Is Pbc progressing?

This may seem a strange question but can Pbc be progressing if lft s are nearly normal?mine have never been high but have dropped a lot even tho docs won't give me full dose urso.

I recently googled a site that said docs shouldn't take any notice of blood results as to progression of Pbc.i then wondered why bother having them done then.sorry can't find the site-think it wasamerican

28 Replies

  • Yes it is still progressing, at a different pace in each person. The urso just keeps the bile and toxins flowing through the liver. Maybe I've got that wrong but thats what i have read and understood. The antibodies attack the lining of the bile ducts in the liver, causing them to swell thus blocking the flow of bile. The urso which is also a bile but a different one that seems to help to keep the flow going. The linings of ducts that are swollen eventually turns fibrotic then cirrhotic. Your liver can be quite fibrotic and you can have normal or almost normal lft. Your blood test should include a p3np, a marker for fibrosis. Lft and ultrasound can't always say the exact state of the liver. Is your doctor following the instructions of the liver specialist?

  • I also read a site which seemed to say that, sorry I can't put a link so your question is not at all strange I don't know the answer, but the reply from iowcaro is very informative. As I don't think I've had a p3np test, I will be checking now though. My gastro seems more interested in the ALP, does make you wonder.

  • Alp is very important to.

  • I'm sorry I can't help newly diagnosed 6 weeks ago the doctor never told me a thing about this illness that I have.

  • Hello Dese.

    I was diagnosed with PBC back in Dec 2010 after starting to itch early 2010.

    Beside the PBC Foundation, there is also another good UK site, Liver North. If you've not found it already (you can read back newsletters and request them to send you or email them), check it out and fill in your details for their free dvd on PBC. I'll pop the site link on here for you.

  • Thank you I will go on there website

  • If you are in the UK. It may be that your doctor has no idea about Pbc. I spent a long time visiting my doctor, who kept telling me I would be fine if I stopped drinking. (I was tee-total). Eventually I changed my doctor surgery. I explained why I wanted to change and they were wonderful. The Practise nurse and my Gp studied up on the disease and I have received good treatment ever since. CHANGE YOUR DOCTOR.

  • Same for me Dese, thankfully google was there and it led me to this site!!

  • Hello cazz22.

    Apparently the LFTs that are taken at intervals in my opinion can be altered by the addition of urso but also it is said that there are 2 certain bloods (one is bilirubin, forgets the other at the moment) that are more important in the progression of PBC.

  • Thanks the mo having a battle with hospital as my doc doesn't seem to know anything about Pbc.wont give me any more urso(450mg) leg pain not linked to Pbc.cant have another scan although I've got lesions on my liver.😡go in two weeks to see him and intend to raise the roof

  • Sorry you are having issues with your doctor cazz22 - though I don't know exactly what type of "leg pain" you have, the link I have provided below may be of some help - Re: "Bone Disease and Joint Pain"

  • The quote below comes from the 'Doctors Panel Answers PBCers Questions' page - it is a few years old, but I suspect it is still relevant:

    "Howard Worman, MD

    Division of Digestive and Liver Diseases

    Departments of Medicine and of Anatomy and Cell Biology

    College of Physicians & Surgeons

    Columbia University

    New York, NY 10032

    December 1999


    Is it possible to be in stage 3 or 4 by the biopsy and have normal LFTs taking Actigall or URSO? Are the LFTs actual indicators of the disease progress?


    I always tell the second year medical students that "liver enzymes are NOT liver function tests (LFTs)." The term "LFTs" is a terrible one and really should not be used. [Help me convince your doctors!]

    The values of the blood ALT, AST, alkaline phosphatase and gamma-glutamyltranspeptidase (GGT) activities do NOT tell you about the function of the liver. They also do not tell you about disease progression (i.e. the development of cirrhosis or deteriorating liver function). The so-called "LFTs" can be normal in individuals with end-stage liver disease.

    In contrast, they can be markedly elevated in individuals with liver disease but normally functioning liver. In PBC, ursodiol (Actigall or URSO) may lower the blood alkaline phosphatase activity in the setting of significant liver damage (Stage III or Stage IV histology).

    The best biochemical tests of liver "function" are serum albumin concentration, serum bilirubin concentration and prothrombin time. In PBC, the serum bilirubin concentration (which may also be lowered by ursodiol) is probably the best biochemical predictor of disease progression."

    The below link takes you to the current PBCer's site, then go to 'Areas of Support' (top of page), then click on 'Doctor's Panel'


    Okay, try as I may, I can't get this link to work unless I 'copy and paste' it - hope that works for those of you who are interested in the site.

  • Spot on with this information.

  • My gastro said that pain is unrelated to PBC and i have just been diagnosed with chronic pain. I also questioned him on the blood results being maybe not being an indication of everything and i am being sent for a fibroscan. I also got a print out of my bloods and have asked a friend to have a look at them as i have no idea what they should be as I don't normally get a copy but asked this time.

  • Hi Dollydaydreams, I'm in Australia so our 'blood' results will probably be different in how they are displayed on the report. With mine, the abnormal levels are in 'bold' print. You should also have a 'normal' range (mine are in brackets) listed.

  • I have two in bold print and they also have a star on them straight after the number.

    Just going to get my other half to have a look as his brain cell still works better than mine

  • Bold print and star are also on my 'abnormal' ones - if they were a worry your doctor would have mentioned them, I'm sure, but make sure you keep getting your Pathology results (LFT results) so you can keep an eye on them yourself. Makes me feel better, and more in 'control' of my health, mind I'm a bit of a 'control' freak at the best of times. ;-)

  • Thank you DianneS, will keep an eye on them from now :o)

  • Well my lfts Hover just above norm but I'm becoming more symptomatic but until I start turning yellow & taking/ retaining fluid I can't see my medical peopke doing a lot. I just keep getting told to slow down & stop work. Can't do that!!

  • Hi Teddy bear, thats just it I don't know what the norm is, I used to get printouts from my GP years back but when the gastro took over the printer in the hospital was always broken according to them, so gave up asking in the end.

  • Hi dollydaydreams, does the 'printout' you have, have numbers in brackets?

    I.e.: Alk Phos (30-115) U/L - then a number that represents your level

    (I'm in Australia, so your printout may look a bit different).

    Anyway, the numbers in the brackets are the 'normal' range (on my printout)

  • Hi DianneS it has this

    Alkaline Phosphatase 284* U/L H 30-130

    Albumin 34* g/L L35-50

    My other half said they are within normal but he may have said that to shut me up :o)

    These are the only two that are bold and marked with a star, is this how they do yours.


  • Okay, remember I'm not a doctor (you should check with your's), but looking at your Alkaline Phosphatase 284* U/L H 30-130 (for example) - I would read that as the 'normal' range for that particular item is 30-130 U/L H. The Pathology Lab. that does my LFTs lists the normal range as

    Alk Phos (30-115) U/L.

    Interestingly, your Albumin level is the same as mine 34*, we are both one number below the 'normal' range.

    I'm sorry if you have mentioned it above, but how long have you been diagnosed for? - I was diagnosed 27 years ago. If it has only been recently, you will probably find that all the 'levels' in your blood tests will move around quite a bit from one blood test to another. Don't worry too much about them, leave that to your doctor, he'll know when to worry. ;-)

  • Your alp is high your albumin is just a tad low but not bad at all. Are you on urso? Mine was like yours unail urso

  • Hi Alaskanbutterfly. Thank you,

    yes i have been on ursofaulk for 5 years in november,

  • It took them 3 years to diagnose me and diagnosis was 5 years ago so I have had it 8 years at the very least. GP said i could of had it for years and not known.

    Not too worried about bloods I just wanted to know if they are normal ish.

    I am being sent for a fibroscan sometime.

  • Took over two years for me to be diagnosed - the AMA was the last test the doctor did, so when that came back positive he diagnosed PBC.

    I had a fibroscan last December, not sure when I will, or if, have another one - I have six monthly ultrasounds which give more information about the other organs, as well as the liver, fibroscans don't do this as far as I know.

    Take care

  • I had the ultrasounds up until 12 months ago and was first diagnosed with a biopsy, not had a fibroscan up to now but quite looking forward to it instead of another biopsy in the future :o)


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