PBC suspecting

[Cat1966]

Hi,

I am very worried about my liver tests, and possibly PBC.

I have been having yearly blood tests since 2008 (except 2019 and 2020), LFT were always normal, until November 2021, my AST, ALT, was about 3 times the norm and GGT was 4 units up.

The tests were repeated in January, enzymes went slightly down, and and in February AST and ALT, went few units down again, GGT was normal.

My US showed a liver scarring with some nodularity, and central bile duct at 7mm and tapered distally.

Fibroscan though was at 24,7 (with no fatty liver) that is confirmed cirrhosis. I am awaiting for the results of mri, another ultrasound and blood tests (including ANA and AMA)

I was a moderate drinker (last 6 months did not drink at all), eat quite healthy.

But In 2008 my blood test showed antibodies for hep c, that was self resolved with no virus present. PCR for hep c was negative, no virus was confirmed again in 2021.

From what I read, PBC is due to the T cells in the liver producing autoimmune cells that are destroying the bile ducts. And since I cannot point at any other reason for having cirrhosis, I am concerned that T cells that killed hep c 14 years ago triggered the autoimmune response as PBC.

Has anyone been diagnosed with PBC with cirrhosis, and ALP normal?

I will really appreciate any feedback, as since my Fibroscan last week I am super stressed, and do not know what to think.

Thank you.

[Kakey]

That's a horrible situation, sorry you are going through that. AFAIK fibroscan accuracy can be affected by inflammation, which you know you have because of your raised ALT and AST.

I don't know about your specific circumstances, but I think it would be unlikely to have cirrhosis from PBC with normal ALP. But I have heard that PBC can progress even with good blood results, so maybe? Autoimmune disease can certainly cause cirrhosis, there's also AIH which doesn't have raised ALP as a feature.

Good luck, hope you get your results back quickly, and that there is good treatment available.

[Cat1966 in reply to Kakey]

Hi Kakey,I appreciate so much your replying!

I did some digging on AIH, there is no ALP, but AST and ALT are usually more than 5 times elevated, mine are about 3 times elevated. Unless it is a rare thing.

And rare is in my vocabulary, I was diagnosed with congenital bilateral hips disorder (1 in 2000), and had my both hips replaced in my early 40th.

So adding another “rare” would fall in the pattern.

I do have higher than normal C-reactive protein and sedimentation rate, that show an inflammation in the body.

I wonder if anybody else had similar test results.

Thank you!

[Kakey in reply to Cat1966]

You're welcome. Trying to decipher bloods can be tricky, mine looked like AIH even though I did have raised ALP, but on biopsy it turned out to be PBC.

[Cat1966 in reply to Kakey]

I will probably know within the next few weeks.Awaiting time, being in the dark, knowing that something is very wrong and not being able to at least improve it to some point are very stressful.

I guess having the answers will bring some peace.

Did you have any other symptoms besides blood work at the time of diagnosis?

You mentioned the drs thought it was AIH before biopsy, did they say why?

[Kakey in reply to Cat1966]

Waiting is awful I know. A diagnosis with a treatment plan can be a relief. Hope it's not too long for you.

Blood results pointed towards AIH. I had elevated enzymes and digestive problems for a long time.

[Cat1966 in reply to Kakey]

I have started a stricter diet, eating small meals, no fat, sugar, salt, carbonated drinks,Only boiled or steamed, to help mi liver a bit.

Did not stop having coffee in the morning, read it is good for scarring, not sure for AIH and PBC.

Still light exercising.

I ll let you know on the results.

Thank you so much for your chatting with me.

It makes a big difference to be able to talk with somebody who understands and experiences the same.

[Tcmb50]

So sorry about the difficult situation you find yourself in. I certainly understand the worry and fear surrounding liver tests and possible diagnoses. I do not have a great deal of knowledge of PBC yet but have very recently seen a hepatologist with 30 years of experience in this field. He explained that despite having a high AMA, I would not be diagnosed with PBC until my ALP has become elevated. He specifically said that despite slight elevations in ast, alt and ggt, i could not be treated as having clinical PBC without the elevated ALP. Others on here I am sure will have more detailed knowledge . I wish you the best and hope you get answers soon.

[Cat1966 in reply to Tcmb50]

Hi,Thank you so much for sharing.

I appreciate every single note.

I am so new here and feel very stressed, as I don’t have anything conclusive.

Besides PBC, I consider AIH (ALP are normal), as what I read is that with the cirrhosis caused by AIH, AST and AFT are only slightly elevated (my case), and AIH is not that easily treatable.

[Tcmb50 in reply to Cat1966]

Hopefully you will not have to wait too long for answers. You need someone to reassure you and explain things properly . I am exactly the same, worried sick about things until I know exactly what's going on. It seems with liver issues this is not always easy. Maybe this will turn out to be related to hep c and can be treated. I know people can get high fibroscan results because of inflammation. I also know many people are very stable and well with AIH. Please try not to worry too much even though I know its not easy and believe that this will pass and you will be ok.

[Cat1966 in reply to Tcmb50]

Should know within few weeks. Will post when I know more.

I keep my fingers crossed for you as well.

[Tcmb50 in reply to Cat1966]

Thanks ,definitely post when you get answers. Take care

[Abstractionist]

You will know more when you get ANA and AMA back. In the meantime eating a healthy diet as you are is very helpful, staying away from alcohol is imperative and of course no NSAIDS like ibu. This sounds more likely to be an inflammatory process which once identified can be treated. It sounds like you are doing all the right things to help yourself, and you are getting good care from careful docs. Good luck.