCC). People with the ZZ genotype are the most at risk. But it is still rare overall.

It is important to find HCC early. So if you have the ZZ genotype you might be offered regular ultrasound scans to check for it. This is called surveillance. You might also be offered this if you have the SZ genotype and liver damage.

If you are not sure if you should be having HCC surveillance, ask your liver medical team.

Find out more about HCC liver cancer surveillance

How often do I need monitoring?

How often you need to have monitoring will depend on:

• Your symptoms
• The amount of damage in your liver
• What genotype is causing your AATD 

Your medical team will work out the best monitoring schedule for you. If you and your liver are doing well, you might only need a check-up once every 5 years. If you have signs of liver damage this will be more often.

People with the ZZ genotype are usually followed up for life even if they stay well.

People with the SZ genotype who are well might be able to stop having follow up visits if there are no problems. For example, if they were tested after a family member was diagnosed but they have no symptoms themselves.

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