I was diagnosed with PBC following look tests during treatment for breast cancer. I have AMA of 1over 640, which apparently is the main diagnostic reading. My serum alkaline phosphate is normal but my GGT level is 156 , with normal range being 0-40.
My serum ferritin is very raised too. I’m wondering if anyone can explain this. Thanks.
Blood tests...... not look tests🥴🥴🥴
Hi 7443jec
I am sorry to read you have been treated for breast cancer but hope that you have now come out the other side. The PBC Foundation on its web site (free to join) has a good article on which blood tests are used to diagnose PBC which is helpful. Whilst I have no medical training and am not qualified to give advice on blood tests it is clear that your AMA is elevated as is the GGT which is a blood marker for damage to the bile ducts but cannot be used as a definite indicator of PBC unlike the AMA. Do you have a marker for your bilirubin?
I keep a record of all my blood tests on a spread sheet (over 13 years) which it is suggested gives a much better indicator of how we are doing. One off tests especially early in treatment are not the best indicator of how we are doing. I would imagine your treatment for the breast cancer and the stress from that alone may have an impact on your results.
Something I have learned from others over the years it is best to be guided by how we feel rather than from our blood test results. The PBC Foundation with its Bigger Picture suggests that ther is more we can do, if you take a look at Lifestyle it may help.
pbcfoundation.org.uk/pbc-th...
Although this does not truly answer your question I hope it has helped.
Yes, thanks. It’s just nice to be in touch with others in the same situation.
I will look 👀 at the foundation info. X
Could not agree with you more and I thank goodness for finding this on Health Unlocked it is such a valuable way of connecting.
Hi, welcome and I wish you well on the treatment for cancer.
Urso has been very effective for me and my LFTs are much lower since taking it from October so there is thankfully lots of hope with PBC.
Whilst I was going through diagnosis they were keen to rule out haemochromatosis and since your ferritin is high has this been investigated? Again it is a condition that can be well managed.
Have you been seen by a hepatologist? Your ALP isn't that high and can be associated with other conditions. like gallstones. I'd be sure to get a second opinion. Elevated AMAs can be found in other conditions, too. I wouldn't get too freaked out until you know what you're really dealing with, and then know that if you are diagnosed early in PBC, which you clearly have been if that's what you have, your prognosis is excellent. Don't get scared by the frightening worst case scenario stuff you'll find on the internet.
No, I am being dealt with by a gastroenterologist, don’t think there is a
Hepatology dept at my hospital. I think I may have had PBC for years because every time I’ve had a blood scan I’ve been told that I had raised enzymes, but it was never followed up until now.x
Are you in the UK? You might want to teach out to Robert, the Administrator of this group. He’s really knowledgeable about PBC and knows the resources there.
I was diagnosed 11 years ago and my alk phos has been normal since treatment with urso and bezafibrate. Thus my liver is described as "compensated " even though my liver is deteriorating and showing cirrhosis. I asked my consultant how this can be the case with normal alk phos? His reply is logical - "normal alk phos goes with a compensated liver I.e. liver FUNCTIONING OK, but your gamma gt, ast and alt are all always above the normal range - these are better indications of liver CONDITION .
And bilirubin 😊
Yes - like alk phos my bilirubin and albumin are ok - for now! Interested about rebounds off ribs, but if rebounds and not rebounds are mixed in a test run then it would show up as variability and high standard deviation.
Good point. Makes sense. 😊
That all makes sense, my alk phos is ok but the GGT is very high. My GP , who doesn’t seem to think the whole thing is serious!!!!!, says my liver function is OK. But obviously the liver condition is not good. I’m having a fibroscan in two weeks. By the way, where in Sussex do you live, I’m in Bexhill on Sea. X. Thanks
Thank you. I’ve been on Urso for three months, blood tests in September and fibroscan in October. I may have a clearer picture then. X
7443jec - it's hard in the early months waiting what seems like ages until you see the specialist. Try to enjoy yourself and spoil yourself, stay out of Holland and Barrett and get yourself something lovely that delights you, or do something(s) really pampering or fun! Be with people you love to be with. These things are really good for us! 
Stedham, a little village out of Midhurst.
Thanks, I’ve lived in Bexhill for 12 years, originally from North London. I love it here. Good luck with the PBC. X
+ AMA; Slightly elevated ALT
How often do people get a scan?
Do you feel your liver?
High liver enzymes not AMA test yet but shouldn't my labs get worse not better 
