Hi, everyone. I’m AMA-negative but I was diagnosed with PBC several years ago based on high ALP, high ALT, high GGT, high cholesterol, dry eyes and mouth, and osteoporosis. I recently had an abdominal ultrasound which showed that the gallbladder is 1/3 filled with stones (according to the technician) and that some bile ducts are mildly dilated (I don’t know which ones). My consultant doesn’t think the gallstones are causing any problems but I have loads of digestive issues including bloating, burping and constipation (despite a high-fibre, high fruit/veggie diet and high water intake). I have so much wind that it’s sometimes hard to eat and I’ve lost loads of weight. I don’t have excruciating pain but I’m very, very uncomfortable. I think my problem is gallstones because they run in both sides of my family but the consultant obviously disagrees. I’ve tried a low-fat diet which seems to help a bit but the thing that helps the most is eating frequent, tiny meals (very annoying to manage). Does anyone have any suggestions about a diagnosis or what I should do next? Many thanks in advance.
What should I do?: Hi, everyone. I’m AMA... - PBC Foundation
What should I do?
Get a second opinion with another consultant. I am not a doctor or in the medical field, but it seems like the gall stones cause issues so that you need to eat smaller meals. I know non pbc folks with gall bladder issues and they had it taken out.
Thanks, ninjagirlwebb.
Go back to gp... And explain all your problems... They can't just leave you...
Are you on urso... As this is also used for gallstones... Check your on correct dose... If not get it upped as this should help indirectly...
Small and often is recommended for pbc so stick with that... I know it's a phaff but it's easier for system to cope with, best cazer..
If you are negative for AMAs, but your lfts were high: ALP,AST,GGT, etc. then you should not have been diagnosed as having PBC without a liver biopsy being done.
The official guidelines / protocol for diagnosing PBC clearly say that 2 out of 3 diagnostic criteria have to be satisfied before an official/formal diagnosis of PBC can be given:
= amas and abnormal lfts, or
= amas and biopsy, or
= abnormal lfts and biopsy
I agree that seeing a different consultant is necessary. Get your GP to refer you to a specialist in PBC. this doesn't have to be private. My GP in Devon sent me to see a PBC specialist in Birmingham, when a local liver consultant had suggested I had PBC just because I only had AMAs.
Meanwhile, do talk to the advisors at the 'PBC Foundation' who host this site on 'Health Unlocked' . See links on Robert's posts to the right, above.
Hope this helps,
Gritty
Thanks, GrittyReads. I did have a liver biopsy and it did NOT show PBC. My consultant is a gastroenterologist with an interest in the liver, but he is not a PBC specialist. I will talk to my GP and the PBC Foundation. Many thanks.
What is your status now Gritty?
I don't have PBC, and I'm in very, very good health for my age.
I just have AMAs.
I have to have liver function tests every year, just to check that nothing is out-of-kilter, but they have always been excellent. Also my GPs have tested me rigorously if ever anything funny has happened; eg: several years ago I was very stressed and it turned out I had costochondritis (a weird inflammation of the cartilage of the ribcage). They were not certain it was that, at first (I thought I was having a heart attack), so they tested me for everything. But never a glimmer of PBC.
The specialist I saw at QE, told me that about 8% of UK blood donors are found to have AMAs, but the vast, vast majority of them of them do not have - and do not go on to develop - … PBC.
Great news
Confusing isn't it? I was given a biopsy to rule out other issues. Told it was PBC. That was 22 years ago. I have none of the lab work from hen. This last year, I had an AMA test and fibroscan preformed as my LFT's are super high and I wanted to know where I am at with this. Ama came back negative, fibroscan showed normal liver. So, the PBC diagnosis may or may not be accurate for you. Yes, they may need a biopsy. However, with all those gallstones, the LFTs may be skewed. Plus, there are other issues that raise your enzymes too. I have used STONEBREAKER by HerbPharm with great success to dissolve stones. Takes awhile, but nicer than surgery or waiting for them to pass. Get another opinion is for sure a great recommendation. Be well
Have you had a recent biopsy?
No...not interested in going through that again. Can't take URSO, so not treating it. Doctor says I have AMA negativE PBC. I'm ok with the way it is. Not chained to the diagnosis
What was your fibroscan score?
I'd have to look. It was a low normal plus no fatty liver
Hi, VeeWat, I had a biopsy about three years ago. They said I had a "near normal liver." However, a MRI several months before that said that the left lobe of the liver was shrunken and that bile ducts were dilated. Several doctors reviewed the MRI results but no conclusion was ever reacher.
Thank you, mrspeffer. What you said about the LFTs being skewed by gallstones is very interesting. I'm going after a 2nd opinion ASAP. Urso is supposed to help with breaking up gallstones, too.
Hope you get sorted x
Thank you so much for all your help and good wishes.
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