any thoughts???

[Prestige42]

hi, I’ve posted here a couple times already. FibroScan of 75kpa. Current meld score 14. All components of meld score are within normal range except bilirubin which is 3.8. Saw my pcp Friday, she was quite confident HCC ( liver cancer) could be ruled out per ct scan and ultrasound, still need a mri w/ w/out contrast and probably a trans jugular liver biopsy. I’m 42 year male 20 years heavy drinker. Drastically reduced alcohol intake “comparably” since last summer because I’m basically bedridden almost 24 hours a day from pain from AVN and need a total hip replacement of both hips to put a cherry on top but been turned away for anemia and overall poor labs previously. Now I am being seen at a specialty hospital for both liver problems and complexity of having hip replacement surgery. Completely abstinent since April 16 also quit smoking. Upon reading her notes about Friday’s visit she has brought up primary biliary cirrhosis or primary biliary cholangtitis (probably wrong spelling here) but same thing. This is new to me? Has anyone ever heard of or had experience with this? Any input is greatly appreciated!

[Smegmer]

PBC is an autoimmune disease where your body attacks its own Liver Bile ducts. With your 75kpa it means its caused Cirrhosis of the Liver. Your Liver damage isn't the Alcohol, although its good you have stopped. Your Liver has likely been under attack for decades, you just didn't know it.

[Prestige42 in reply to Smegmer]

Thank you for your response. I’m just really really confused. The ct I had said no cirrhosis detected, ultrasound last week said liver is normal, I even asked the gal doing the ultrasound if she would be able to see cirrhosis on the ultrasound she said yes but told me I don’t see anything wrong with your liver as far as cirrhosis would show, the portal vein is patent no abnormal sings on biliary tree I have no symptoms with fluid buildup or jaundice/ nausea yet…and the symptoms associated with cirrhosis. The whole situation is extremely mentally taxing to say the least. Also the ama and Ana blood test were negative as far as PBC would show for confirmation??? I really do appreciate your taking time to respond though.!

[Lantana100 in reply to Prestige42]

Whatever the main cause of your liver problem is you should definitely now abstain completely from alcohol. You may or may not be aware that heavy alcohol consumption is also a very high risk factor for vascular necrosis of the femoral head. So it’s likely that alcohol has contributed to your hip and liver problems. Good luck going forward.

[Prestige42 in reply to Lantana100]

Yes I’ve read trama injury, steroid use and alcohol abuse can be factors of avascular necrosis. For sure not drinking anymore with my liver problems unfortunately the damage is already done to the femoral heads as both are completely collapsed. Thanks for your response!

[Smegmer in reply to Prestige42]

primary biliary cholangitis causes the Cirrhosis. Thats what your Dr was testing for I would guess. So not confirmed then ? Well, maybe any number of things, 75kpa needs to be explained though.

[RugbyMama]

Presuming your specialist explained that 75kpa is the highest you can get on a fibroscan?

Ultrasound COULD show cirrhosis but not necessarily. Ultrasound is looking for physical things - tumours, things that are there that should be etc whereas a fibroscan is measuring how hard or soft your liver is.

Now, critically a fibroscan can't tell the difference between cirrhotic tissue and inflammation, so if there is inflammation around your liver that could explain the high reading.

What are your other blood results? Anything look weird about ferritin?

The biggest, most critical thing now is that whatever is irritating your liver, you remove it - alcohol, medications (prescription or otherwise), diet, whatever it is.

[Prestige42 in reply to RugbyMama]

While I have the utmost respect for doctors nurses ect I am quite irritated the specialist has not sent an email or a call from a nurse at least considering the 75 being the highest number as you stated. Ferritin is high 483 iron high 272, was put on prenatal vitamin folate and iron supplement for low hemoglobin back in September or October… hemoglobin was up to 13.4 last labs may 24 went down to 12.3. Platelets low 97, all phosphate high 171. So I’m thinking about stopping the iron supplement but sure would like the dr to advise that. Thank you for your response it means a lot as I’m driving myself mad waiting for a response from the hepatology/ liver specialist. Hope you are well and take care.