Anyone have Primary Biliary Cholangitis / cirrohsis

it rather looks like that is what is causing my daughters plethora of problems that for years have been dismissed by GPs and consultants

Partaking in a recent Liver scan research at Oxford is the only way we found out that her liver is full of inflamation ..its now a wait for blood tests to confirm

But why when her liver function tests have been crazy high for 20 yrs and her face is covered in xanthomas do liver consultants not open their eyes and think

7 Replies

  • it's sad but sometimes you have to ask the questions yourself and put it to the docs to consider!

  • Whats worse is she saw the consultant privately several times

    He claimed she had fatty liver and should loose weight

    She lost a lot of weight and he claimed she hadnt till she stepped on the scales

    He threatened a liver biopsy

    He claimed to have tested for PBC but i just found out theres 2 tests and one is not sensitive enough

  • A liver biopsy isn't a threat it is a routine tool in diagnosing most liver conditions and identifying the state of health of the liver. It would have confirmed (or other wise) the fatty liver diagnosis and would almost certainly have confirmed PBC.

    What scans has your daughter had? Diagnosis is often arrived at by a combination of blood tests, ultrasound scan (minimum) & biopsy.

    Looks like she needs a lot more tests.


  • She had a special new research MRI in oxford last week thanks to a posting on this forum

    It eliminates the need for biopsy apparently

    An MRCP done during the week and a battery of blood tests were done 2 weeks ago

    It was not a matter of avoiding a threat of biopsy but any proceedure like that in someone who has fibromyalgia triggrs trouble

  • The problem with that new scan is that it is still only a trial project and whilst the aim is for it to replace the need for biopsy in the future it hasn't reached the wide roll out stage yet and from what many members on the Auto-Immune Hepatitis facebook page it is throwing out unreliable results for those with auto-immune conditions - one guy with known advanced cirrhosis was told his liver was all clear which was obviously nonsense.

    Fibromyalgia being an auto-immune condition could well mean she is at risk of other such conditions and there are a number of auto-immune liver conditions.

    As I said earlier more tests are required to ascertain what is definitely going on with her liver.

  • I appreciate that more tests are needed to find the cause

    Worried that that scan does not show cirrhosis because i was told i have the liver of a 16 yr old who does not drink yet i am 70 and do drink in moderation

    My daughter does not drink ,also has Hashimotos hypothyroid and had gall bladder removed age 24 with 1000s of "ball bearings " her ALT has been crazy high ever since and she has not been well but repeatedly fobbed off by the liver consultant

  • I've recently been diagnosed with PSC which I understand is similar. It took lots of tests to ascertain why my bloods had gone erratic and it was finally picked up on an MRI. I hope your daughter gets the help she needs now.

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