Was anyone here diagnosed with cryptogenic liver fibrosis? I have Gilbert's Syndrome. Sofar findings: heterogeneous echotexture on ultrasound, fibroscan 8,8 Kpa (but with IRQ/median 32% rather poor reliable as I found), INR 1,28 (but after 2 months it decreased to 1,13), Ldl slightly high 140, total cholesterol 215, witamine D first 19,1 ng/ml after 2 months increasing sun exposition and supplementation it went to 36,9 ng/ml, bilirubin around 2,8-3,5 (but Gilbert's Syndrome explains this).
BMI around 25 when first tests, now around 22-23, no alcohol level to cause any damage. Ruled out (at least based on current tests) HCV, HBV, AIH (no antybodies like ANA, AMA etc.), PSC, Wilson, hemochromatosis. All other tests like AFP, platelets, albumin and so on in normal level. No symptoms at all.
I was consulted with 2 hepatologists but they said no idea so far. Anyone with similar situation? Or maybe diagnosed with cryptogenic fibrosis?
"The primary outcome variable was poorly reliable LSM, as defined by Boursier et al (19). Specifically, poorly reliable LSMs had an IQR/M >30% and median liver stiffness ≥7.1 kPa. Very reliable LSMs had an IQR/M ≤10%, whereas reliable LSMs had an IQR/M >10% and 30% (regardless of liver stiffness) or an IQR/M >30% with median liver stiffness <7.1 kPa. When compared with liver biopsy as the reference standard for staging fibrosis, poorly reliable LSMs are less accurate (ie, have lower areas under the ROC curves [AUROCs] and rates of accurate patient classification for fibrosis) than very reliable and reliable scans"
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MINTVCX
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I was diagnosed with Cryptogrnic cirrhosis for a long time too. Whilst my liver disease had patterns similar to other liver disease most of the tell tale signs on scans, images and biopsies weren't apparent, or at least noticeable. It was only after transplant when they got a good look at my old liver did they come to a more definitive diagnosis of the actual cause. That, in the end was what they originally suspected.
From what I read at the time its quite common to eventually reach a known diagnosis in patients initially diagnosed with cryptogenic cirrhosis. For me that was PSC l, but it could be any number of the known liver disease types. The problem is if they can't fully identify a cause they have to call it something, and thats just what cryptogenic means, unknown cause.
It can though be the case that a recognised cause isn't found. But, that doesn't change how your managed. It just means any tailored treatment is a bit more difficult to prescribe.
Hope thats a little helpful. I'm afraid it may be a frustrating time for you for a while not having a known cause. Hopefully, something will turn up in time to give a clue if it is something more recognised.
Yes, the tests that were abnormal initially were, GGT, ALT and ALP. I also had a raised pANCA titre discovered on earlier testing for rheumatic issues i had.
would you be kind enugh to tellme what your GGT rtresult was? I've had recent results GGT 127 (range 7.00-38.00) also alkaline phosphotase 230 (range 30.00-130.00) Phone appt with gp on Friday to discuss! I'm not a happy bunny!
I think sharing of actual numbers is frowned upon foxglove as they can be a bit misleading. My results for GGT though were usually around 5 times the upper limit of normal, but did fluctuate upto as high as 12 times the upper limit of normal.
To be honest though GGT isn't that helpful a marker, nor are the numbers that important. Its more about whether they are persistently raised and whether they are increasing, stable or decreasing over time that they tend to be interested in. The likes of GGT, ALT AND ALP all just help to show that some injury is occurring at the time of the test. They can also help steer to a possible cause. The more important markers are those of actual synthetic liver function like bilirubin, INR, albumin, sodium etc in addition to blood counts like heamaglobin and platelets.
Thanks for this understanding and sort of reassuring post. I know British liver trust do not like the posting of actual results as most of us not doctors. I only want to learn from others personal experiences! You seem to have the nescessary knowledge and are good enough to share!
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