New here - possible PBC Diagnosis

Hi. I have been dealing with abnormally high liver enzymes for a couple of years now (and since I avoid the doctor like the plague, who knows how long I have really had them), they were found by my insurance provider when I applied for life insurance. I had many blood tests, an ultrasound and MRCP last year to find out what my diagnosis was, and never heard back form the doctor on them, and as I felt fine, figured it was nothing to worry about. I was dealing with my mother in the final stages of cancer and wasn't that worried about my own health.

Now, I have a few symptoms that bother me, I have had a few sleepless nights of my legs and skin being swollen and itchy, almost like hives, but by the morning, nothing; I have been more tired than usual, my face is broken out and my skin texture bumpy, I bruise very easily, (I recently had a small tattoo and it bruised all around it and I have a few tattoos, that has never happened before) and my eyes are dry all the time, but I figured it was because I switched contact brands. These things on their own did not seem unusual, but as I thought about it, together they seemed unusual, so back to my GP I went. I have already had my gallbladder removed a few years ago. She sent me for more blood tests, my liver enzymes are higher now than previous tests, and all the specific tests have come out negative including my AMA, but my doctor seems to think that now that I have had some symptoms that are bothering me, that I probably have PBC. I have a biopsy scheduled June 28th for confirmation, my GP said if PBC is positive she will start meds, as I may have to wait 6 months to a year to see a specialist.

I found this site while researching this disease and I just wanted top say how helpful I have found this information and all of your experiences. I am nervous, my family has had its share of illness and death and I do not want to add my own and some days I feel sorry for myself. I have just lost both of my parents in just over a year and I am the primary caregiver for my 3 year old grand-daughter (the love of my life) and plan to be around long enough to give my children the grief that they have given me back. Now, thanks to your group, I feel hopeful. I know that even if it is not PBC, it is nothing good, all the simple answers have already been ruled out. Fingers crossed for my biopsy, which right now seems like the scariest thing I could ever encounter, it seems risky, but the only way to get my answers. What is biopsy recovery like, will I be sore for days, will I be required to miss more than one days work, these are the questions that I now have.

26 Replies

  • Hello AllieCraw.

    Well due to you already having an antibodies check, the AMAs that tend to be specific for PBC, that showing negative, the next step tends to be having a biopsy for diagnosis.

    Back in early 2010 I started to itch that was 24 hours a day and didn't think much of fatigue that I had. I was 45 at the time. Two weeks after starting to itch and it not vanishing, took myself to my GP who then did blood work, the LFTs (liver function test) was one. Mine were found to be above normal range and from there on each visit he performed other bloods (one for Wilson's Disease that is copper overload, also one to determine if bone or liver issue as you can have higher than normal (or elevated) LFTs). I was then sent for a scan (ultrasound) that showed my liver and surrounding organs to be pretty much normal. My bile ducts could be seen quite clearly apparently.

    I was then referred to hepatology out-patients at the local hospital. The appointment took 13 weeks to come and in that time I was continuing to itch. I had the AMA check on my first hospital appt and 6 weeks later I got a call from the GP surgery to say to go in. The consultant had written to my GP informing him I had PBC and to prescribe urso. I saw the hospital doctor 8 weeks later. I've not had a biopsy due to having symptons, elevated LFTs and also the AMAs being found in what was considered a 'high titre' for diagnosis.

    Now you can have other liver disorders and have the same symptons. There is another liver condition known as PSC and there is also one known as AIH. I am sure that a biopsy would either rule something out or diagnose.

    Meanwhile the only thing I can say is to try to look after yourself as best you can. Like me you could well have done up until all this. I was surprised that in my case in the time I was waiting to see the consultant on my first appointment I didn't have any further blood checks and the ones I had done at hospital that day my LFTs had actually dropped naturally though still above normal.

    Anything can go through your mind whilst you are waiting to find answers but given PBC is said to be slow progressive I am sure that your bloods are not alarming abnormal or you'd probably have been seen much sooner. I still itch even on urso for over 5 years but it changed considerably. I tend to feel prickly at odd times in the day (when sitting and not doing much moving - I tend to be on the go all the time) but the itch surfaces around 11p.m. and then vanishes around 6a.m. now. I don't appear to have developed any further symptons except my skin looks more tanned these days that correlates with a liver condition.

    I hope you get your answers at some point soon after the biopsy. Sorry I cannot explain much about a biopsy as I've never had one. I am in the UK and it's not required if you can be diagnosed without one.

    I describe the itch as like rolling nettles or being attacked by wasps myself. Some get the something crawling beneath the skin sensation that I know well. There is never anything visible when I feel prickly though as it is beneath the skin. Supposed to be used bile that seeps to the skin surface to escape as it is toxic so a form of defence.

  • I guess I don't understand how they diagnosed PBC without a liver biopsy. What did the doctor look for that gave a positive diagnosis for PBC? I am concerned because I have positive AMA,s and my liver test are higher than normal but my doctor needs a biopsy to confirm.

  • Hi littltonya. Biopsy seems to be the preferred route in the US but not so much here in the UK. I'm waiting for a final diagnosis but have all the markers for PBC i.e. raised LFTs and positive for AMA2. My specialist has organised for an ultrasound a fibroscan to confirm but he seems pretty convinced it's PBC. He doesn't like going the biopsy route unless absolutely necessary and from reading the information from the PBC Foundation it sounds like it can literally be a bit hit and miss whether they happen to sample the 'right' bit of the liver. I guess the people who deal with liver diseases have a better insight and take all factors and symptoms into consideration. My only current obvious symptom is mild fatigue, thankfully. The time between initial appointment with the specialist and my ultrasound is around 13 weeks - so a bit of a wait but it's not stopping me from carrying on with life (albeit I've now stopped drinking to give my liver the best chance). Hope this explains a bit for you.

  • Hello AdeleMalcolm.

    Apparently PBC can be diagnosed via a biopsy due to the cells in the liver having certain changes that are throughout the liver. It is the staging of PBC showing any liver damage that isn't cast-iron as certain parts of our liver can have damage and others not and as we know we can all get by (with a compromised life) with a small part of our liver being healthy.

    I think in the US patients who tend to be diagnosed with PBC without a biopsy using the 3 factors then seem to go on to have a biopsy for some staging. I know had I been asked to have one following being diagnosed 2010 I'd not have agreed due to it not apparently being accurate.

    I saw a programme on tv (I am in the UK, programme was British) a couple months before I was diagnosed and 2 men in a studio that was live on air were having liver scans. One man who was very overweight was shown to have a fatty liver and the other was an alcoholic and it was pointed out that he had got to a stage of cirrhosis. So to me an ultrasound can show the liver and how it is looking.

    Is this the first ultrasound you are having so far? Just that if you are in the UK it seems an excessive a wait. I was informed by my GP to have an ultrasound long before I went to hospital and was diagnosed there with PBC. I got an appointment for the scan within a couple weeks of the GP wanting me to have one but it was then almost 6 months later before I was diagnosed with PBC. I had 13 weeks to wait after the GP referral to see the hospital consultant which would have been 15wks prior since I had the ultrasound.

    I found it odd that the first hospital appointment I had with the consultant he asked me questions and then examined me before saying he was requesting blood work and antibodies blood tests as there was a small ultrasound machine in the room but he never even used it as I thought he might have. He did go through the ultrasound scan I had 15 weeks prior and he said he could see my liver and surrounding organs looked normal and then pointed out he could see clear bile ducts. I suppose with PBC being said to be slow progressive and from the scan it didn't throw up anything alarming along with the blood work.

  • Hi peridot. Thanks for the clarification.

    As far as my wait is concerned I first saw my own GP in November last year when he was concerned about my blood results but he had to wait to find out the outcome of the AMA test. He got that in February but I was out of the country until early March, so when I went back to him he'd already referred my to the specialist unit in Kings College Hospital (London) and I saw them in April. I was told they were booking through to September!!! The specialist told them to overbook so I ended up with an appointment in July for both the scan and then the discussion with the consultant. All in all it's been a while in progressing the full diagnosis. In the meantime I had more tests by my own doctor and then the consultant - seemed like the latter wanted his own 'base line' to work from. But he did a whole raft of tests at the time so he could be surer of the diagnosis. I've no idea what the outcome of the ultrasound will be - just hoping it confirms very early stage in disease progression (given light symptoms to date).

    As the saying goes - time will tell!

  • Wow, Peridot,

    You know so much about this disease. I learned more from reading your posts than I have in my research.

    Thank you.

  • Thank you for your kind words AllieCraw.

    I have tried to find out things about this PBC since being diagnosed. Can't say I take much notice these days as I think once you start clocking up the years having PBC (I'm 6 years end of this year) and seem to be living on an even keel with it I think it can be how you can become.

    Yes things could change but meanwhile I still find it best to just keep on trucking away and getting along with life. I still dread the evening when the prickles start first and then the itch surfaces around 11p.m. and but for this itch I'd not actually know I had PBC. I'd never have seen a doctor anyway if it had never appeared.

    I also think that being the person with the PBC we tend to know exactly how someone else is with certain symptons. Someone without PBC in this case can only imagine.

  • Hello Littletonya.

    PBC nowadays can be diagnosed without the need for a liver biopsy if the patient has 3 factors. The first being symptomatic, that is having certain symptons of a liver condition. I went to see my GP with severe itching and due to there being nothing visible on the skin at first he reckoned might have been allergy so an antihistamine is recommended. Blood work is then taken of which the LFTs (liver function test) was found to be higher than normal which is the 2nd factor.

    Then the 3rd factor that you have to have is to be found with a certain measure of the antibodies anti-mitonchondrial antibodies (AMAs for short). Mine were considered 'high titre' (measure) so from t his the consultant diagnosed PBC. Apparently if there is any questionable doubt regarding certain issues a biopsy is performed. Some patients are found with abnormal or elevated LFTs but do not have any symptons (asymptomatic) and may or may not have sufficient or a negative result of AMAs. So in this case a biopsy is done as that apparently shows up in the liver cells throughout the liver.

    It is said that a staging of PBC can be done via a biopsy but in my view the liver being a large organ might only show certain damage or no damage at the biopsy site so to me I have no interest in knowing. I just go with how I feel and am pretty confident that a simple scan and blood work can show a pretty up-to-date picture of how I am. Plus any further symptons that might develop would perhaps too.

  • Hi peridot!

    I had sever itching on my hands and feet for about a week. By the time I got an appointment to see my Dr my itching was mostly gone, she figured it was the antihistamines I was taking and I had an allergic reaction. But the next week I started vomiting, nauseous, fatigue, my eyes and skin started to turn yellow. She took blood and my alkaline phosphate, AST,and ALT,s were alert high. I had an ultrasound and they told me it was good. So she sent me to a GI specialist. He wanted to retest my blood after 3 weeks to see if it was something I may have taken to cause this. At this point I was feeling much better, I was still fatigued but no itching, no nauseous, no yellow, so I thought I was over it. But my next blood work showed my alkaline, AST,and ALT,s were better but still a little high and my AMA (Mitochondrial Antibodies) were 50 and they should have been 0-20. At this point he ordered a liver biopsy. I am not sure if I need one, it's very expensive and if you don't need one to diagnose then I would rather not get one. I am just very unsure of what to do. Do you have any advise, you seem to know a lot about this disease. Thank you

  • Hello littletonya.

    When I first went to see my GP early 2010 with itching that had been persistent for a fortnight and was advised to take Piriton (I declined the prescription as asked what dose it was and bought over the counter saving myself several pounds), I took it for 2 days and felt pretty nauseous all the time, something I didn't prior to taking so I quit. Can't say in the short time I was taking it made a scrap of difference but then it wouldn't as it wasn't due to an allergy.

  • Please try not to worry....its good yo get a answet it stppped all the maybe its this maybe its not which is pretty stressful

    I had a biopsy 3months afterour son was born...i was told it would be as if id been kicled afterwards ..

    I felt nothing at the time of having it done and a slight ache afterwards.

    I was breast feeding our son and had to lie still for a long time afterwards...which was the crazy bit as the nurse had to hold him upside down for me to feed which we did sort of manage !!!

    So get a diagnosis then you get treatment if it is pbc.theres also a new drug coming to europe in 2017.good luck.cazer.x

  • Thanks Cazer,

    I guess I could bring a book and catch up on my reading, there never seems to be enough time for that. I am in Canada by the way, so I am not sure what drugs they usually use here. My GP said that if the biopsy confirmed the PBC, should would start the drug treatment right away, as I am awaiting an appointment with the specialist. I live in a small town and would have to go to the nearest city for the specialist and there is a long wait to see him.

    Nice to find a place where there are people in a similar position. Thank you for sharing.


  • Hi AllieCraw,

    So sorry to hear you are having to go through all of this. Can I ask ... are you in the States?

    I fail to understand why an appointment with a specialist should take as long as your GP suggests. I saw a leading PBC specialist - in another part of the country - in much less time, and I'm a low-risk person with no real problems ... It was worth it as he asked far more pertinent questions than my GP has ever done, and the blood tests etc he did were far more wide-ranging.

    The 3 'formal' diagnostic criteria for PBC (with 2 out of the 3 usually required) are:

    1) the presence of AMAs - usually sub-type M2 as this is the one linked to PBC.

    2) abnormal readings for the appropriate liver function tests (lfts) - for 6 months +

    3) a biopsy that shows damage to the bile ducts, typical of PBC.

    The presence of 1 and 2 are usually enough to diagnose PBC in most people, and if the common symptoms (eg: itching and fatigue, but there are a lot of other varying ones) are also present, that helps diagnosis - biopsies are done less often in the UK. It is also possible to have PBC without testing +ve for AMAs, but that only occurs in about 5% of cases of PBC. But in the absence of 1 a biopsy is usually offered. It is possible to have AMAs and not have PBC (I'm an example of that) but you would still be monitored. The high liver enzymes are more worrying, so it seems appropriate that a biopsy should be offered, but the checks to find out what is going on should be on-going, as all other liver - and autoimmune - conditions need to be ruled out.

    You don't say which tests you have, or have not had, or which lfts are out of kilter, but if you have checked out the PBC Foundation website, you will have seen details of the main one that are watched. You probably also know that the symptoms of PBC can be similar for many liver (and other) conditions, which is why a biopsy has been suggested.

    Personally, I would have the biopsy; but I would get copies of your results and see which tests and checks have been done - and not done, and then maybe come back to this forum, or talk to the trained advisors at the PBC Foundation (link to the website at top of this page). Also check out the British Liver Trust. I would want to ne sure that all other possible liver and autoimmune condtions have been checked for. I'd also want to know why such long wait for a specialist - NB try to insist it's a liver specialist, preferably one who deals in PBC.

    Good luck, hope this helps. Meanwhile, try not to worry: chill out, have fun, treat yourself (NB just not to alcohol and fatty etc foods!). Autoimmune illness thrives on stress and worry, so do anything and everything that makes you happy.

    Take care!

  • Hi GrittyReads,

    I am in Canada.

    My ALT and AST were both very elevated and only getting worse over the last year and a half. (That is how long my GP has been testing me) I have been tested for Wilsons disease, Hep A, B & C, celiac disease, fatty liver, as well as many others. My doctor and I did see a specialist last June (he was a locum to our area and was only in our hospital for a few months) have tested me for everything they could think of, my GP scheduled and followed through with the ultrasound, (she was thinking maybe I had an obstruction left over from my gallbladder removal, I don't) and the specialist ordered the MRCP (MRI) which I had last July, but he never followed up on it when he left our area and foolishly, neither did I. Once I started having symptoms that troubled me, I went to my GP again, she said the MRCP didn't show anything and then she scheduled the biopsy and put in a referral to see the new specialist. My biopsy is June 28th. Hoping for confirmation of PBC or different diagnosis and to find out how much damage is done to my liver so far, and then go from there. I do a lot of hiking with my husband and hope to keep doing so for a long time.

    Thanks for your answer. I didn't realize that I could ask for copies of my results for blood tests and other tests. I will do so from now on. I have not really had any medical problems until now (other than appendix removal and gallbladder removal). I am currently taking Cholestyramine to help bind the bile acid resin, my GP thinks it might help with the itching, which isn't severe but I have had a few bad nights. ugh.

    Again, thanks

  • Hi Ally

    I hate to scare you but for me the Liver biopsy was horrific. Maybe I have a low pain threshold due to PBC but this is one of the worst procedures I have experienced. I felt like I had been stabbed. It literally took my breath away and the procedure had to be repeated as not enough tissue had been collected the first time.

    Sorry to scare you but be aware, it's not an easy thing to go through.



  • Hi sandy.

    My liver biopsy was like yours, awful! Felt like I was stabbed right below my middle front rib cage. The nurse had said I shouldn't feel any pain, that it was a simple procedure. Yea right!

    Well from what I have read most people don't feel pain but in my case there was an exception. I was glad to hear I wasn't the only one who had difficulty with the biopsy and I wasnt just being a wimp.

  • Thx for reply. Yes, was not a pleasant experience at all!

  • P.S On a more positive note, recovery is quick and you can move around normally the next day. I wouldn't dart into exercise straight afterwards though.

    Good luck


  • Hi Sandy,

    I am nervous but have high pain threshold, so hopefully will be okay. I will take a book and just try to rest. Hope they do it right the first time. Eek.

    Also, that is why my biopsy is June 28th; the lab was booking mid June and I have had a hiking weekend planned to the US for months now and was concerned about having to cancel it, so my GP arranged to have my biopsy the day after we return. :)

    Thank you for sharing your experience.

  • Oh good!...rather have a few days off for recovery. Let me know how it all goes!

  • I am in the UK and had a biopsy about nine months after my gastroenterologist had diagnosed PBC. I had no problems or pain either during or after the biopsy. I was put on Ursodeoxycolic Acid Tablets straight away when I was diagnosed. This was in 2011. First went to see GP because of fatigue who referred me to the hospital after blood tests which indicated something amiss with my liver. Sometimes I get a bit down about it all but most of the time I don't even think about it. Good luck with your biopsy and try not to worry. I will always remember my gastro saying to me - most people die with PBC and not of it!

  • Thank you. I try to stay positive, but every now and then I get nervous about how much damage has been done and I never go to the doctor unless necessary, but if I had made regular check ups, this probably would have been found long ago.

  • Don't beat yourself up about not going to the doctors. My specialist said I had probably had it for several years before I was diagnosed, and there was a slight possibility it could have something to do with my genes. I know many people don't think there are any hereditary factors but I believe everyone is still learning about this condition and hopefully more and more will be discovered. Perhaps down the line other treatments can be given and e fm a cure will be found.

  • AlliCraw - just wanted to let you know I also found out that my liver enzymes were high when I tried to get a higher insurance policy. I had all the same symptoms as you. My heptologist took a biopsy (tiny amount of pain). It confirmed PBC and the stage. I think I missed one day of work just because I was groggy.

    A lot of people don't get biopsies and from what it sounds like I believe it is a personal preference. The argument seems to be that they just biopsy one area but if that shows stage IV then you need more liver surveillance then others in the first stages. I am the kind of person who likes to be forewarned. I see no benefit in not knowing what stage your at. I like to have all the information I can about this disease and then be able to best treat it.

    As far as the itch, I was scratching the soles of my feet, palms and back so bad that one night I looked in the mirror and you could see scratch marks on my back and they were bleeding.

    I live in the states and I get hydroxyzine in tablet form. It completely takes away the itch. For the fatigue, which is debilitating, I take Modofinil (200 mg.) every morning. It helps but some days depending on how much sleep I get it works just so so.

    I think about it everyday but not all day. I still have a full life I just know my limits.

    As I tell everyone else, find the joy in your life, and don't let go of it.

    Good luck and please let us know how it went.


  • Calogia

    Thank you for your input. I too, am a bit obsessive about stuff and need to know everything ahead of time. Biopsy is my only remaining choice, and now that I know something is wrong, I need to know what it is. I am not sure what the meds used in Canada are, I am assuming they will be similar to others here, the side effects seem scary though. I also have a prescription for Hydroxyzine, in case of severe itch, haven't had to use it since I got it filled.

    Since the death of my parents I have been learning to live every day to the fullest. I have so many things I want to do and places I want to go.

    Thanks again.

  • Allie - it's funny all I say is I want to go to the Grand Canyon. Everyone in my family says go somewhere really exciting but I've always wanted to go there.

    Maybe someday.

    Good luck!!

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