is it possible i have PBC

hi i am kinda scared i might have PBC. MY AMA came back positive but my titer was only 1:20 also my smooth muscle came back higher than normal... So my question is is it possible to have PBC but all normal alts and asts... Also i am only 19 and a male and i have been reading a lot of the posts and most seem to be women although some are men but in mid 50s has anyone my age been diagnosed with PBC i have not seen any male below like 50 whose been diagnosed. IF it is what the doctor said it might be i feel like im really young or atleast alot younger than most people diagnsed please offer any help you have. thanks

5 Replies

  • Hi josh , I would be very surprised if this is pbc , but I'm not a doctor !! You need to have a biopsy to know for sure , I hope you have a good doctor to put your mind at rest... good luck , sue x

  • Hello joshshamous.

    It is possible that a small percentage of the male population can acquire PBC just like a small percentage of females can acquire PSC (another liver condition).

    I am not sure what the other test you had could entail and as you know like probably everyone else on this site I'm no doctor either.

    It is possible to have PBC and continue to have normal LFTs (liver function test as it is known, it is a series of different blood checks, the ALT, bilirubin, AST are some, I've forgotten the others). For some they never know they have PBC unless it is found by accident when some other medical investigation as it never progresses at all. Some like myself, a female (I was 46 when diagnosed 2010), I took myself off to the GP due to itching for a fortnight.

    You didn't say how you had these blood checks that have got you wondering or if it some theory a doctor has said to you.

    I was fortunate during 2010 that my GP just informed me he was doing another blood check and then said it wsa to rule this or that out and then I got the results and it continued from there. I had heard of PBC whilst I was undertaking bloods but not from my GP. I found it myself but never said anything as I seriously thought that it was somethng that would go away, I was over-working at the time, very fatigued and thought it was something to do with being 'run down'.

    Your doctor will probably continue keeping checks on you and take it from there. I am not sure about different antibodies but the LFTs can also be a sign of a bone problem but this can be ruled out via blood test as I had one early on when I was itching, to rule out which area the doctor could be dealing with.

  • Hi Joshamous,

    I think there may well be other things they will go on to test for - I'm not sure about the 'smooth muscle' ... but I guess someone will be chasing that up. Check what else they are planning to do.

    It is possible to have +ve AMAs and not have PBC, I've had +veAMAs for over 23 years and still no symptoms of PBC, or abnormal LFTs - although I am currently pushing for more regular tests ... such as ultrasound, fibroscan ... as things can happen in the liver without lfts being abnormal.

    If you have not been offered ultrasound, fibroscan, MRCP scan, etc. I'd ask, especially if other tests all draw a blank. As Peridot says, it's rare for men to get PBC, about 1/10th, of the % of women. However, there are far, far more people in the population who test +ve for AMAs (as revealed by blood donors) , than who ever go on to get PBC, so you may just have AMAs. You will probably have to have regular (annual?) blood tests, but that may be it.

    Why were you tested in the first place?

    I hope you get sorted, try not to worry.

  • hi thanks for your reply. i got tested because my lfts were originally elevated so my gp sent me for a ct scan, ultrasound. which lead me to going to the gastro doctor and he recommended it

  • So have your lfts gone down, since? Strictly, I think they need to be monitored over a period, and still remain abnormal over time, for the diagnosis of PBC to be confirmed, even with +ve AMAs.

    What did they say as a result of the CT scan and ultrasound?

    If you don't have symptoms, and AMAs and lfts are not conclusive enough for PBC to be diagnosed, a biopsy is the 3rd test, but they don't do it as a matter of course. Also, lfts can be adrift for all sorts of reasons, especially if temporary, and - as I said, some people just have +ve AMAs. Also, there are different sub-types of AMA that are more linked to different conditions.

    I think you should talk to the PBC Foundation people: there is a link to their site at the top of this page, with phone numbers on the site to talk to the main advisors.

    But do try not to worry. Even if it turns out that you have PBC, it is not at all as worrisome as it used to be. Since they developed the drug Urso, most people manage to live perfectly normal lives. There's a common saying on here among 'fully fledged' PBCers, that they now expect to go with PBC, and not because of it - eg 'old age' will probably see all of us out.

    Try to relax, have fun, do what you enjoy. Stress is the worst thing for any condition, so try to chill, and treat yourself. I hope all goes well, let us know and talk to the PBC F people.

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