still dont know if i have pbc or

[oreo2016]

all blood work came back normal except i have the antibodies in my blood for pbc which was high i asked dr do i have it or do i still no diagnosis i dont know what to dont i thats 2 drs so far one says yes the other says no so im asking if i have the antibodies in my blood does it mean i have the diease

[inkedup9]

No, not necessarily. Some people carry the antibodies without ever having symptoms, and they don't diagnose PBC with the antibodies alone, unless your liver function tests are elevated. Some healthy people have the antibodies without ever developing the condition.

[GrittyReads]

I'm one of the people who 'just' has the autoimmune antibodies for PBC - have had for decades - but I absolutely, definitely, do not have PBC.

If you are in good health and all the tests for PBC are clear, then you most likely don't have it, and you probably won't develop it.

Also: if you are in good health, don't have other autoimmune conditions, don't have the symptoms of PBC, and don't have a history of PBC, or liver issues, or other autoimmune conditions in your family, then you almost certainly won't get it.

According to UK 'Blood Donor statistics' about 10% of the population have the AMA-M2 autoantibody in their blood, and yet they do not have PBC: NB - only about 1.5% - 2.00% of those, ever go on to develop PBC.

Back in 1992, I was feeling a bit run-down, with various odd symptoms (my mother had died not long before - I'd nursed her through cancer - ...and I'd gone back to do a really demanding University Course). A young, gung-ho, GP discovered the AMAs in a blood test, and sent me to see various specialists. They all decided I was fine, but PBC was explained to me (although never named) and I was told to have the 'special' blood tests every year, which I did, and all was fine until some years ago, when a new-to-me GP - in a new area - panicked at the result. So then I saw a local liver specialist, who explained it all, said I probably hadn't got it, but then diagnosed/labelled me as 'sort of' having it, which messed up insurance etc. So ... I eventually saw one of the UK's leading PBC consultants - 3 years ago now - and he overturned the diagnosis ... after testing and examining me to destruction, and after taking a full health history, as well as my family health histories.

To be diagnosed with PBC, 2 out of 3 diagnostic tests have to definitely show PBC:

1 - the presence of AMAs at high levels (and at levels which stay high, and even increase with time) and / or:

2 - Liver function tests (lfts) [and some other bloods] that are abnormal in a way that indicates PBC.

3 - a liver biopsy that shows typical PBC-type damage to the minute biliary tubules of the Liver. NB This is only done if symptoms/history of PBC are strong, but at least one of the other two tests is unreliable; eg some people can have PBC without having AMAs.

I don't know how much of this answers your worries or fits your situation/history, but I hope it helps. You can always talk to the people at the 'PBC Foundation' they are wonderful. Follow the link at top, or Google. Their website is a mine of useful info, too.

Take care and try not to worry - always the worst for any illness: so, have fun, spoil yourself, and take your mind off it. I can recommend rock-climbing!

[oreo2016 in reply to GrittyReads]

it answers alot thank u