Confusion , is it PBC or not?

I was told a couple of weeks ago that I had PBC based on blood work. The dr. wanted a liver biopsy to stage it and to determine if I had an overlapping of Autoimmune Hepititis. So after a few weeks of being in panic mode, scared to death, and reading everything I can on the internet about PBC, the nurse calls from the Dr. office with my liver biopsy results. She says there is nothing there to indicate I have PBC. No damage, scarring, etc. She said I did have fat deposits indicating Fatty Liver and the Dr thinks that is why my blood work indicated I had PBC. Is that possible? I don't understand enough yet about what they look at in the blood to know. I do know from my reading, that alot of people are diagnosed from the blood work, and they don't have a biopsy at all. So, does anyone know if fatty liver can lead to a false PBC diagnosis? Should I seek a second opinion, because at this time he does not intend to treat me for PBC. Could it be possible that they caught it early enough that I don't have liver damage. I know when he told me I had PBC, and I read the symptoms, I was like..yep, that is me. Fatigue and itching at night. Symptoms for Fatty liver does not include itching. Also, I have this pain under my left rib, and I have read on this site where several others do also, even though, like me ,they don't know why, possibly enlarged spleen. I could use any advice you have for me and if you can recommend anything I should talk to the doctor about or questions I should ask I would appreciate it. I go see him again on 6/24. Thanks in advance for your help.

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  • Get a second opinion, ask to be referred to a consultant who specialises in PBC. My diagnosis was purely on symptoms and blood work. My LFT (liver function test) was "off" and the AMA

    (Anti-mitochondrial antibodies) are in my blood, together with the bone pain, fatigue, itching etc it was PBC. I still haven't had a biopsy as the consultant said it isn't necessary for diagnosis. Good luck x

  • Hi Tammib,

    So sorry you are being put through all of this, and that it is so confusing.

    If you are in the UK you can ask for a copy of all your tests and blood results, so you can see exactly what they have - and have not - tested for. I just ask the GP's receptionist - if it is done soon enough after the tests there should be no charge (or maybe a small charge for photocopying): if it's beyond a particular period, they may charge. Once you've got the results, I would contact the trained advisors at the 'PBC Foundation'. The 'PBC F' hosts this site on 'Health Unlocked' and you can see a link to the 'PBC Foundation' website at the top of this page. Once there, you will find email details and phone numbers to contact their trained advisors, who will be able to talk you through all of the results.

    It sounds like a second opinion might be in order, but it might be better if you can have it all fully explained to you, first. So, maybe see what the PBC F people say, and then go back to your Dr armed with more info and questions. Also, get a good friend or relative to become as clued-up as you, so you can take them along for support, and in case you get nervous or forget something - it helps to have all questions etc written down.

    It does depend on what they have already checked and ruled out. For a 'formal' diagnosis of PBC, 2 out of 3 diagnostic criteria are needed:

    1) the presence of antimitochondrial antibodies (AMAs*) in the blood, and/or :

    2) abnormal blood s/ liver function tests (lfts) which are typical of PBC**, and/or :

    3) a biopsy that shows scarring and damage to the tiny biliary tubules that run throughout the liver - and other damage consistent with PBC.

    [* Quite a lot of people can have AMAs, but don't have PBC. That's the state I'm in. Usually, people who are diagnosed on blood work alone, have both AMAs and abnormal lfts. If you only had AMAs, but the liver function blood tests were fine, that could be why they did the biopsy, to rule out liver damage.]

    [** NB when first diagnosing someone, my Specialist is most concerned with high levels of GGT and ALP]

    Also, they should have run tests to rule out all possible other liver conditions, as some of them include itching and fatigue. Further, they should have done tests to check for other autoimmune conditions, as fatigue is certainly common to many. My GP checked me for everything under the sun, and my annual blood tests always include a lot of other checks, just to keep and eye on my thyroid, and general blood work.

    Finally, even if it is only fatty liver, they should have given you details of how to deal with that, diet, exercise, no alcohol etc.

    Sorry this is so long, I hope it helps, and that you get some concrete answers, soon. Meanwhile, try to treat yourself, coddle yourself, have fun and try not to worry. Stress is the worst thing for all autoimmune conditions, so above all - give your self a good time, while being firm and systematic in checking out results and GPs - so looking after yourself all ways - we're worth it!!

    Take care,

    Gritty

  • Hello Tammib.

    Like Tigger858, I didn't have a biopsy or have been offered one. I was diagnosed in 2010 due to first having symptons of itching and fatigue and then it was found my liver function test (LFTs for short) were higher than normal and then months down the line the consultant I saw on my first hospital appointment took an antibodies check. The ones known as antimitochondrial antibodies (AMAs for short) were shown to be in a high titre (measure) so with my symptons, blood work and antibodies I was diagnosed with PBC and started taking urso. This seems the norm now, especially in the UK where biopsies tend to only be undertaken if there is any doubt as to a diagnosis of a liver problem.

    It is said that PBC can be diagnosed definitely from a biopsy but what is referred to as staging of PBC can be a bit doubtful due to the biopsy site. The liver being a large organ might have a normal part or notso in various parts. This is one reason why I'd not have a biopsy now and moreso it won't change how we are given urso for PBC currently. I know it seems in the US a biopsy seems the norm even if a patient is diagnosed via the route I was. I also think personally that some doctors being curious like to find certain things out so this is another reason for biopsies.

    If there is anything you can think of prior to going to see the consultant jot it down and ask when you go. I say write it down as you can forget once there. As daft as it might sound to you still ask. I did ask pre-diagnosis about diet and then following but I found that being newly-diagnosed the consultant on that appointment just seemed happy to say a bit about PBC (I did inform him pre-diagnosis that I had read a bit about PBC in first a library ref book and then I did find the PBC Foundation online at the time) and he said he'd take things from there. Personally I find I dont' want to waste valuable time on thinking what might happen in the future with having PBC as it might never be so and to me unnecessary worrying in the long run.

    If you've not already done so, check out the free dvd from livernorth.org website in Newcastle (UK). Once received it does contain some informative information and will give you pointers for your hospital appt with questions to ask. There is also a leaflet on PBC to be found at British Liver Trust site.

    PS Apparently any liver condition can show similar symptons.

  • Hi Tammi, you've received good advice from others here. I just wanted to let you know that I also tested positive for AMA (anti-mitochondrial antibodies), which are strongly associated with PBC. I suspect that is the case with you as well, but you really need to get copies of your test results and have it explained to you. (In fact, you should get in the habit of always getting copies of any and all medical test results, and keep a file). The presence of AMA alone isn't enough for a diagnosis of PBC, there would also need to be abnormal liver function tests (LFT's) OR an abnormal liver biopsy. In my case, my LFT's are fine so they did a liver biopsy which was also normal. 1 positive out of 3 things checked = no PBC diagnosis. They do keep a fairly close eye on me and said it's possible it may still develop, but it's now been 3 years and the blood work remains the same. I do have a lot of other autoimmune issues going on, so perhaps that has something to do with the positive AMA/M2. Ditto on the advice from GrittyReads to do your best to avoid stress, and I'd add a suggestion to take this scare as an opportunity to commit to as healthy a lifestyle as possible. Little to no alcohol, cut sugar as much as possible, eat healthy, real food as opposed to processed junk, etc. Your liver will thank you. :-)

  • Thank you all so much. Im going to print this and take it with me when I go to the doctor so I don't forget anything. I had adnormal LFT, which led to the AMA test, and based on that, the Dr told me I did have PBC, and that he needed the biopsy to stage it and to determine if I had an overlap disease of Autoimmune Hepititis. He said often when you have one autoimmune disease, like PBC, you will also have Autoimmune Hepititis, and that he wanted to determine if I had an overlap before he began treatment. They told me when I had the abnormal LFT that it showed up that I had Fatty Liver too, so based on that, I thought there was one blood work result that showed Fatty Liver and another one that stated abnormal Liver Functon Test. And due the the abnormal LFT, they ordered more blood work to determine why. So, I was confused when the nurse said, well maybe the Fatty Liver made the LFT to be abnormal. But even if it did, would it affect the AMA?

  • Hi Tammi,

    AMA is very specific to PBC, so it make sense that they doctor would order the biopsy as the next step. When it came back normal, it shows that you don't have PBC yet and you may fall into the category of people that are AMA positive but never progress to have any symptoms. They should continue to monitor to catch symptoms early if they ever decide to appear.

    Another option would be to get a second opinion. My case is similar - I have fatty liver disease and high AMAs with fatigue. No biopsy. My doc went ahead and diagnosed me with PBC even though I only sort-of meet the criteria. He said they caught the PBC very early, and I have no damage to my bile ducts. This allowed me to start on Ursodiol which relieved a lot of symptoms for me. I have no more digestion issues, no more swelling, fatigue is much better, and my cholesterol is even down (the liver regulates blood cholesterol). I am glad my doc took a more aggressive approach to diagnose me, but that is not appropriate for every patient. Its a judgement call.

    LFT - Liver Function Tests - is not one blood test. It is a panel that measures multiple enzymes and blood markers. High AST and ALT point more toward fatty liver disease, while ALP and Bilirubin point more toward PBC. labtestsonline.org/understa...

    AMA is not affected by fatty liver disease or any other liver disease. AMA is an autoimmune antibody that is programmed specifically to attack the cells that line the inside of your bile ducts. Most people do not have this antibody. When PBC develops, the body starts attacking itself and signs of damage start showing up on your blood test results, symptoms, and imaging. So if you have AMA but no damage, its like the gun is loaded but the trigger hasn't been pulled.

    I would ignore the nurse. She's probably just trying to help, but she's not a doctor, and she's making things even more confusing. (To be fair, I'm not a doctor either, I was a surgical tech for 7 years). The doctor needs to hand you a print out and point at the test they are talking about, but they hardly ever do that unless you specifically ask.

    "She said I did have fat deposits indicating Fatty Liver and the Dr thinks that is why my blood work indicated I had PBC." Nope. This does not make sense. Its like saying, "you failed your eye test, so I thought you had hearing loss". Makes no sense. Hopefully, this is the nurse misinterpreting or overgeneralizing what the doctor is saying. If your doctor is the one confused, get a second opinion with a gastro or hepatologist.

    "does anyone know if fatty liver can lead to a false PBC diagnosis?" No. These are completely separate diseases with different lab profiles. It might be helpful to know if your AMA's were borderline positive or if you had a high number. For example, mine were 118, where a positive score would be anything over 25. If your score was borderline, say 27 or so, then perhaps test again at a later date.

  • Chynablue,

    That is one of the best explanations, that I have seen on here. Well done!

  • I never had itching at all, some chronic fatigue. They first diagnosed by blood work. Elevated liver emzynes. Alkaline phosphate. However the big indicator is anti mitochondrial antibodies. After it was abnormally high they scheduled liver biopsies. The biopsies showed no damage. So it was so very early I was a stage 0. They are very hopefully it was so early that I should expect a normally life expectancy. So if they haven't checked your AMA'S they should.

  • I agree with so many of these posts & absolutely agree that you should get a second opinion from a Hepatologist. Get copies of your blood tests, etc, & go over them with this doctor at your next appointment. Ask him what clinics/hospitals in the area deal with liver issues, does he know any specialists that he can recommend , etc and get a referral.

  • Hi Mandy here from Canada well I was just diagnosed 2 months ago But 10 years ago blood work for liver was out so had liver biopsy came back fine so doctor just said he didnt know. Ok fast forward to 2 months ago same blood work but sick last 10 years no liver biopsy this time as doctor said oh ya could still be normal as its bile ducks damage first depends were they take biopsy from. New doctor this time medication now feeling much better.

  • Hi, Tammib.

    Any news?

    I am working in Canada/USA this week but a quick call to the office might just help you.

    01315566811

    Yours,

    Robert.

  • I'm sorry Robert, I just now got your message. I hadn't been on in a couple of weeks.

  • I did go back to the Dr on Friday, and saw a Physician Assistant. She said my biopsy indicated I had fat deposits in 80% of my liver. I'm thinking, can they really tell that by taking three samples from one area. But anyway, she did not rule out PBC. She said that they feel like the fatty liver could be throwing the markers off and indicating PBC. Or I could have PBC and they have caught it before any damage has been done. I have my blood test and the numbers. I left them at home and I'm at work. I will get them and post the numbers tonight, maybe someone can help me make sense of them, and give me your opinion. I really appreciate everyone taking the time to post and give me advice. It really is helpful. Thank you all very much. The plan is for me to try to lose some weight 10 -15 lbs and they are going to redo the blood work in six weeks. I have already lost about 10 since the initial blood work. So hopefully, 20 -25 will be helpful. She said they would look to see if my numbers or decreasing, increasing, or staying the same.

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