ALP Concern

[Carly92]

I've recently been diagnosed with Primary Biliary Cholangistis. In my research I've learned that ALP is an indicator of PBC. In the blood work I've had done over the last five years, the ALP has been high only once, and that was a few months ago after I had fasted (no food or water) for 12 hours. My creatinine and GFR were also high. From this the doctor said not only do I have PBC, but also stage 3 kidney disease. My GP said I don't have the kidney disease because the high levels of creatinine and GFR were taken after a fast. I've just had my blood work redone and the levels are normal. I'm really starting to question my specialist. Do I even have PBC? The latest ALP was normal. I did have a liver biopsy recently and that showed PBC. But is that enough? Any thoughts?

[Kristian]

I think the biopsy is likely to be correct. If that confirmed PBC then its probably right. Your GP is also right about the creatinine and GFR (Glomerular Filtration Rate). Creatinine can rise if you are dehydrated and as GFR is calculated from your creatinine then that too will be affected. Although usually if creatinine rises GFR falls. The lower the GFR the worse the kidney function. Hence the Chronic Kidney Disease issue.

I'm not sure about PBC, but I am aware with PSC ( Primary Schlerosing Cholangitis) that you can have flare ups. Maybe outside of those periods, the liver enzymes are not produced in as greater numbers as the liver isnt being actively attacked at those times. I am though guessing a bit there. I'm not sure about others but my ALP, with PSC, was always raised. But the course of my disease appears to have been a bit out of the ordinary in many ways, so wouldn't be surprised if that was too.

Hope thats a little bit helpful. If nothing else it may give you a couple of ideas of things to ask your doctor/GP next time you see him/her.

[Carly92 in reply to Kristian]

Thank you Kristian. That makes sense about the biopsy. Every bit of knowledge helps!

[GrittyReads]

Check with the BLT, or there is also a 'help site' here run by the 'PBC Foundation'. They can give you the best advice.

The formal/official criteria for the diagnosis of PBC are very strict: largely because so many GPs and other medics - even GIs and some Hepatologists - make erroneous diagnoses of PBC ... This is largely because it is fairly rare and many medics never see anyone with it. However, the 'PBC Foundation' recently published an 8-page summary, of the most recent and high level [UK/US/Eu] document laying out the exact terms for the diagnosis of PBC.

Simply you have to have 2 out of 3 of the main diagnostic criteria. That is:

1 - the presence of AMAs (anti mitochondrial antibodies) usually sub-type AMA-M2. ... and/or:

2 - abnormal liver function tests, typical of PBC. [High ALP is only one of these, but it is generally very high and monitored (along with other lfts) for about 6 months. .... And/or:

3 - a liver biopsy that shows PBC. This is the main diagnostic tool when one of the above two tests is negativeet, but eg: symptoms, history etc,, suggest PBC.

The positive biopsy does suggest that you have PBC, but I would talk to the 'BLT' and/or the 'PBC F' advisors, as lfts would usually be very elevated, with other chemicals in addition to the ALP awry, so it may mean that even if you do have PBC they have caught it very early, which is good.

[Carly92]

Thank you GrittyReads for the valuable information. Not sure how early it's been caught - I'm at stage 2.