PBC OR NOT

I have been having bad joint pain, and fatigue for almost 5 years now. I also have had 2 children in the last 5 years, so everyone (including myself) attributed it to that. At least I did at first.

I started to feel something was really wrong about a year after. It was hard to get out of bed, walk, bend, grab etc. I was and still am so unusually tired. I went from Dr. To Dr. Trying to find something. PCP, Cardiologist,Neurologist,OB, Gastro,Nepherologist, etc. I kid you not I have seen about 30 different doctors of every specialty.

I have also had pain in my liver area, which has landed me in the ER about 5 times a year. The conclusion always the same "phantom gallbladder pain" (I had mine out in 2009 Dr. Said it was the worst he's ever seen almost calcified)

My LFT's have been slowly trending upwards for the last 5 years as well, and my symptoms have gotten worse. Fatigue, joint pain, dry everything, itching beyond control, and I also now have cholesterol spots all over my body on my skin.

My Gastroenterologist kept saying it was Fatty Liver Disease. He did a sonogram, then eventually an internal sonogram still the same results. Then about 8 months ago he tested my AMA because he said my LFT's were entirely too high to be just fatty liver, more than twice what they should be...it came back positive. He immediately put me on Urso and sent me to a Hepatologist. The Hepatologist wanted his own bloodwork because he said I was entirely too young to have PBC (I am 34). It also came back positive so he scheduled a liver biopsy which I had done a week ago today. He calls me today and leaves a message saying my biopsy came back and I do not have PBC???? Just some fatty liver... How is that possible? What about my LFT's and my AMA? I have all the symptoms, and have had for a long time. Also I notice a difference in pain from my liver when I take my Urso...if I ever forget to take it the pain gets worse. Once I take it, in about an hour it subsides?

Should I get a second opinion? Retake the biopsy? I read you do not even need a biopsy to be diagnosed??? If your LFT's are high, and your AMA is positive then you have PBC??? Could somebody please shed some light. Also my Dr. will call me tomorrow what questions should I ask him?

Thank You,

Chavone

19 Replies

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  • I think I would ask for a second opinion. Also ask the questions you have asked on here. It seems rare to find a specialist prepared for PBC.

    Best wishes

  • I would give the PBC foundation a call, they may be able to advise you on suitable questions to ask, you can link to them from this page.

  • Phone the PBC Foundation - they host this PBC site on 'Health Unlocked' and there is link to their site at the top of this page. There you will find both email and phone links - I would give them a ring straight away - and you can talk to their trained advisors.

    If you test positive for AMAs, and your liver function tests are abnormal in a way which is typical for PBC (it might depend exactly which liver enzymes are out of the usual range) then that is usually enough for a diagnosis of PBC.

    It might help if you ask for a printout of all your lft results over the past few years - it is your right to have a copy, and your GP's receptionist should be able to just hand them over. However, there might be a small fee for copying, and more if they have to spend time searching back over years of tests.

    I don't know why the biopsy would be clear. It may be that the PBC is as yet very mild, and the biopsy missed duct damage - I'm hypothesising and don't actually know if that is possible. Or maybe the liver enzymes that you have out of synch are not the ones associated with PBC. That's why you need your exact test results, and to then talk it over with the PBC F people, who will be able to advise according to which liver enzymes and their levels.

    Have you been checked for all other possible liver conditions? Also, have you been checked for all other possible autoimmmune conditions that have tiredness as a major symptom? I was checked for everything: lupus, Hashimoto's, Rheumatoid Arthritis and more. Also, ask exactly what subtype of AMA you have, as there are different types, and some are associated with other conditions.

    But do talk to the PBC Foundation people, now, and join to get their guides. The British Liver Trust also has a good DVD, I think.

    I hope you get sorted soon.

    Take care,

    Gritty

    PS that's nonsense about being too young to have PBC, there are people on here in their teens and 20s.

  • Hello Cstar1079.

    The one thing that stood out when I was reading your posting was that you can have same symptons as in PBC with other liver disorders. Obviously I am not a doctor but as far as I understand although a biopsy for someone diagnosed already with PBC the sample from what I have read over from various liver sites and in newsletters connected with a liver charity can be a bit inconclusive as to the overall picture of the whole liver due to where the sample is taken from.

    Now apparently a biopsy is said to be a rather accurate diagnosis for PBC if a doctor is in any doubt due to the cells within the samples.

    Unless your biopsy wasn't screened correctly or maybe there was some mix-up then that could be a possibility.

    Yes you can be diagnosed with PBC without the need for a biopsy, I was diagnosed back in Dec 2010 without one. I started itching early 2010 and at the time didn't think much of having fatigue. These were the only visible symptons for me but when I had blood taken it was found my LFTs were not normal and after determining as to whether it was a bone-related issue or liver-related (as you can have abnormal LFTs with a bone disorder) via a blood calculation (I don't know the facts on this, was informed at the time by the GP) I went for a scan on my abdomen as it was said to be a liver problem. Scan showed nothing untoward and looked quite normal as was bile ducts the consultant said when I finally saw him later that year.

    On my first hospital appointment the consultant said he was going to take blood to check for antibodies, one was for the AMAs. It was found to be positive and along with the 2 symptons at the time plus the blood I was diagnosed with PBC and started on urso.

    Urso is a component of our bile and it is supposed to improve bile flow and aid digestion with having what is considered a 'compromised biliary system'.

    The only suggestion I can make is for you to discuss why a doctor states you have AMAs and you do not have PBC. I cannot say regarding the AMAs as I really do not know as it seems that even in PBC we can have a negative reading of them and even after having a positive in time can have a negative reading at a later date. I presume t here must be some sort of scale for gauging what is accepted for PBC diagnosis and what isn't regarding the AMAs possibly. Maybe your doctor could converse with a specialist whose field is antibodies?

    Fatty liver as I understand is can be known as NAFLD that is Non-Alcoholic Fatty Liver Disease that apparently can be eased with diet. I don't know much about this except it is a seperate long-term condition. (There is leaflets on various liver disorders to be found on the British Liver Trust website.) We can also have a fatty liver in PBC and can develop additional symptons due to one.

    Hope you get your answers but if possible can you ask to see a different consultant.

  • I would take the biopsy as very positive, at least there isn't any scaring reported. obviously they have found fatty liver, which can also pop the enzymes.

  • Hi Cstar, do you by any chance have Raynaud's, where your fingers and sometimes toes get painfully cold and change colors? I ask because the first symptoms you list are common in scleroderma, another autoimmune disease many doctors will miss. Raynaud's is usually part of scleroderma, however. Otherwise, the elevated LFT's and positive AMA plus your clinical symptoms are certainly suggestive of PBC, which you already know. The negative biopsy does confuse the picture, however. The only other thing I can think of that can sometimes cause various autoantibodies to show up in blood work and cause a wide range of systemic autoimmune symptoms in a predisposed individual is an immune response triggered by an implant of some sort in the body. People with spinal fusions, hip replacement, etc. often have titanium or other metals placed in the body and some have widespread immune reactions. Additionally, breast implants can trigger a widespread immune response in some women, and many of them report disease manifestations that closely mimic established autoimmune disease profiles but are often atypical in presentation. Do you know what your AMA titer is? Is your ANA also positive? Be sure to always get copies of test results and keep your own file. Best of luck in getting the answers and help you need, and I hope you will keep us posted on how you're doing.

  • Hi dianekjs. No I do not have extremely cold hands or feet nor do they change color. However I do have a lot of pain in my hands, and feet. I do not know what my titer(?) is for my AMA, and I also do not know about my ANA. I will get copies though. This is honestly very new to me. My gastro doctor, the one who originally tested my AMA never really gave me any info. Just that it came back positive and he was referring me to a hepatologist. When I asked why he was very vague. I just assumed that it was because the hepatologist would be more equipped to find out what was wrong with me. I was actually relieved to finally know something. When I walked into the office I was shocked to see a BIG sign heading the department that read "KIDNEY AND LIVER TRANSPLANT WING" It truly scared me to death. First I thought I was in the wrong place.

    You mentioned scleroderma...what is that exactly? Also I do not have any implants of any kind. 😊 thank you again for your help

  • The antibody titer is a measurement that shows the strength or concentration present. Scleroderma is a connective tissue disease that affects joints, skin, and systemic forms also have internal organ involvement. However, if you haven't experienced the cold fingers or color change, it would be somewhat rare to have scleroderma. Sjogren's Syndrome can cause dryness and a lot of other symptoms as well. It would be helpful to know your AMA level. Sorry to hear you're experiencing discomfort from the biopsy. Do let your doctor know this if you haven't already. x

  • *As for what to ask your doctor, I would ask him if you can continue to take the Urso since it helps your symptoms and recheck your LFT's in 3 months to see if they've responded favorably to the drug. Ask if your ANA was positive, even a weak positive, and ask him to send you copies of all test results to date for your files. You should always have those, and will need them if you decide to seek a second opinion, which may be wise. However, if your current doctor is willing to let you stay on the Urso and continue to monitor you regularly, his management of your care may be reasonable for now. The negative biopsy would seem to make it difficult for him to give a definitive PBC diagnosis at this point. I agree that calling the Foundation makes sense.

  • I think I answered you on my old post but I'll put this out there anyway. I would ask him if there was a possibility you had early stage PBC. My bx was negative for PBC also, but I got the bx report a few months ago and it says that it can't rule out early stage PBC. Though the Drs acted like if my enzymes were to go up they may start me on Urso, which they have gone up some since about May. I would also have your thyroid checked cause some of the symptoms you list sound like thyroid too. I would try to stay on the URSO if possible, and see if it doesn't lower your enzymes. Good luck and please let us know how that goes!

  • Thank you everyone for your answers, and comments. I truly appreciate all of them. I have been keeping a binder with all of my tests in it, and questions for the doctor. I will definitely be getting my latest test results, contacting the PBC Foundation, and asking my doctor those follow up questions. Thank you again, and I will keep everyone updated.

  • In the beginning of pbc liver biopsy can be normal .. Primary biliary cholonigitis means biliary duct problem which will effect liver eventually .. When I did my liver biopsy mine came out normal too. my Ama , Ana , and other tests were abnormal so they decided pbc .. I'm a male , 38 years old .. I would recommend you to have another dr. opinion and don't panic ..

  • hi there,

    i have PBC and they gave me a liver biopsy but not for the PBC (which does not cause the swelling to the liver, but affects the bile ducts). the biopsy was to check for Autoimmune Hepatitus. the biopsy did come back with swelling in my liver but they think that because the urso is managing my symptoms just now it is just related to the PBC.

    in short the impression that i am under is that the biopsy would not show PBC.

    hope this makes sense

    ps i hope i never need another biopsy--hated the whole experience!!

    good luck with everything

  • I agree the biopsy... The first part was fine but after the pain in my shoulder and chest was unimaginable. It's been 10 days and I still can not lay on my right side. Also my shoulder still bothers me if I need to take a deep breath. They said its referred pain, very weird that your shoulder hurts. My liver only hurt when I coughed or laughed. Still does

  • Not a nice experience at all. I was so scared to do anything at first in case I damaged it. Now I only have a tiny dot on my side to remember it. I hope you feel better soon x

  • The biopsy would also show PBC, unless possibly in very early stages. It is frequently used to confirm the diagnosis. The biopsy would check for any/ all disease processes.

  • Hello cstar...first of all i was 36 when i was diagnosed so im not sure where they get that from

    I had glandular fever whilst pregnant and they reckon it knocked the pbc nuch further on.this was also my 4th child and been pretty active up until this point so it was a huge shock.however i had had lfts done when i was younger and that was normal but made too much acid

    Biopsy can vary depending where they are taken from also ypu can have antinodies and symptoms but not much damage at that point...but you can still feel ill and exhausted.i think i would ask for a 2nd opinion as yoi probably need to know what you are dealing with.the good news is is that if you are getting urso this is what you would have anyway.good luck cazer.

  • Thank you so much! That's what I thought too, and have read in a lot of places. I will definitely get a second opinion. Good luck :)

  • Have you had any luck getting more info or results.i was diagnosed at queen elizabeths birmingham but at time my consultant in sometset was insistant l neede answers.hence a biopsy.was yours done with ultrasound....the radiologist looked for the bits that looked scarred on iltrasound and took 3...im assuming if yheres only small patches of damage they could be missed.what i dont understand is how the consultant can ignor the raised amas i thought these were indivdual to pbc.i was also told that any autoimmune disorder can give you fatigue general feeling of being unwell.. so you could have these symptoms without serious liver damage...which i know is not very good.ive had fatigue for very long time but you do learn to live with it.good luck cazer.

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