PBC? High ALP and negative AMA

[musicman2017]

I am new to this site, just a month, but have found it to be very helpful. I am 51 and last month my ALP came back high (215) during routine blood work. My family doctor suspected PBC and ordered AMA which came back negative. I have been referred to a liver specialist which I imagine will involve further testing to determine if I have PBC or something else. I feel fairly good most of the time despite sleep issues as a result of menopause. In retrospect, I have experienced episodes of fatigue during the day as I can become very sleepy and struggle to stay awake at times. This has been happening since my 30s, not a daily thing and doesn't last too long (an hour or so), never really thought much of it. Seems like it may take a while to confirm a diagnosis. Just curious as to others experience when first informed of PBC.

[4pjx__]

I have tiredness but it isn't what sent me to the doctor. Like you, I have been tired for a long time. Now that I think about it I can't remember the last time I wasn't tired! I have sleep issues that started when I was 45. I am62 now. I have just been diagnosed with PBC and auto immune hepatitis. Now that I know what the problem is I really feel tired! I'll be seeing a heptoligist in a few weeks to confirm the diagnosis but am just starting with the Ursidol. I really hope it helps! Good luck and keep usb posted. I find this to be a great support group.

-Pam

[GrittyReads]

Most people with PBC are diagnosed because they have AMAs and their liver function tests (eg the ALP, etc) are raised in a way that is typical of PBC. The consultant will be able to do more tests to see if it is PBC, and an ultrasound to rule out some things and check overall liver health, maybe even a biopsy if he suspects PBC, but other evidence is inconclusive. Also, the consultant, or your GP, should test for any other issues that high ALP can be linked to. If you can, make sure to have a summary of your own health issues over the years, as well as any info on your parents' and siblings' health, as my consultant wanted to know if my parentshad ever had any liver issues.

Take care and try not to worry - treat yourself while waiting for further tests, etc. - you deserve it!

[witchiegirl]

I think about 10% of people dx with PBC have negative AMA. It can take a bit longer to settle on a diagnosis and you might be offered a liver biopsy. I have neg AMA and an overlap of PBC/AIH. Initially treated with steroids, now on a longterm dose of immunosuppressant and Urso.