Liver Function Tests Questions

[WendyMarie]

I have been on Urso 18 months. For the first time, my results have lots of things elevated, OTHER than ALP. The Alkaline Phosphates have always fluctuated up & down, but now the following things were also elevated: Protein, AST, Bilirubin, White blood cells, Platelets , all due to PBC (according to my Dr. I have 3 questions for you all. Do you have any of these things, elevated on your LFT, other than Alkaline Phosphates? Have your you LFT levels remained consistently low for the past year? Is it normal for these number to fluctuate greatly? My ALP jumped from 110 to 400+ in 3 months. Does this mean the Urso is no longer working? I would greatly appreciate hearing from you. Thanks.

[Hidden]

Hi

my counts are low but higher than normal. My bilirubin is always high. Do you see a specialist or just the gp. I would ask for a ultrasound to have a look at the liver to see what is going on.

Hope you get some answers soon.

Lou

[Hidden]

Hello WendyMarie.

I have been daignosed with PBC since Dec 2010 and on urso since that time. My LFTs were abnormal and elevating during 2010 to a greater extent than they have done since taking urso.

I had a good response to urso for the first 6mths and then it slowed down. I have blood results which go up a bit and then down a bit and if I was to make a wavy graph since later 2011 it would make a wavy line on it.

I have I think it is 3 abnormal as in higher in the LFTs and the FBC (full blood count) my white blood cell count is abnormal as in a few below normal, has been like ever since 2010 when I started to itch and had blood checks for the first time in quite some years. I always have a one below normal with my HB and did read on the Mayo Clinic site actually (there is a section on PBC but other blood tests, etc) that it can be normal for certain people to have a slightly below reading of HB quite continually and though not a great below normal reading, can be normal for that person as the body would compensate this. When my HB went to two below later last yr my GP did additional bloods like ferritin (iron), Vit B12 and also folate (folic acid). I was found to be normal with ferritin but a low reading so was given iron for a couple mths and had a blood recheck.

My ALP and AST always seem to see-saw, one might go up, other down and vice-versa each blood check. My GGT has never been normal and that came down at the start of urso but then started climbing slightly and so far has remained so.

I don't bother much with the bloods, I go off how I feel and so far apart from early days with urso when I did have two readings over a 6 months period where abnormal ones in the LFTs did climb and then climb again of which the doctor asked me to go back in in 3mths for another recheck (to which then they had dropped!) I've been informed that mine are quite normal for one with PBC.

I think it can take over a couple years for a doctor to get a picture of how the bloods are. I know from myself that I have 6 months where my bloods seem to climb and then they drop in the next 6 months and then climb again the next, etc., that wavy line.

If it's any consolation I got a different GP reading my LFTs later last yr and she said that my LFTs were abnormal when she rang which got me puzzled. I said to her I have PBC and she must not have realised or looked and then said they were not as good as the previous ones so I told her I had the whole lot from 2010 in front of me and she could trust me that these current readings she had were good by comparison. She confessed she only had the current and previous results in front of her. She was concerned at the time about another drop below normal in the HB mentioned earlier and requested the additional bloods. I did go in and see the regular GP who I had seen on registering with and she wasn't at all concerned with the LFTs as said they are expected not to be normal in PBC.

I know if me I would check my own blood results and if felt ok in myself, no additional problems and the doctor had looked them over that would suffice for me at the time. But if I was worried about something I would surely make another appt and go and see the doctor and get a more detailed breakdown of the bloods.

[teddybear7]

I have no idea. They don't tell me any actual results perhaps I should ask for them.

[Hidden in reply to teddybear7]

Hello teddybear7.

I am in the UK (I say that because it varies from country to country regarding how you get results) and I just asked for a print-out of mine . I have found it to be a bit long-winded and at a previous surgery it was not quite understood why I wanted them but given there are quite a lot that make up the LFTs and FBC then I thought far easier to have a GP make a note of any action on them as they do as standard usually (sometimes that is all my GP does if no concern) and then look them over myself.

I think with having PBC it does seem to make that bit more sense seeing the print-out as it informs you of the what is considered normal ranges and you can see. You can make the request when results come through but they are time sensitive and I think it might be several weeks and then by that time your doctor can make a charge for the request.

I ask for mine every time, glance and then file away. I do not dwell on them as I don't think that is good but it is to me far more understanding to see them than just be informed. I asked for mine in the beginning due to a doctor saying my Vit D levels were 'low but not bad' so I wanted to know what that meant exactly in other terminology so got print-out and saw the number (it was on the lowest line of normal and actually normal).

[teddybear7 in reply to Hidden]

Hi Peridot.

I've only had bloods done twice and neither gastroenterologist or gp has really discussed anything apart from telling me I had a marker against my liver. I had to ask gp if I had ama's. Once I'd found out through research what they were. All seem very reluctant to tell me any actual detail at all. I'm on urso but not been told why, or what it does. Not got a follow up appointment. But said they'd send me for a biopsy but that was nearly 3 months ago. Beginning to feel a bit like a mushroom. X

[Hidden in reply to teddybear7]

Hello teddybear7.

The one result I never got as a number was the AMAs but I am not bothered about that. The last test I had to check before PBC diagnosis was the blood test for AMAs and also ANAs another antibody. On the hospital consultant letter he put that I had a 'high titre' of the AMAs but the ANA was 'negative'. With this and abnormal and elevating LFTs plus itching and back in 2010 fatigue he diagnoses PBC. I had no liver biopsy due to the symptons at the time, the LFTs and also a positive result for AMAs. I then started on urso.

It's not known exactly how urso works but it improves bile flow apparently. Due to PBC causing our bile ducts to be damaged and slowly disappear urso adds additional bile to the system that is needed to break down fats mainly. It was originally used for breaking up cholesterol gallstones so urso will no doubt deal with cholesterol in our system. This addition of urso is contributed in PBC by the possibility of slowing down its progression. For me apart from a few minor side-effects in the early days I've had no further problems taking it really. I hate taking any medications so I look on urso as a form of supplement as it is by rights to me an addition of a bile acid to the system. I somehow don't think I would do well without taking urso going by how I was for most of 2010 with itching and fatigue. Fatigue left me during 2011 and I no longer have that, just odd days where I get tired later afternoon due to broken sleep at night if the itch is very irritant.

In the UK if you are diagnosed with PBC due to AMAs then normally a liver biopsy isn't necessary. It only is requested apparently if there is doubts as to what the actual diagnosis is. To me now I wouldn't agree to one as it wouldn't change anything with regards to me taking urso for PBC.

If you are on urso it does sound like there has been a diagnosis of PBC so I would more than likely ask outright but it is also possible that if it is thought a patient had PBC then urso can be started menawhile, think this depends on the doctor him/herself. My hospital doctor didn't prescribe the urso until the AMA result came back, didn't seem much of a hurry to prescribe it to me and quite frankly I could have done with it sooner rather than later back in 2010. I was not happy that under the NHS I had 13wks to wait for the first hospital appt and then a further 6wks for the diagnosis and urso.

Good Luck.

[skippydownunder]

Hi WendyMaree

My LFTs are always up. The alp was 730 at last test and all others GGT, alt and AST were still elevated. Bilirubin was 18 (has been up yo 76) but good news is albumin was up to 40. They have come down since original diagnosis. Been on Ursofalk and methotrexate. The gastro is not happy with it though and has referred me to the head gastro/liver professor at POW hospital in Sydney to see if he has any ideas as he is involved in research and latest drug trials as well. I think I am one if those incomplete responders to Ursofalk but I am far less jaundiced than at the beginning of this journey when my eyes were bright yellow.

Will let you know if he comes up with anything new to lower the LFTs.

Regards

Skippydownunder