My name is anne i am 59 years old
Have positive amas
Referred to hepatologist for further investigation
More blood tests done at the hospital
Hepatologist phoned me to say two of the blood tests were positive for pbc but final test which is a definitive blood test for pbc negative confusing
Anyway hepatologist wants me to go on urso and in 3 months time when i have blood tests they will have a better idea
I am asymptomatic
Has anyone else experienced this where tests are inconclusive for pbc
I had to do a biopsy for diagnosis. Even the biopsy had to be sent for a 2nd opinion as the pathologist at the hospital where the biospy was done couldn't definitively diagnose. So my Hepatologist sent the sample slides to one of the leading pathologists for liver conditions for 2nd opinion and a diagnosis. It was nerve wrecking waiting for all of that.
I didn't believe that anything was wrong except the blood work was off...& biopsy also revealed issues, though not deemed conclusive by first pathologist.
Thanks for that the hepatologist has started me on urso and will check bloods in 3 months time
You will do just fine🤗
I was also inconclusive for PBC. Same situation and they couldn’t even confirm it with a biopsy. That said they did start me on Urso and my levels did go down, so they assume it is PBC. That was eight years ago, and I’m still on Urso. However, I continue to see different doctors and have different tests because it’s not a perfect science and doctors misdiagnose all the time. Good luck with everything
Thanks for that glad i am on urso and so far it agrees with me the last blood test the hepatologist did was a definitive test for pbc and that came back negative so she will continue to monitor me glad you are doing well on the urso 8 yrs later
Where do you live danall
Hi Ballymahon2, which 2 blood tests of yours are positive and what 's the number? I only have positive AMA, high normal of ASL and ALT. My doctor did not give me any medicine yet.
--Jane
Jane i know there was an ama and high normal of one of the others i have asked the hepatologist for copies of results she was on the phone to me so it was hard to remember all she told me she did say that the definitive blood test was negative for pbc
However she wants me to take ursofalk for 3 months and my gp will do blood tests in 3 months time to see if levels come down and this would indicate pbc
The tests for pbc at present are inconclusive
That's interesting, I am inconclusive for PBC also and my doctor won't give me urso. I saw 2 hepatologists and both of them think I better wait and see.
Is your doctor a GI doctor or Hepatologist? Which marker is he/she monitoring? AMA M2? liver enzyme? billirubin? Albumin or all of them?
My doctor said urso efficacy is checked by monitoring the liver enzyme. If liver enzyme is already normal then there is no way to know if urso is working.
Maybe it's worth to ask your doctor. I am confused about what's the best protocol.
--Jane
Jane i know one of my lfts is elevated also have ama m2 tests are inconclusive but i dont mind starting on urso and will get my bloods done again in 3 months time just to see if it makes a difference
Jane do you have symptoms
Well, Hard to say. Some PBC symptoms overlap with other diseases. I have several symptoms that I don't know if they are caused by 'possible' PBC or other things. Example: itchiness that comes and goes could be caused by food allergy or cleaning product. Chronic indigestion or IBS. Joints & connective tissue pains, muscle spasm that could be caused by tendonitis and spinal stenosis....
Wish I know more...
I believe I understood my dr to say, the ALP is the one that if it’s high, it is the one that damages cells in the ducts. That’s why he specifically wants that number down.
Thanks. My ALP is normal. Maybe I should just relax and stop wondering. 
Ama m2 and i think one raised liver enzyme i want to get a copy of this definitive blood test done also at the hosp which states i dont have pbc
I am happy to start on urso if there is a doubt
I will know more in 3 months time when i have blood tests after 3 months on the urso
In the meantime i will stay healthy and positive
My doctor is a consultant hepatologist
From an article in the Journal of Hepatology. Pretty much tells you all the stuff they look at for diagnosis & monitoring once diagnosed.
Pbc should be suspected in patients with persistent choke static abnormalities in serum liver tests or symptoms including pruri- tus or fatigue (Table 4). An abnormal serum level of ALP is typical in patients with PBC, and is associated with ductopenia and dis- ease progression; other factors can modulate ALP values indepen- dently of cholestasis, such as: blood group, ABH secretor phenotype (secretion of ABO blood group antigens) and high IgG values in autoimmune hepatitis (AIH)-PBC ‘overlap’ syn- dromes [28]. Another biochemical feature of PBC is increased immunoglobulin concentrations, particularly IgM, which may be driven by epigenetic changes [45]. Patients with PBC may also have elevated serum transaminase (aspartate aminotransferase (AST) and alanine aminotransferase (ALT)) activity, which reflects the degree of liver parenchyma inflammation and necrosis, espe- cially when associated with increased IgG [46–48]. An AST/ALT ratio greater than 1 may be a marker of ongoing liver fibrosis and elevated GGT can be identified prior to rises in ALP. Hyper- bilirubinemia occurs as PBC progresses, and significant elevations are typical of advanced disease. When occurring alongside a fall- ing platelet count, reduced albumin concentration, and elevated international normalised ratio (INR), it signifies the development of clinically significant cirrhosis. Cholestasis effects lipids, and patients with PBC can have raised cholesterol as well as develop- ment of xanthoma and xanthelasma. However, patients with PBC have not been robustly reported to have an associated increased cardiac risk [49,50]. Individual risk factors for PBC identified through epidemiologic studies include mucosal infections (especially recurrent urinary infections) and cigarette smoking.
The hallmark for diagnosis of serological positivity for AMA, which target the E2-subunit of the pyruvate dehydrogenase complex (PDC-E2). AMA positivity is observed in more than 90% of patients with PBC [51]; immunofluorescence [1/40, or immu- noenzymatic reactivity observed during cholestatic serum liver testing, is highly specific to the disease [52]. Although AMA pos- itivity is a strong indicator of PBC in patients with otherwise unexplained abnormal liver biochemistry, AMA reactivity is only sufficient to diagnose PBC when combined with abnormal serum liver tests. Only one patient out of six with AMA positivity and normal ALP develops PBC within 5 years [17].
ANA are present in approximately 30% of patients with PBC. Some of these are specific for PBC ([95%), although have a low sensitivity. Immunofluorescent staining of nuclear dots (suggest- ing anti-sp100 reactivity) and perinuclear rims (suggesting anti-gp210 reactivity) are useful in the diagnosis of PBC in the 5–10% (depending on the assay) of patients with PBC who are AMA negative [37,51–54].
Immune markers should always be interpreted alongside clin- ical findings by an experienced practitioner to avoid misdiagno- sis. For example, some systemic diseases (particularly haematological disorders, and granulomatous hepatitis) have low incidental AMA reactivity.
I am also inconclusive for a PBC diagnosis. I have had a negative ama and ana test I had a few abnormal mixed with normal and now back to slightly elevated LFTS with a normal ALP. My dr said ALP and AMA are the two diagnoising blood work for PBC. My dr thinks I have NASH but i am not over weight I do have high cholesterol though. it sucks not being sure what this is but maybe its better to just be supervised by getting blood work every 6 months rather then be diagnosed.
Pbc
PBC levels
PBC diagnosis? AMA 125,1
