Diagnosed today. Scared

Hi everyone i was diagnosed today with pbc. I had a blood test done called mitochondrial (m2) antibody. It showed me at level 76.4. I recently had my gallbladder removed march 10th 2016 as well as a liver biopsy. I had went to a previous surgeon and he wouldn't do surgery because he said i had cirrhosis. The new surgeon ( the one who did my gallbladder removal and biopsy) said it showed i had a fatty liver not too bad and asked me if a drank. I told him no and he said as long as u dont drink youll be ok. I said what's that suppose to mean? He said ur young, healthy you'll be ok. Now four months later i am diagnosed. It doesn't make sense to me. I received the news today and I'm not sure how i feel about everything. I guess its just the not knowing what stage i am. Would i know by symptoms? I have upper right quadrant pain that radiates down to like my hip bone area and lower back pain of course i have extreme fatigue no energy and anxiety with it all. I feel at times my whole body is aching is any one feeling the same things? I noticed many people talk about urso or some form of medication. Does this disease progress fast? Please tell me some of your stories. Im just afraid im going to die.

26 Replies

  • I'm sure you will have many answer you today, firstly don't panic! I read a lot about Pbc in the wrong places but then came on here registered with the Pbc foundation they give loads of help and information and will put you at ease, they know everything there is to know about Pbc. They have it and know how we feel.

    I was always asked how much I drink etc, I used to love a pimms but was never a regular drinker apart from coffee.

    I've been diagnosed this year but had the blood test m2 positive first, it took time and lots of appointments but I'm on urso and this slows the progress of Pbc.

    I have fatty liver disease, and had my biopsy last month.

    Most of us have fatigue, aches and pains and the dreaded itching, at some point. mine was the beginning of finding out what was wrong with me the m2 blood test was found positive but luckily it was a test done by the lab which wasn't ordered.

    You will find lots of support on here, please don't panic.

    Wishing you all the best, Carol.

  • Thanks I just got a report saying my AMA was 74 and the gastro

    doctor says this usually means pbc. nothing else was high just that one. I started looking on the internet and found you

  • Ya i went yesterday and saw my g.i specialist. Hes sending me to a rheumatologist.

  • Hi

    I was diagnosed with PBC about 18 months ago (I don't feel any worse than at diagnosis if this is an indication of slow progression). My heart went out to you when I read your post. I just needed to say, try to relax, the anxiety and fear of being given a label of PBC was a real difficulty for me, I struggled to find information, everything seemed so vague and ambiguous. My big question was "am going to die from this", I eventually got my head around the answer "Yes if something else doesn't kill me first". We are all going to die of something and the only difference from before the diagnosis is that I know I have to look after myself better and I know why I have been feeling ill for so long. It took me about a year to sort of come to terms with my diagnosis.

    I have seen that people live for many years with PBC. I still struggle if I think of myself as "an ill person", hospital appointments stress me and whenever I think of what I can't do anymore, so I focus on what I can do. On a good day I feel grateful that I live in an age where PBC can be diagnosed and treated and on a bad day I wish I had never heard of PBC. There is no doubt that this has changed my life and I am sure the lives of so many. Some of those changes have been sad, letting go of who I thought I was, but I am learning to relax more, to slow down, not to worry and accept that things are different now. For me the big challenge has been to let go of how I think things should be and to accept how they are. I have found great comfort from information on this site. Help is out there.

  • May i ask what you eat? Are there certain foods i should avoid? Do u ever get dizzy? Thank you for replying by the way. Im so devastated. This is all i can think about. My friends really dont get what i have and there like well itll be ok. And the way i feel so weak scares me because i dont feel like itll be ok. I feel the tiredess ive ever been. Ive actually felt like this off and on for quite some time now. And never got answers they would just say it was anxiety or stress. So is this a disease that slowly progresses right it wont like kill me out of no where? How do i know when its really bad? Sorry for so many questions. What was you m2 levels and does that have anything to do with what stage your at?

  • I hear you. No one really understands the disease and wonder how can I be sick of anything if I look OK on the outside? They don't get it. If I'm tired, they think I did not get enough sleep. If I itch, they tell me it's dry skin. If I have a pain on my side, it's gas.

    So - I come here. They let me go for 3 years without diagnosing anything. It was not until I demanded to know why my liver numbers were so bad that they sent me to a specialist. More tests, scans and blood work 9 months later and a biopsy diagnosed me with PBC Stage 2. I could not stop crying.

    It's been 10 months now and I am a little calmer. I still worry and think about it but I just go on with my life hoping the URSO I take keeps my numbers low and the disease does not progress. I also have hashimoto's thyroiditis - another autoimmune disease which kills my metabolism, causes depression and a bunch of other crap. There are days where I isolate myself because I just need the time alone. Luckily hubby is a loner himself so it works out. He just leaves me alone.

    The good part of living in AZ is that it is almost always sunny and my house has two large doors that let the light in, which often help lift my spirits - they say sun can do that.

    I would say, you have to learn to put yourself first. All to often women are caregivers but this is a time when ME has to rule and what is best for me has to take precedence.

    I don't talk about it much unless I am on the site. Here people try to share what is happening with themselves and it seems to help knowing I am not alone.

    The concept of PBC is frightening when I think of what is happening inside my body or that my immune system is attacking itself.

    But - never let it stop you from living and enjoying the days you have that are good days - there are a lot of good days. If the meds work, people have lived for years with this disease and I always try to see myself as one of those.

    My son is getting married this November and I will be dancing at his wedding and waiting in a few years for more grandchildren. I plan to be here to watch them grow up and I will not let any grass grow under my feet.

    Here's hoping someday they find a cure. Until then - live your life and make it a good one. You will be OK.

  • I cried reading your reply. I think me not knowing my stage frightens me. I had a biopsy on March 10,2016 while they removed my gallbladder and they said all was fine so im completely shocked to test positive for pbc and my ast alt liver levels are normal so im honestly just shocked. And yes no body knows

  • I am wondering if they are right. I had bad liver numbers and high AMA's. If you had a liver biopsy in March and they did not find cirrhosis I have read here that it could be something else - or you might be in the very early stages which would be great news.

    Did they prescribe urso?

  • No i see a g.i specialist on wednesday. And when they Did s biopsy they we're looking for cirrhosis. The surgeon asked if i drank i said no hee did you'll be fine. I got the pathology report yesterday And I'm not even sure how to read it so i have to wait till i see my g.i dr. But my ama levels are76.4 .. The symptoms i have are right upper side pain. Itchy off And on.. Lower back pain. Extremely fatigue And weak. Oh and achy body. I kind of feel like im in a surreal state of mind like in a dream. Do u ever feel bloated? Or have issues with your bowels? Like sometimes i go like nothing then i can't. What foods do u stay away from?

  • Well eating is interesting. I eat Ok not great - never been skinny and now with hypothyroidism forget about losing weight so I try to eat the best I can.

    The bowels issues are interesting - same as yours - like some days nothing and others yikes - but I have not been able to nail it down to any particular food items although too much dairy bloats me especially in the evening.

    Numbers I have looked at Alkaline phosphates, AST and ALT levels. Then there is the GGT levels. My GGt levels were at 477 (Normal is 0-60_ but all other numbers above were also high.

    Within 3 months of URSO my numbers dropped to within normal. I just got my blood tests online about 20 ,minutes ago and they are still OK. I see the hepatologist next week.

    But I am in the states so they might look at things differently here and I am not sure where you are at or how they interpret data there.

    I get tested every 3 months and see the doctor twice a year. I am hopeful the URSO will continue to do its job although they have just approved a new drug for the folks who either cannot handle URSO or where URSO has had no real impact.

    Please let me know how you are doing. J

  • Oh thank you. Im not sure what ggt levels are. One thing i do notice is my platelet count had been high for quite some time now 498. What about yours?

  • No mine platelets are fine. But your doctor should be dealing with that as well since none of the stuff occurs in isolation. I question everything now. Here you have to be your own advocate. Doctors - good ones are scarce. I was ready to move back to NY after being diagnosed where they have better physicians. I have a sister-in-law there but I thought I would see what happens here and luckily I found a good liver center at home.

  • Hi, nessarose714. Welcome to the "club" that none of us wanted to join!

    Yes. We have a disease and it affects our life. Most people have never heard of it and trying to explain it to family members can be interesting. For me, the possibility of PBC was raised in the results of some blood tests run after my alkaline phosphatase was higher than normal. I was lucky. I had a family doc who knew what tests to order. The ultrasound results were identified as fatty liver disease, but he ordered some lab tests to check for autoimmune disorders as well.

    My mitochondrial antibodies were way up there past the normal range and the report had a little asterisk with a comment that this was found in 90 something percent of people with primary biliary cirrhosis (now called cholangitis). My first response when I read it was "What's that???" I made some dietary changes, tried to slow down my crazy schedule, and went on with life.

    Six months later, the AP was higher than ever so my gastro doc got involved and insisted on a liver biopsy. So, May 2014, I learned I have stage 1 PBC. Like you, I was filled with questions, wondering about the future, and what was going to happen.

    The first few weeks were difficult after my diagnosis. Fatigue, stomach upset, itching, anxiety, adjusting to new medications, constant questions, and stress about the future since I am self-employed were all my unwanted companions. I increased fresh foods in my diet, reduced my chemical exposure by changing to natural products (i.e. goat's milk soap), learned how to rest more, and took control of the details I could. Slowly, I felt better even though my liver numbers on the lab work kept climbing. I later learned it takes several months for the urso effects to show up on the blood work.

    I gradually improved and my symptoms diminished. Most days are good days now. I don't have as many issues with stomach trouble, itchiness, etc. and only occasionally have right side pain. I rest when I can and still teach students with special needs full-time. The news about the PBC made me stop, think about what I really wanted, and change some things. I can't do as much as I want to do, but I can do most of it if I pace myself. The people here on this site are wonderful and quite willing to share what they have been through and what has worked for them. The anxiety about whether PBC will shorten your life is very normal and we have all been through it. Blessings and peace to you.

  • Hi may i ask what level your m2 test was? And what the level even means? I am a lil devastated it feels like a dream and the past few days i find myself super super achy and absolute no energy. I use to have itchiness i want to say like last year i would have crazy crazy itchiness everywhere and i thought it was really dry skin. Do you know like what symptoms you get if its really bad? I think its the whole thing of not knowing what stage im at you know like i feel like am i going to die at any moment kinda thinking. . i have an appt scheduled with a g.i specialist on wednesday. So i dont know what happens from there. My primary dr didnt say much about this disease as they say talk to the g.i dr. The medicine you take is there side effects? Does it make you feel ucky? Im so sensitive to meds that i cant even take vitamins without feeling ill. Im kinda scared knowing that my life depends on a medication so crazy to think that. I think im still in somewhat of a shock if that makes sense where i want to cry but cant. Im not sure exactly what to feel. Im so blessed to have support from everyone on here it makes me feel better.

  • My M2 antibody was 109 (range 0.0 - 20 is normal) and my GGT was 202 (range of 0-60 is normal). In addition, the antibodies indicating Sjogren's syndrome were greater than 8 (0.0-0.9 is normal) for type A and 1.4 (0.0-0.9 range) for type B so I was also dealing with that autoimmune disorder.

    My body was sort of in a tailspin for the first few weeks, but the PBC was only a part of it. My family doc started me on high blood pressure meds the week before the biopsy so I was adjusting to those as well. In addition, when the diagnosis was confirmed, my gastro doc pulled me off the hormone replacements I had used for 10+ years following surgical menopause. I was started on the ursodiol taking three 300 mg capsules twice a day. For me, it was hard to tell what was side effects from the bp meds or was it from coming off the steroids, or was it the urso??? Plus, I started having hot flashes and the irritability that had been under control for so many years with the hrt meds. Life was NOT FUN! I just got through each day. I went on vacation planning to celebrate my 25th wedding anniversary and was too fatigued to leave the campsite. I would get dizzy every time I stood up, and honestly just sat by the lake most of every day for a week. I was really wondering if I would be able to teach students again when school rolled around in August. It was a very scary time for me because there were so many unknowns.

    For months before the diagnosis, my lower legs itched so badly and I tried every dry skin lotion available. They were raw in places from the scratching and kept me up at night with the itching. The diagnosis gave me a reason for the itching, but the label didn't help the symptoms! In addition to the urso, I think increasing my water intake, eating more fresh fruits and vegetables, and using only natural skin care products did more to slow down the itch because all that helped my body settle down. I was troubled with nausea that would hit with no warning and I learned to keep ginger ale in the fridge.

    Hopefully, your g.i. doc will provide you with some info and answer your questions. Some docs are more knowledgeable than others. I suggest you write out the questions bothering you so you can remember them when you see the doc. In addition, since you have already had a biopsy, the doc will likely tell you what stage you are in.

    Yes, it is scary to realize there is only one med that slows down this disease, but I am thankful there is one. The medication provides extra bile acid so it takes some of the load off the liver while helping you digest foods. I have learned to take all my urso after I have eaten my meal because I feel better doing it that way. I didn't have many side effects beyond my digestive system having a mind of its own and being unpredictable. It gradually settled down...I also had trouble with it prior to the diagnosis, and there is a definite history in my family of digestive issues so I can't blame it all on the urso or the PBC!

    My biopsy showed inflammation, granulomas and the very beginning of mild fibrosis. Basically, as I understand it, the bile acid created by the liver leaks into the liver tissue where it is not supposed to be. The granulomas form where it has leaked and the immune system reacts, surrounding the damage to contain it. As the tissue heals, it scars, creating the fibrosis that stops the liver tissue from functioning as it should.

    I went through some very stressful time in December and had more trouble with symptoms in January and February. It took awhile to get back to where I was before the stressful time, but I finally made it and the lab work confirmed my progress. I know you are scared, anxious, and worried what will happen to you. Your description of being in shock is very accurate. In some respects, adjusting to this diagnosis involves grieving the loss of health as you knew it. So the physical symptoms of feeling achy and no energy may be part of the shift now but that doesn't mean they are permanent symptoms. Relax as much as you can. Knowledge is helpful and you will get more on Wednesday. I encourage you to take life one day at a time right now and do what you can to be nice to yourself in whatever form that takes. For me, that involves resting, reading a fantasy novel, and spending time with my sister. Blessings and peace as you rest tonight.

  • Hi NessaRose (wicked the musical ref??)

    Wanted to say know how you feel. I had the AMA test about 2 months ago along with lfts AMA said positive and lft were mildly abnormal but nothing of concern. Dr said I had this disease since been to consultant who says doesn't think I do have it and if I do it's very early.

    What I wanted to say is when I first heard the PBC diagnosis I wanted to curl up and pretend it wasn't true, it wasn't me. Cried constantly saw my life gone in years and got myself into a state. But by the time I went to the consultant this week I had come to terms with it. Time does make it feel better. I still worry now. I probably always will. It makes you look at your mortality and life and changes your way of thinking. But it doesn't have to be all negative. I've lost weight, started eating healthier and valuing every moment I have.

    I really hope you find some solace. Thinking of you. It is hard but positive thinking when you can does wonders xx

    Here if you want to talk

  • Thank you for replying. So my ast alt liver levels are normal. But i tested positive for pbc from my m2 antibody test. What symptoms do you get? Im super tired. And weak. My body aches. And im dizzy. Yea i kinda keep thinking about this and im like am i going to die. Its like everything around me slowed down. Whats lft and ama? Im not sure i got those tests. I feel overwelmed with worry. I just feel like mynlife is doomed. Is this going to kill me? How does one get this?

  • I've always been terrified of dying and never thought about it cos it upsets me so much and this makes you confront it. I still can't think about it without getting upset so now block it from my mind. It's the only way I can cope.

    AMA is the anti body test and lft liver function tests. What results did you get? Are you in the uk?

  • Im in california. Oh my ama was at level 76.4 and lft i don't know. I know my alt and ast liver levels are normal. Yes death scares me. what do the levels mean in results

  • From what I understand it's all about ranges so above a certain level it's abnormal. If yours are normal it's s v positive sign! Where in CA?

  • Please call the PBC foundation, there is a link at the top of this page, they will guide you through all your questions and will put you mind at rest. They support this page and I think everyone on here has probably spoken to them at some point so please call them today before the weekend you will feel so much better speaking to them.

    I was diagnosed 7 years ago I felt the same I just didn't know where to turn my consultant said, ' you are living with PBC not dying from it' and those words have stayed With me. There are others on here that have had PBC a lot longer than I have and I feel today pretty much the same as when I was diagnosed. I've had to learn to pace myself due to the fatigue but i still do everything I want.

  • Thank u i Will call them. Ok so i see fatigue is one of the major symptoms. I feel awefully fatigued and yes i also pace myself. A simple shower loses my energy

  • Sorry just realised your in California you may want to email the PBC foundation, there based in the UK.

  • Have been diagnosed for 5 years now. Did originally have a liver biopsy which graded my to level 4 - so to all intense and purpose I do have cirrhosis which started as PBC. Initially I was in a dreadful state, had time off work when I came back to work was tearful. Have religiously stuck to the Urso. From day one I made sure that I knew what everything was that went into my body, as the years have gone on I have relaxed some but my body tells me if I have been naughty, I don't drink at all. My theory is that whatever you swallow your liver has to cope with it and as mine is badly scarred it takes a lot longer to process everything.

    Try and stay focused and positive there are loads of people on here that have had PBC for years. I work full time and have a demanding job, try to swim twice a week, but when I get tired then that is me finished for the day. You will find your limitations, I was one of the lucky ones and the itch went away, but I still put that down to toxins in your system from what you eat. Yes your life will change, you have to be careful but most of all try and enjoy yourself, I have a very understanding husband but there have been moments when the 'concern' just gets too much and an independent streak comes to the fore. I have no idea what any of the blood levels mean to this day, I don't ask when I see my consultant I am only interested in how I feel, the consultant I take notice of the GP just doesn't have a clue!

    Take care and you will learn to cope.

  • Hi. Sorry to hear your distress. I was initially diagnosed after complaining for many years with tendon and joint pain. Prior to that i was diagnosed with irritable bowel and Fibromyalgia. So yes pain seems to be part and parcel of pbc. In 1998 I was diagnosed with stage 1 pbc and thanks to ursofalk I have only progressed to stage 2. Pbc is very slow usually in progressing and i have been told i will probably die of some thing other than PBC. When I started on Ursofalk much of my pain abaited till the last for to five years. What i have noticed is stress is my enemy and that's when my pain levels go up.

    I hope your pbc is slow like mine as i have had a very good life despite much heart break.

  • Hi Nessarose,

    Just to support others recommendation to contact the PBC foundation through the link at the top of this page. They are free to join, have a good website with lots of information. Look for the Compendium on their site - a guide to the disease and a magazine called Bear Facts and some interesting videos.

    Also, don't get too hung up on the level of AMA M2 that you have. It's not as important as you think and apparently the level does not indicate which level of disease you might be at. In fact it is so unimportant that our local lab that does our blood tests here in the UK does not give a level, just whether it is positive or negative. And in addition it is not tested for every time you have bloods taken.

    PBC can be a very, very slow moving disease. It may take several months but if you possibly can, try to relax a little. Adding extra stress and tension in your life is maybe not a good thing. One thing that can add hugely to the stress, is googling PBC and getting all sorts of inaccurate and seriously out of date info come up. If you can resist the temptation, try not to google!

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