I am 41 and female. Not a heavy drinker but love a night cap (or 2, let's be honest) in the evening before bed. Also addicted to hot chips... I have Raynaud's and Fibromyalgia. Also I have peripheral nerve damage from Lyme's disease in 1999. From '99 through 2005 i was on every antibiotic there is it seems. After that i was placed on daily vicodin for the nerve pain and ambien for sleep. I weaned myself to tylenol for pain and melatonin for sleep in the last 5 years. I have been increasingly itchy at night over the last couple of years. Starting about 2 months ago, the Raynaud's changed from 'hot hands' to burning and severely itchy hands. I thought i would scratch off my skin. Then my scalp started itching off and on. Horribly enough that i swore i must have lice. I did not. Itching comes and goes. At this time i noticed that my bowel movements (sorry) had turned from brown into either clay colored or yellowish. It alternates. I have occasional pain (like dull ache) in my upper right abdominal. I googled all of this and all indicators pointed to liver issues. I don't really drink enough to warrant liver disease but to be careful i called my GP and asked her what my latest liver panel results had been (back about a month ago). She said nothing to worry about. She had only done an AST and it was only 41. The cutoff for high being 40 she hadn't been concerned. I asked her to run a full liver panel and an AMA. She complied. The results came back as slightly eleveated AST and ALT; 52 and 53 respectively. Also the AMA was positive at 49.1 (cutoff for positive at 20). She asked me to follow up with a referral to a gastroenterologist. I did within days. I confessed all of my sins (drinking, past pain meds, large doses antibiotics). He said the liver enzymes were just very slightly elevated and did not appear to be caused by drugs or alcohol. He said something about they were low and also not the proper 1:2 ratio and asked me if i had a family history of PBC. I said no, but that we did have a history of autoimmune diseases in general. My teenaged son has Type 1 Diabetes. My sister has MS. My mom has had cancer 3 times (lymph nodes, breasts, uterus). I myself have hypothyroidism. He sent me off for a full abdominal scan, a fibroscan and a new liver panel to be repeated in one month from the initial visit. My fibroscan is set for the 8th of March (it is currently February 11th). My bloodwork should be drawn around the same time so as to make sure my enzymes remain elevated with me not touching a drop of alcohol (he said tylenol was fine though). My abdominal scan was this morning. They just called me with the results. They say the scan showed mild fatty liver.
So my question is, given the collective knowledge of the PBC Foundation group (you guys have seen it all), do you think I have PBC? Or do you think the doctor is wrong and somehow i have caused this damage on my own from drugs and alcohol? Everything i read is so grey. What sticks out to me is that my AST/ALT levels are eleveated but not high and their ratio is not classically indicative of alcoholic liver disease; it is 1:1 instead of 1:2. Also my AMA is positive. Can alcoholic liver disease cause positive AMA? Luckily I am not actually an alcoholic and have no trouble abstaining for the month (or however long is needed) so we can get the clear picture. But i worry in the back of my mind whrther i have done this to myself (and my kiddos). Seems PBC is a gentler diagnosis since it at least can be treated right?
I know i am worrying ahead of time. Besides, it is what it is at the end of the day. But this will be the longest month of my life. I need someone to talk to! I can't worry my family with this news especially when i don't even have an official diagnosis yet!
Please let me have it with all of your wonderful thoughts and opinions!
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Vexing4u
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Since I am not a doctor, I do not want to give you a perspective as to what I think you could or could not have. Below is what is used by the doctors to diagnose pbc when they are investigating the possible causes of elevated LFT's. Presence of 2 of the 3 below criteria is enough to diagnose pbc. In US, to be definitive and to rule out other possible liver conditions, most hepatologists or GI's will schedule a biopsy for diagnosis and staging. Often times, the blood work is not definitive enough for diagnosis.
Don't jump the gun and worry until the doctors do all your tests. Do you feel your doctor is knowledgeable and accessible enough to guide you through this process? That helps a lot when you are going through stuff like this. If you have pbc or any complicated liver issue, really should be under the care of a hepatologist. Your GI will recommend one to you if needed.
Hope this helps. Haley
Diagnostic Criteria
Epidemiologic criteria for primary biliary cholangitis (PBC) diagnosis [15]
The epidemiologic criteria for the diagnosis of PBC are based on the presence of 3 factors:
Compatible serologic tests (antimitochondrial antibody [AMA]- or PBC-specific ANA) at a titer of >1:40
Compatible or diagnostic liver histology.
In epidemiologic studies, the presence of all key features has been suggested as indicating definite PBC. The presence of 2 out of 3 features has been suggested as indicating probable PBC. [15] Although the presence of high-titer AMA and cholestatic liver biochemistry is highly suggestive of the diagnosis of PBC (particularly in the context of a patient with the characteristic age and sex profile), the diagnosis of PBC cannot be made with complete certainty in the absence of liver biopsy confirmation. Biopsy confirmation of diagnosis should, however, be undertaken only where such confirmation is likely to materially change the treatment approach.
Thanks ngw, I was thinking the AMA positive plus the 1:1 ratio on the AST/ALT pointed to PCB but I know it’s a very grey area. I guess I need a Hepatologist instead of a GI?
To clarify hepatologists are also GI’s; though not all GI’s are hepatologists. Hepatologists are GI’s with additional training such as a liver transplant fellowship at a hospital program.
Hi, please read this. Only 8 pages. But it is the most current info. (See page 2 regarding biopsy) Also, Fibroscan OR the more accurate MRE is being done over biopsies in some cases. Talk to your doctor about it.
That was meant for Vexing4u. I'm like you too. First thing my doctor did was a biopsy. It came back mild fatty liver only. No PBC when I indeed had PBC. Positive AMA and elavated Alk phos. 2 out of the 3 criteria.
Infact, 2 years later my MRE came back 3.14Kpa. which is early stage 2. I'm a non-responder to URSO. Infact, just got my latest labs back. Only thing elevated is Alk-phos at 159. I start Ocaliva tonight. First dose will be taken at 10:00 P.M.
Hang in there Vexing4u! It'll all get figured out. Read that info.
Thank you. Lol, took my first pill last night. My husband kept checking on me as if i was supposed to turn purple or something. Hoping and praying i dont get the dreaded itch from h€\\!
it is possible to have both... but docs seem unkeen to do double diagnosis...!!! as I was told...
it makes it more likely as you already have an autoimmune disease... please don't be kicking yourself... perhaps best however to stay away from alcohol for now...
i think if it was me i would be asking to see if you can go to a liver specialist... who will hopefully have a better understanding of the different types of liver disease.
if you have the antibodies then it is most likely.... in my unmedical opinion...
these are all symptoms of pbc... but you need to see a specialist.
sure you could enjoy the odd bag of chips but will probably upset your bowels more... just probably best not too often... ha ha...
cazer - it was you too who put chips in my thoughts! I had some today, rare event but it helps me occasionally, seems to put my bowels back to comfortable! x
Hi Vexing4u the girls have given you good links to research so I want to come to your post from a different direction. PBC is not alcohol related but once the liver is compromised it is best not to stress it further. Food wise a lot of people report, me included, that a diet rich in fresh vegetables and fruit, no salt, or fizzy drinks, cut out sugary produce and a reduction in fatty foods such as red meat (if you eat it) seems to help overall. Personally I have the occasional glass of wine however there are many who do not have any alcohol. Increasing the amount of water you drink may also help. This will put your body into a good place for the blood test results.
There are many different liver diseases, the Cleveland Clinic reports that there are over 100 - it is mind bogling so the best person to be looking into your welfare is a hepatologist.
I do not believe you have caused this for yourself if it is PBC - PBC is an auto immune disease which needs an environmental trigger.
do come back to us and let us know how you get on.
Great Post! I didn’t know about >100 liver conditions. The body is a wonderfully complex miracle. I think I would have become a doctor if I had all this interest in medicine. Would have made it enticing to study for it & do well. But I had no interest until now.
But probably I would have mostly liked ophthalmology, not gastroenterology or hepatology.
I agree with you, best not to get involved in an area where you could be up to your elbows, but eyes!, not for me! I'd go for fixing hands. Sometimes I wonder of the specialist sitting in front of me, 'what made you choose this?' and mostly I'm just glad that they did.
Funny thing, when I got my PBC/AIH diagnosis I was working as a special procedures nurse in the GI/HEPATOLOGY UNIT AT A VETERANS HOSPITAL where we treated a 90% male patient population. So I had never heard of PBC since it really DOES affect women more than men. Luckily, Some of the docs I worked with were doing their GI fellowship with us from Kansas University (one of the leading hospitals in liver transplantation.). Because I worked so closely with them my itching and fatigue was noticed. Rest is History!
I didn’t set out to be up to my elbows in you-know-whats!!!! All kidding aside, it is a very interesting specialty and I loved taking care of our veterans. Before my PBC forced me to go on disability, I was lead nurse in special procedures. Sorry, but I could go on and on about GI!
Hi KimRenee, then you'll understand that the kindness and dedication of nurses and doctors that met during an 8 week stay on a lower GI ward was a turning point for the better in my life. So many patients having every exudate weighed measured and tested! The nurses barely got time for a break in a 12 hour shift. It was painful to lie there being waited on and know that these people are working their bodies so hard that there will likely be a price to pay for them, if not now, then later. They were so impressive. Thank you for being one of these.
Don’t think you have to drink alcohol to have cirrhosis of the liver. I am one stage of fibrosis of the liver to having non-alcoholic cirrhosis. I do not drink and never have. Six months ago my numbers were elevated but three months later they were down so my gastroenterologist did not start me on Urso.
Hello and welcome to the forum. As others have said, there are many reasons for our liver enzymes to go up. Your AMA being positive could be a reflection of the auto-immune disease you already have. I had a friend with Raynaud's and she had issues with liver enzymes too. One thing that caught my attention was the fatty liver and itching. When our liver gets overwhelmed and "toxic", our bodies find other ways to rid the gunk out of our systems. The skin is the organ that commonly is affected, hence this could be what the itches coming from. Yes, it's a great idea to eat clean, give up alcohol and also the Tylenol if possible for awhile to see what is going on. I'm really sorry you are having to worry about yet another issue. Hope you find the answers you are looking for when you get all your information back from your doctors. Be well
Our bodies are complex beyond the understanding of the cleverest who study them.
Perhaps they are so to prevent us meddling with them and accidentally destroying ourselves, a design for survival. Nothing that you have done is directly, if at all, the cause of your situation - you haven't "done it" to yourself and it's evident from your post that you are a caring, careful mum so you certainly haven't done it to them either.
I live in plain sight of my PBC, respecting my body to the best of my ability with the help and knowledge that I have. And yet, after reading your post, and after a walk along the shore with my dog, we shared a bowl of hot chips! Not ideal. Not lethal. Not my fault (not yours either, even if you put them in my mind!)
Just wait til you know, and then do what you need to. No place for worry, it's worse than chips and wine. You will be ok.
Honestly I wouldn’t drink , drugs and alcohol are to hard on the liver, Both Of those make the liver progress , you don’t want that , Dr’s say a can of beer is like a 6 pk to someone with any kind of liver disease, especially if your having a drink every night NOT A GOOD IDEA
Thank you for all your great feedback! I should have mentioned; I am vegan. I actually do get plenty of fresh fruits and veggies : )
Just that my junk food of choice is hot chips! LOL. I love them so much! Especially dipped in hummus! So, AMA can be positive because of my Hypothyroid? These are AMA M2, I thought those were only related to the liver? I am confused now...
Labs to identify thyroid issues do not include AMA tests. Hepalogist ran those for me. Labs for thyroid test for thyroid antibodies A&B specific to thyroid. Endocrinologist ran those on me.
I got confused because the post above from mrspeffer stated that AMA positive could be a reflection of my thyroid condition. And i thought the thyroid antibodies were differents than the liver ones. AMA M2 is liver only right?
I'm a 45 year vegetarian and like to have a drink now and then but do realize that it's best to have only the occasional drink (I've been told by my two GI specialists that it's OK but do listen to your own physicians). Life is to be lived (as long as possible). LOL I cannot do without french fries. Sorry, but I have my limits. We have fries that are cut up, washed, lightly coated in olive oil and baked. Yum! So, when I have a fries craving, I just have the baked ones at home which are healthy.
So my Fibroscan is ordered by my GI. After i have it and my new labs i meet back with Gi again to go over results. At that time should I ask for a referral to a hepatologist? Or should i only do that if fibroscan results indicate damage?
If you have a liver condition, best to follow up with a hepatologist. My GI sent me to the hepatologist when he noted the elevated liver enzymes. GI actually wanted to send me to do a biopsy right away. I was scared & refused so he sent me to the hepatologist who agreed that I also needed a biopsy. No offense to GI’s but my GI don’t know much about liver issues; he is purely GI stuff.
It took me ~2 months to get a definitive diagnosis. Nerve wrecking. Just know it is normal to be on this emotional roller coaster. Vent to us if it makes you feel better. We know what you are going through.
My Hep dr was mostly Gi, I switched to a HEP, with a side of GI. Much better care. Not to say Gi doesn't know, just that HEp knows more. I'm 8 yrs in, I was choosen to do a drug trial, because I'm a non responder to urso. My trial will be over soon, not sure what will happen then. I live everyday well, try not to get ahead of myself or my condition. Stress makes it worse.
Do try to make time for yourself, by total relaxation. I found the more I read up and tried to figure out on my own, the more stressed I got..
I still read up on it, but more to understand than figure out.
I'm in Vancouver and I see a GI specialist. I did ask my GP about it and she thought it didn't really matter; however, as you know, hepatologists do get extra liver training. My GI attends conferences, including on PBC and I have faith in her so for me personally, I also factor in rapport, interest in that area, opinion of my GP whose opinion I value, etc. She listens and hears which for me is important. If she thinks I should be seen by someone else or she wants a second opinion, I'm sure she would refer me.
When I asked her about the fibroscan and whether or not I should get one, she said that they usually on do it for their patients with hepatitis. She's part of a large clinic of 8 GI's. Anyway, she said fine and she had a fibroscan machine in her office. LOL
glad you have a great relationship with your GI. I have only met mine the one time. I guess i will wait until our next appointment to decide if i trust him or no.
My first one and I did not have a good rapport (though he was a professor and extremely knowledable) After numerous issues over years and plenty of begging, my GP finally agreed to try and get me another specialist. Turned out she trained for a time under my original one and no explanation was needed! LOL
He showed little interest in me and how I was functioning in my life with the illness so when it came time to complete information that would be used for a disability application, I got screwed and that was the final tipping point. He didn't know me other than my lab tests. Part of the reason the rapport and interest is needed is that they can help in various areas of our life and the power they hold is significant. Advocates are important.
It is worth going to all possible lengths to get a doctor who has rapport with you. It makes you flourish even in difficult times. It should'nt be as tricky as it often is to swap for someone who suits you better? A bad match feels worse than the disease and gives no help for it either. I'm pleased you are out of that Lucky4.
Thanks. I've had my new GI specialist for four years now and am happy. Because I had to be referred by my GP, I understand it put her in an awkward position and why it took so long. These things become political. It therefore becomes a situation of being patient for the process but keeping your eye on the prize. I sometimes see on here people looking for recommendations from others and that's a good idea. Occasionally, someone may click with someone else and vice versa but overall, when you have significant health problems, you do need to try and get the best help possible (if you can).
May you and others get good matches! I'd never move from Vancouver because I'm lucky to have a great GP and GI specialist (otherwise I'd be tempted to move but it's just not worth taking the risk).
I totally understand our reluctance to put our doctors in "awkward positions", (they do have power over us) but I question the ethics of a doctor who would find him/herself in an awkward place for allowing a patient freedom of choice. And we don't always feel as though we have the luxury of time, energy or brains when sick, to play the politics game? Not easy to be a patient, very hard to be a patient patient. Best wishes
Yes, well, it's been a journey. Back when I was first diagnosed (2007) and waiting to see the specialist (two month wait), I did some reading on the internet. Not good from this one study I read. But, it turned out I'd misinterpreted this study I read causing myself all kinds of unneeded stress. Now I wish during the waiting time, I'd just *tried* not to make any predictions about myself (not easy).
Hi, I have last week been told by my gp that I have PBC. I Started last year with horrendous upper abdo pains which I ended up in hospital with & had to have my gallbladder removed. Since this I’ve not been right with ongoing pain & I’ve been woken up many mornings with nausea. I’ve been back & forth to my gp who has done numerous blood tests which all show elevated liver enzymes. I have now had a positive result for AMA’s. I knew nothing about this test or disease until last week, had never heard of it & so I have been frantically researching this illness on the internet. I’m now awaiting an appointment with the liver team. Ii am worried sick. I am 41.
Try not to worry until you get seen by the liver team. Elevated liver enzymes along with positive AMA’s is highly indicative of pbc. Seems like your GP is smart enough to diagnose you.
Most doctors, including GI’s don’t even know what that is. The good thing is the GP found it & you will see specialists who will help you manage this condition. Sometimes it takes years to get a diagnosis & the fact you already have been diagnosed means you will be treated earlier.
Another positive is that pbc is slow progressing so chances are you may still be in the early stages. Urso is one of the biles that naturally occurs in the liver. Because pbc causes issues with the liver’s microscopic bile ducts, it obstructs bile flow & harms the liver causing fibrosis. Urso is one of the gentler biles so taking that will limit the amount of harsher biles that the liver makes & will slow the progression of the condition.
If you are a responder to urso & your pbc was diagnosed in the early stages, your life expectancy is the same as the average person.
I hope this helps. I know it is difficult not to worry, but stress makes any autoimmune condition worse. Once you establish rapport with your medical team, you will feel much better.
Hi, thanks for this I am starting g to feel a bit more positive after reading people’s actual stories rather then the horrifying stuff I’ve been reading online. I was told not to google but obviously what’s the first thing you do?! It sounds like I’m lucky with my gp reading other people’s posts, I think he was a bit miffed at why my bloods were constantly abnormal & not returning to normal levels since my gb was removed. I think he ordered every liver test going with the amount of forms he gave me for the blood clinic that day! Then when I got called back for the results I had no idea what it meant & as soon the words “liver disease” came out of his mouth I said But I don’t drink! It was a massive shock & I walked out of there thinking that’s it I’m going to die, & my children are going to be without their mummy, then you see posts online saying average life expectancy is this & that, I’ve been so distressed over it! Really glad I found this group. Will wait & see what the specialist says & take it from there. That’s all I can do isn’t it. Life’s so unfair at times & you ask yourself “why me” well I have anyway.
I just told my doctor the other day, “This is so unfair! Why do I have this stuff! I just want to enjoy my life!”
So he reminds me again that life expectancy is normal if pbc is caught early & you respond to urso. Still I can’t help, but have this nagging unease in the back of my mind. But what can you do?! We can’t control any of this, only how we manage our life going forward & try not to let this impact us too much to the extent that we can. Value our time & have fun!
Just be glad that this condition is treatable though uncurable. We can’t take life for granted & need to look for all the positives in our lives & appreciate what we have.
Can you imagine if you were in some third world country or any of these migrant countries, where people are suffering everyday though they may be healthy? Additionally, can you imagine if any of those people have pbc? They might not get diagnosed or even treated. So grateful that we are not in those situations.
Despite all of this, we should feel fortunate that we have caring & compassionate doctors managing this journey for us. Leave the worrying to them & live your life. They are looking out for you. Just look at the relentless way your GP went to diagnose you. You are indeed fortunate.
What about foggy brain. Do you have that? We do. Or will. Talk to us. We will listen. People who care about you will listen for a while but they just want you not to have it and not have to spend time listening to the same thing. You doctor and specialists will tend to give you pills, some of them are not easy on the liver. I think it's the worst symptom before you get itchy skin, tired and jaundiced. You don't think it's true that if you drink more than 4 oz of alcohol a week you'll progress more in the disease. I see fatty liver. You don't think if you eat fatty foods, processed foods and sugar or just a lot of food and not a lot of exercise, you won't get a fatty liver or type 2 diabetes. It actually is just like rocket science. Worse. Emotional environmental factors come into play. I've been on Ursodoil 30 years. I did all an athletic healthy person could do. Except completely stop drinking and drinking to excess, 2 or 3 martinis with a few months of just 4 oz every week b etween. I even cut meat and processed food. Could that have prevented me from entering stage 3 fibrosis? Who knows. I now have a lemon, cayenne, ginger, garlic, celery and vegetable drink every morning, eat no processed sugar, no meat, no dairy and take my Ursodoil. Will that prevent me from going into stage 4 and waiting in line for a liver transplant. Who knows. There's a clinical trial at Einstein Jefferson but I don't know if I'll get the new fibrosis reducing drugs. Keep texting us. We want to know how you are dealing with PBCyou have discoveries that would help us physically and emotionally!
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Diagnosis Today
PBC and new here.
WRONG PBC DIAGNOSIS
Maybe NOT PBC......perhaps Nodular Regenerative Hyperplasia?
