Calling all cryptogenics

I was diagnosed with cirrhosis of the liver 11 years ago at age 49, following physical and ultrasound examinations and endoscopy which revealed varices in my oesophagus, confirmed by liver biopsy.

I have never been a heavy drinker, nor suffered from Hepatitis or diabetes but have a history of low blood platelet count which suggests that some unknown auto-immune response may be connected with my disease. Therefore, I fall into the category of ‘cryptogenic’ (i.e. unknown cause) which represents about 10% of those with liver disease.

The lack of information for those with cryptogenic liver disease is woeful and it has only been through my persistent questioning of my consultant that I have learnt about it. Those who have attributable cause of their condition can often take specific measures that will either eliminate or stabilise their symptoms: cryptogenic sufferers do not have this option available to them.

Given the extent of liver disease, cryptogenics represent a significant number of people – if there are any out there who would like to share their experiences, please reply to this post.

3 Replies

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  • Hi Howard,

    Yes I had cryptogenic cirrhosis and was giving up hope of ever hearing anyone else labelled the same. I had a transplant just over a year ago, and expecting that I would get a clearer diagnosis after my old liver was removed and inspected. "Findings suggestive of long standing cholangiopathy" however when tested in the lab this was discounted.

    So I'll probably never know, and fingers crossed it's not going to come back.

    It does put you in a bit of a weird place without a definite diagnosis because there seems to be no definite treatment plan as there is for alcohol, fatty liver, hepatitis a-e, cancer etc.

  • Thank you for replying to my post. Keen to know how transplant was for you – my consultant has indicated that I could be eligible within 18 months, but I am concerned regarding rejection due to the possibility of the original disease being an auto-immune response. I am on strong diuretics (water tablets) to combat fluid retention in legs which maybe impairing my kidney function.

  • I've been really well. A very quick recovery, and was out of hospital in 10 days. Living a normal life apart from the tablets. Physically haven't felt better in years. Cycling, hiking most weekends.

    I think auto-immune was ruled out for me. You should talk to your consultant as I think there are test's that can rule this out for you. I know this because I was on a medical trial and anyone with any auto-immune disease was ruled out.

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