I was very fatigued, having bouts of itchiness, belching and having upper right quadrant pain. The pain reminded me of when I had gallstone blockages. I knew something was really wrong. When I went to see a gastroenterologist, my bloodwork showed that my ALT, AST, BILI were elevated and ALB was decreased. AMA was then ordered and was elevated. Because ALK PHOS wasn't elevated, he said I did not have PBC, even though my liver biopsy showed lymphocyte infiltration. It also showed I have a fatty liver which he was more concerned about. When I argued that a positive AMA is the hallmark test for PBC, then he prescribed ursodial for me.
I went to see a hepatologist next. Again, since my ALK PHOS wasn't elevated, he didn't believe that I had PBC and told me to stop taking ursodial. I believe that I have it and the reason ALK PHOS isn't elevated is because I am in the beginning stages of the disease and the hepatic cells aren't severely damaged yet.
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ginam
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I see that you posted a little while ago so thought I would just welcome you to the group. I am guessing you are new to the site and I see no one has posted a response yet. I suspect someone will come along in a little while who is more knowledgeable about the intricacies of diagnosis but if not an email to the PBC Foundation might give you some answers. This is the link for them pbcfoundation.org.uk/ Their web site is free to join and you can find contact details there.
I notice you are in the United States and wonder if you have been in contact with PBCers in America. pbcers.org/
They will know how your system works in the United States.
Can you get a second opinion? A hepatologist should know about PBC.
My own diagnosis over ten years ago was confirmed by a biopsy but showed me being asymptomatic. I was however at that stage given URSO.
Thank you butterflyEi. I have to find a new hepatologist since I received a letter from him that he was leaving. I think besides the PBC being caught early in my case, I take steroid for other autoimmune diseases that I feel is keeping the PBC at bay. That is great that you are asymptomatic. I have occasional slight pain but the itching drives me crazy. I do find that laying in the sun a few minutes helps. Thanks for the info and I will check them out.
I can understand you being confused, and I am surprised that more has not been done to ascertain exactly what is going on. I agree with butterfly and suggest you email the 'PBC foundation' or the US-based 'PBCers'.
However, the presence of AMAs alone is not enough for a diagnosis of PBC. About 10% of the population have AMAs and the vast majority do not develop PBC. I've been known to have AMAs since 1992, yet still have 'perfect' liver function tests and no symptoms of PBC and all other scans, tests etc. clear. However, the fact that your lfts are not perfect, and you had PBC-like symptoms does suggest something is going on, although it is not necessarily PBC.
I would always to prefer to see a hepatologist - rather than a gastro - and my consultant is one of the UK's leading PBC specialists, and he is happy that I don't have PBC. He is always most concerned at elevated ALP and GGT, but I don't know much about the approach if other lfts are abnormal.
What was suggested you do about the fatty liver? Have you been following that advice? Also what did the hepatologist say about this? Also have they checked you for all other possible liver condtions, as well as other autoimmune diseases? I think you may have to keep plugging away at this, until you get some answers, or the condition improves - eg if you stick with any fatty liver protocol.
Sorry I cannot be more helpful, but I would not automatically assume that you have PBC. If I were you, I would probably concentrate on getting the hepatologist to find out what exactly is going on, if he doesn't think it is PBC.
GrittyReads, my liver biopsy did reveal lymphocyte infiltration and noted eosinophil which is an autoimmune reaction as explained to me by the pathologist. That along with the symptoms and the AMA are good indicators. As far as the fatty liver, I was told to lose weight which I have lost 12 pounds. Hard to do when on steroids. Steroids can cause fatty liver and also high fructose corn syrup. I have eliminated all HFCS from my diet, actually 8 months before being diagnosed with fatty liver. I'm glad that you are PBC free and hope you stay that way. Good doctors are hard to find. You are lucky that way.
Welcome to the group. ButterflyEi has given you good advice.
When I was diagnosed over 3 years ago, my GGT, AST and ALT were very mildly elevated, ALP normal and positive AMA. A biopsy confirmed stage 1 PBC and when I asked my specialist about my ALP being normal she said it was just because it was so early. I was put on Urso which normalised my blood tests for around 2 years, then for the first time my ALP did become elevated. I am now on additional medication (fenofibrate) as I was no longer responding to the urso so well, and my liver function tests have again normalised.
If you have been taken off urso it would be worthwhile trying to get a second opinion.
Yes, your results are like mine. I felt that was the reason why my ALP wasn't elevated as it is early in the disease. The doctors in my area aren't very knowledgeable about PBC. I feel I know more about it than they do from all the research that I have done. I'll have to keep an eye on my liver enzymes. If they start to elevate again, I'll begin taking the URSO. I believe taking steroids for other autoimmune conditions that I have is keeping the PBC at bay. Thank you!
Hi how difficult so sorry conflicting information from doctors, my situation was no elevated Alk Phos. My liver biopsy was positive stage 2 PBC positive AMA elevated liver enzymes but what started it all was severe right upper quadrant pain with bloating , let us know how you are doing ....
Yes Michiganpbc, I had upper right quadrant pain too, along with belching and slightly elevated AST. I felt like I did when I had gallstones. I knew something was majorly wrong and this is what prompted me to go see the GI. Then my ALT and BILI were also elevated but not my ALK PHOS. When the positive AMA came back, I started reading up on PBC. That is when I was able to figure out why I had been itchy for 2 years prior and I still am itchy. I am happy that my liver enzymes are back to normal but my TBILI and DBILI tend to stay slightly elevated. You hang in there, too and hopefully someday soon there will be a cure for these horrible autoimmune diseases that afflict so many. More research needs to be done in this area.
Yes you are right more research is needed it falls under the category of rare diseases so not too many are interested in rare diseases as not much money can be made from it it's always about the money it seems at least here in the United States. I asked my liver doctor if she is doing any research into PBC she said no I go to a major research medical center University Of Michigan. If it was cancer we would see all kinds of research going on everywhere....
Please everyone don't take that statement the wrong way or out of context, it's from what I see here in the states, and gathered after my own research into this topic.
I also for the past four years have had elevated alt, ast, and alk phos. Along with that moderate to severe ruq abd pain espically after eating, indigestion, nausea, slight itching. At first we decided it was caused by Sarcoid and was being treated by a rheumatologist with Remicade. I felt so much better while getting those infusions. Even my hair stopped falling out and my finger nails stopped breaking. Now my Gastro has decided he has no idea what the problem is. He just performed a sphincterotomy of my Sphincter of Oddi because it was causing my Common bile duct to be four times bigger than normal. Why that wasn't caught on the many scans, MRI's, and ultrasounds is beyond me. One test says I have stage 4 liver disease and the next says stage 1 and a third says granulomas present. So I have decided that I definitely have Sphincter of Oddi dysfunction which would account for all the pain I have and also for the elevated alk phos, but I am not convinced that besides that there is either PBC or Sarcoid. About 6 months ago I tested negative for AMA. But at the time of the test I was having the Remicade infusions which are suppose to keep your body from reacting. When I see my PCP on Thursday I will be getting him to order a whole bunch of new labs. It's awful when you feel like you have to go in and tell the doctor what blood work needs to be done. After this last surgery I fired that Gastro because I felt like he wasn't taking my liver pain seriously. They all look at you and say "The liver doesn't feel pain". I actually told him over the phone about 4 months ago that I thought I had SOD. All the symptoms and most of the blood work pointed to this and all he could say was SOD is very rare. I was thinking yea right unless your the one suffering through it. Anyway I'm sorry went off in a tangent. What I am saying is I will again have all the autoimmune labs drawn for various disorders because I have had no drugs for about six months that could artificially alter the results. The web site also said that taking NSAIDs could also alter my results. Im afraid to just lay back like a fool thinking I am Scott free only to find out in 2-3 years that I now have Cirrhosis.
There is pain in the liver area from PBC and other liver diseases, it is documented in a few places if you do a web search for liver pain it should come up, this was my only symptom that I had and took myself to the GI clinic then liver doctor, it was mentioned that it is the capsule that holds the liver that can cause the pain, not sure if anyone else has the specific explanation here.
This is one reason why the disease is misdiagnosed like mine was for years doctors aren't trained to think the liver area has pain with PBC. I told my liver doctor that it was my only symptom and a study I read can't remember which one mentioned that 17% of patients with PBC reported liver area pain also known as Right upper Quadrant pain.
Absolutely my pain is and always has been caused by the liver. Directly /or indirectly. It was the doctors namely my Gastro and Rhuematologist who look directly at me and said the liver doesn't have pain. Right buddy whatever. All I known is this pain, bloating, nausea that I have every day and becomes severe a few times a week. Bad enough that if I get my labs drawn at the time they will all be over 500. Honestly if he didn't find my cbd really dialated and my SOD so tight he had to cut it just to get into it I would still be sitting here with no answers. You were saying that you had a different autoimmune disease. Would you mind telling me what that is. I was diagnosed with Sarcoid in 1992. My daughter has EDS and my doc suspects that I have it also.
I first started out with Hashimotos and then type 1 diabetes which is autoimmune since I am positive for anti GAD. I've been afflicted with bone pain for 35 years which involves peripheral joints and all my flat bones. It's been travelling up my spine and wrapping around my ribs. I just recently had costochondritis which pain wise was equivalent to having broken ribs. Every rheumy kept saying I had fibromyalgia. With that you don't have swollen, puffy joints and inflammation that is shown with a high CRP. The only known disease out there that affects flat bones is ankylosing spondylitis which affects females differently than males whose spines tend to fuse. Since I have gone through menopause, I have gotten so much worse which makes me think that hormones play a role in why females differ from males. Ok, I just looked up and noticed my font changed and I have no idea what I did that made it this way. Anyhow, I'm not as familiar with sarcoidosis as I am with EDS. Before my joints became swollen and deformed, I was very hypermobile. I could do things with my hands that no one else could do. I also scar funny and have very prominent veins in on my chest. What class does your daughter have? Was she genetically tested? I don't have enough symptoms of anyone group to say that I have it. Maybe just a touch.
My daughter is I think class III hypermobile. Immediately following the birth of her son she became so much worse where at times she couldn't get out of bed. She dislocate her hips, shoulders, elbows for no apparent reason. She ended up going to see a geneticist in Maryland who diagnosed her. Her insurance refused to pay for genetic testing but the doctor was very confident due to all of her symptoms.
As far as thinking you don't have it you named three of the classic signs for the hypermobile type. The funny dislocating party tricks is a big red flag. Also as with every other disease it affects people differently so you may indeed have the hypermobile type but yours did not progress to where it is glaring. My PCP and my daughter believe that she got it from me because of my very white, very soft skin, prominent veins and flexibility. Again I don't even come close to how bad my daughter is so I chose to follow my liver problems first. But I often wonder if my low tolerance for pain could be caused by EDS.
Also if you have biological children and see that they also have the same issues that's then a real good reason to find a doctor knowledgable in diagnosing EDS and see what they find.
My daughter tore her labrum and had to have it surgically repaired. He told her that her other shoulder was extremely loose too and that it was inherited. So, you could be right. Although she can't do the party tricks like me.
There you go!! It would not surprise me if you have EDS especially since your daughter has lose joints. She needs to be extremely careful when engaging in any type of contact sports. My daughter dislocated her hip and was taken by ambulance to the ER and told the doctors there what was wrong and they did not believe her. They said no one can just dislocate a hip like that. They were real jerks.
It goes to show you that doctors don't know everything there is to know. That is why I'm on my 7th rheumy (think I'll stick with this one) and I won't go back to my GI doc because we don't get along. I think he is intimidated by the fact that I know more about PBC than he does. I feel sorry for your daughter. It's hard trying to take care of ones self when you are broken, but to have to take care of a child when they can't understand that you are ailing is even harder.
Well I took care of the baby for the first two years of his life. He was so bonded to me that he would cry anytime his father came to pick him up. Then because of medical bills, perscriptions they couldn't keep up with their bills so they moved in with his mom and dad so there were then extra hands to help her out. So although not a great situation for her he gets more than his fair share of attention from his grandma and grandpa. Like going to the Y all the time then joining the swim team and now taking horse back riding lessons oh and he just joined the Boy Scouts.
Also I wanted to say that it is entirely possible that your alk phos is normal due to your steroids. When they first found my elevated labs we did a test with 6 days of prednisone which normalized all my labs.
Steroids do help by getting rid of inflammation and calming down the immune system. I'm due to start a biologic like Enbrel for the ankylosing spondylitis and I am wondering if it will help stave off the PBC. But before I go on it, I need to get a knee replacement done. I'm just totally falling apart. LOL Oh, and I forgot to mention a sensitive condition up above but after menopause, I started with itchy, cracking, bleeding skin around my vulva. Biopsy showed inflammation. Autoimmune again. Lichen sclerosis. Doctor prescribed, what else, steroid cream.
I was getting Remicade infusions because everyone thought my liver issues were being caused by that. I loved it. It took care of all my joint pain, my hair stopped falling out and my fingernails became much stronger. I really want to restart the med again but need to try to see if we can make a valid decision about the diagnosis. Remicade is usually used for people with RA but my rhuematologist says they are seeing a lot of encouraging results with controlling Sarcoid of the liver. I believe it was working because after three years even though I had god awful labs that whole time the damage to my liver was minimal. At least that is what the biopsy says. I also about two years ago developed extreme vaginal dryness that was so bad that I would start bleeding from the slightest touch. Sex was so extremely painful even with lubricants. I had my tail into see my gyn doc as fast as possible and he started me on Estrogen vaginal suppositories. Then I started with dry eyes, mouth and really believe I also have Sjögren's syndrome but again when they tested me for that I was on high doses of the immunosuppressant.
I know when I'm off steroid, my CRP which is an indicator of inflammation will be sky high. When I go back on it, my CRP comes down, never normal but reduces it in half. I so want to stay off the steroid because it causes excess stomach acid and gives me an ulcer. It also makes me eat more and gain weight. In one way I'm looking forward to going on Enbrel but also afraid of acquiring infections. Boy, there is no end to all these autoimmune diseases. Not only that, it seems if you have one, it multiplies into more. More is not always better. I believe vaginal dryness is also part of SJS. You really should be retested when not immunosuppressed.
Yes I see my PCP on Thursday and I will be handing him a list of labs I want redone. Good thing he is a great guy because some doctors would not even let me suggest what needs to be ordered.
Honestly I stay as far away from steroids as possible. Like I said Remicade was wonderful. I felt so much better while taking it. As far as infection is concerned I just used common sense and tried to stay far away from anyone who was not feeling well. I had no problems. Before the Remicade I was own Imuran and that drug dropped my white count to 2. Had to stop that one. That was one nasty drug. I always felt awful when I was taking it.
Maybe if I had lung issues or swollen joints I would cave in and try a shirt course of steroids but it really is my last choice and only when every other avenue is attempted. I just feel that taking prednisone is replacing one illness and causing 3-4 more. Like diabetes, weight gain, bone loss etc.....
I just recently was dx with PBC and out on ursoliol then was ordered more blood work....just got results on line ( haven't been back to dr yet ) all lab work was normal !! Even my alk phos was normal ! I'm confused as well !! I have the symptoms of itching and pain on my right side as well......i'm curious to see what the Dr says now
Not sure if I responded to you. Glad you are taking Urso. Make sure dose is right. 13-15mgs/kg of body weight. I totally agree that you should have repeated labs every 3-6 months. Good for you for questioning your care!!!
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Scared & Confused
Recent labs.... with a surprise! (not a good one) ☹️ 
Cataract, Liver/Pancreas issues, Elevated M2 AMA, NAFLD and now Dupuytren's, I am only 45! 
Confused how pbc diagnosis works?
