PBC cirrhosis of the liver

[Yankeerose3]

I had a liver biopsy showing I have PBC however, all the blood tests for it comes back normal. Anybnody know why that would happen?

[terri2109]

Well it took a lot years, bloods showing slightly raised lft ultrasounds scans and always had the pain the aches the fatigue. It wasnt until a biopsy that i was diagnosed with ana or ama negative pbc which is apparently what was putting everybody off diagnosing pbc. Rather they hadnt heard of it if you ask me

[Hidden]

Usually biopsy is initiated due to abnormal LFT's, ALP, AMA's, immogublin g & m etc. It is unusual to have a biopsy if nothing is suspected. Your Hepatologist is the best person to answer your questions.

[Ktltel]

Wow... I was the opposite. Biopsy said only mild fatty liver but labs said PBC. I have labs checked every 3 weeks for a year now. Mostly because of other meds I'm on for other AI's.

I'm having a "fibroscan" in late January. Apparently this is a true test of what's going on with the liver. Biopsies only tell what's happening in the liver at the very site where they took the sample from. Ultrasound will only show cysts or tumors. I was told fibroscans are the way to go.

Stella ❤

[gwillistexas in reply to Ktltel]

Ktltel...I’m with you on fibroscan 👍 mine will be repeated in one year to check progression. ❣️

[Hidden in reply to Ktltel]

Interesting as apparently PBC is supposed to be shown in liver cells throughout the liver on a biopsy and it is said that it is this so-called staging (I don't go in for and have never had a doctor 'stage' as I've never had a biopsy) isn't the one that might be accurate due to the fact we can have damage in one part of the liver but not in another so dependant on the biopsy site for that.

As far as I've read from reputed sources fibroscans couldn't diagnose PBC (but new technology changes and I might have missed something...) but they can give a better indication of how the liver is if one has PBC for eg.

PS Check out the PBC Foundation Compendium, chapter 14 covers diagnosis of PBC.

[Ktltel in reply to Hidden]

Hello Peridot,

Not sure if you were talking to me... But, what I meant about fibroscans telling us what's going on with the liver was not that they use fibroscans to diagnose PBC. They use Fibroscans to tell one if there is scarring/fibrosis in the liver. Ultrasound doesn't do this. And where a biopsy is biopsy site tested only, a fibroscan can show exactly where the damage is on one's liver and how extensive. I've read that ones have been PBC staged by a fibroscan score. Where a biopsy used in order to stage PBC is unreliable. Correct me if I'm wrong please, this is just what I've read on Healthunlocked PBC.

Stella ❤

[Hidden in reply to Ktltel]

I think they also use biopsies to get a definitive diagnosis when it is not clear from all the other tests.

[Hidden in reply to Ktltel]

Interestingly Ktltel I saw a programme back on tv a couple months it would have been prior to myself being daignosed with PBC back in 2010. It was a live show here in the UK and there were 2 men who were having scans there and then, ultrasounds they were. The specialist knew how each of the men were and said. One man think he was late 30s he was overweight noticeably and he was deemed to have a fatty liver as the scan was pointed out and the other man early 50s was said to be alcoholic and he was informed he had got to a cirrhosis stage.

When the consultant looked at my ultrasound scan when I was there jsut prior to diagnosis of PBC he said my liver looked normal and that he could see clear bile ducts on it.

[Ktltel in reply to Hidden]

Peridot,

Good to know. I had an ultrasound a couple months ago. They said it looked normal.

Still having the fibroscan in January all the same. 👍

Stella1

[Hidden in reply to Ktltel]

Apparently a fibroscan measures the liver density so the condition is known. I am in the UK and when I ws looking on our NHS sites, the nearest one for me isn't one of the hospitals that my area uses as routine. Expect something might come up in future as at the end of the day fibroscans are supposed to be a case of rolling some gadget across a body area like an unltrasound so non-invasive.

[gwillistexas in reply to Hidden]

That’s right. It send waves through liver. I believe the speed in which they bounce back indicates degree of stiffness, if any.

[GrittyReads]

Do you have AMAs? It may be that you have those but normal liver function (blood) tests (lfts), so they did the biopsy to be sure. Or if you have symptoms but no AMAs and clear bloods, that's why they did the biopsy, to check. It may just mean they caught the PBC early, as the liver biopsy is supposed to be the 'gold standard' for PBC diagnosis, particularly in people who don't have the 2 main diagnostic criteria = AMAs, and, abnormal lfts.

Talk to the advisors at the 'PBC Foundation' ... links at the top of the page, to their website and phone and email contacts, for their advisors. The website is a mine of information, too.

Take care, hope this helps.

[Yankeerose3 in reply to GrittyReads]

Thank you

[PBCRobert Partner]

Hello Yankeerose

Welcome to this site. I hope you have joined the Foundation also, as through that we can give you lots of information.

I just want to differentiate between PBC and cirrhosis. PBC used to be known as Primary Biliary Cirrhosis but now it stands for Primary Biliary Cholangitis. This is important for a number of reasons, which I shall share below.

However, there are some people who have cirrhosis because of their PBC (and this is where scans-ultrasound, fibroscan, etc- come into use) but these are in the minority. Cirrhosis refers to "scarring" which is the consequence of sustained damage to liver cells (hepatocytes).

So, back to the cholangitis: this means "inflammation of the cholangiocytes." To you and me, cholangiocytes are bile duct cells. PBC affects the bile ducts inside the liver. These bile ducts are tubes through which bile is removed from the liver. These tubes are only one cell thick. (Imagine a straw as opposed to a garden hose)

Because PBC attacks these cells, it looks like no other condition and thusi s easy to diagnose if you find these damaged cells in the biopsy.

Most people are diagnosed without biopsy, but when the information is unclear or missing, then biopsy is used.

I hope that helps,

Robert.

[Sachin1234]

Let me try to simplify the importance of biopsy and fibroscan for pbcer...

We do biopsy to know the cell structures like abnormal, dead or rotten cells..why we pbcer has to do it is because of our bile ducts destruction due to ai without proper bile ducts liver can not clean out toxic(bile acids) and all the toxic will be accumulate in the liver which destroys cells and turn our liver into cirrhosis phases.

Fibroscan measures the stiffness of the liver which Gives dr idea how much our liver are Harding or not...for me both are important cause I want to know how I am progressing every year with pbc so I can be ahead in treatment 😁👍🏼

It is not necessary to do these test after diagnosis but sometimes pbc also can leads to cancer as well 😔😔🤗🤗🙏🙏