Cryptogenic cirrhosis, or cryptogenic liver disease, is when the liver is scarred and damaged but the cause is unknown.

The term “cirrhosis” means scarring of the liver. “Cryptogenic” means the condition is of unknown origin.

Most often, cirrhosis develops from heavy alcohol use or hepatitis. But if you receive a diagnosis of cryptogenic cirrhosis, this means your doctor tested and ruled out all possible causes of cirrhosis.

Cryptogenic cirrhosis accounts for 5% to 30% of all cirrhosis cases.

Read on to learn about the symptoms, causes, diagnosis, treatment, and outlook of cryptogenic cirrhosis, as well as what it’s like to live with this condition.

Cryptogenic cirrhosis vs. cirrhosis

Overall, symptoms and complications of cryptogenic cirrhosis are similar to those of other types of cirrhosis. The main difference is whom this condition affects most frequently.

According to a 2017 study that compared cryptogenic cirrhosis with cirrhosis caused by the hepatitis C virus (HCV), the main differences between these conditions were as follows:

  • Cryptogenic cirrhosis affected more females. HCV cirrhosis affected more males.
  • People with cryptogenic cirrhosis were also more likely to have metabolic syndrome and other health conditions than people with HCV cirrhosis.
  • People with cryptogenic cirrhosis were also more likely to have overweight or obesity than people with HCV cirrhosis.

Symptoms of cryptogenic cirrhosis are similar to those of other types of cirrhosis.

At first, symptoms may not be apparent. As the condition progresses, you may experience:

Although the causes of cryptogenic cirrhosis are unknown by definition, certain conditions have been linked to this disease.

A condition frequently associated with cryptogenic cirrhosis is called nonalcoholic fatty liver disease (NAFLD). NAFLD develops from the buildup of fat in the liver. It is not related to alcohol use.

NAFLD doesn’t typically have any symptoms and, therefore, can be easy to miss. Undiagnosed NAFLD can lead to cryptogenic cirrhosis.

Other potential causes of cryptogenic cirrhosis include:

Risk factors for cryptogenic cirrhosis include:

  • being assigned female at birth
  • being older than 60 years
  • having metabolic syndrome or related health conditions
  • having overweight or obesity

To diagnose cryptogenic cirrhosis, your doctor will first establish that you have cirrhosis. To do that, they will likely order a liver biopsy or imaging tests, like a liver MRI.

Your doctor will then run multiple tests to determine the cause of your cirrhosis. If these tests come back negative, they will diagnose cryptogenic cirrhosis.

Treatment of cryptogenic cirrhosis typically focuses on managing symptoms and preventing complications. It may include:

If you have cryptogenic cirrhosis, your outlook depends on the following:

  • severity of your condition
  • whether you have complications
  • whether you’ve had a liver transplant

According to a 2019 review, the overall 3-year survival rate for people with cryptogenic cirrhosis who received a liver transplant is around 79%. It’s lower for people without a liver transplant.

Living with cryptogenic cirrhosis can be challenging, both physically and emotionally. Your doctor will likely recommend that you exercise regularly and change your diet. These changes can be difficult to keep up with at first.

In addition, your condition can have various symptoms and cause complications that can be difficult to manage. Living with cryptogenic cirrhosis can be especially difficult if you require a liver transplant.

Be sure to communicate with your care team if you have any difficulties managing your condition. Studies show that working with healthcare professionals can improve the quality of life for people with cirrhosis.

Here’s when you need to contact a doctor before and after diagnosis.

If you don’t have a cryptogenic cirrhosis diagnosis

Make an appointment with a doctor if you experience any symptoms of a liver condition, such as:

  • yellowing of the skin and eyes
  • abdominal swelling or pain
  • fatigue

In addition, talk with a doctor if you have any risk factors for cryptogenic cirrhosis, like metabolic syndrome or obesity.

If you have a diagnosis of cryptogenic cirrhosis

After you’ve received your diagnosis, be sure to talk with your hepatologist if your condition worsens or you have new symptoms.

Cryptogenic cirrhosis is scarring of the liver without a known cause. Doctors diagnose it after they’ve ruled out all other causes of cirrhosis.

Although the exact reason for this disease can’t be identified, doctors usually suspect some of the causes. For example, nonalcoholic fatty liver disease is frequently associated with cryptogenic cirrhosis.

Cryptogenic cirrhosis may not cause any symptoms at first, but they may appear as scarring progresses. Treatment usually includes lifestyle strategies, medications, and liver transplantation.

Cryptogenic cirrhosis can be difficult to live with. Be sure to communicate with your care team frequently and notify them of any changes or challenges.