I'm new here. First, I would like to thank all of you for this wealth of information. For the past 5 or so years, I have been a daily drinker and I have recently started getting symptoms that seem to be consistent with PBC. Back in the July- August timeframe, I got blood work and asked for an abdominal ultrasound. All normal.
I have recently cut back on drinking 90 percent and going forward, I plan to cut it out completely. However, last week I drank quite a bit of wine and I have been itchy ever since. It is beginning to subside; however, could anyone let me know the chances of having PBC despite normal bloodwork (AST and ALT) and a clear ultrasound? Should I follow up with my doctor? Thanks in advance!
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shamrock79
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Hello shamrock79.
I am not fully understanding of your posting so forgive me.
You can have itching with any liver condition as well as PBC so it could be another liver-related disorder.
Abnormal LFTs (or liver function test as they are known) can show up for varioius other things as well as liver problems. Certain medications for instance can alter them as can a bone-related problem.
The only way to know if one has PBC is by an antibodies test which along with abnormal (or elevated) LFTs and symptons can give the diagnosis as was in my case (3 criteria) or a negative antibodies check if a doctor might suspect one has perhaps got PBC would be by liver biopsy to diagnose PBC.
It could be that your body is perhaps telling you it is not fairing so well with alcohol and the only way to know would be to abstain for awhile to see.
You might be better checking online with the British Liver Trust site, they have information on all the liver conditions as this is really only one that tends to deal with PBC.
Thanks for your response, peridot. I believe I initially posted in the wrong forum. I thought pbc was primary Billiary cirrhosis. Everything you said makes perfect sense and I plan
Hi Shamrock, have you actually been diagnosed with PBC and it is Primary biliary cirrhosis. I think Peridot meant she didn't understand your post as you didn't say you had been.
Why don't you try some non alcohol wines we found a nice rose coloured white zinfandel in asda that tastes like " proper " wine.
What I meant when I said I 'wasn't fully understanding of the (your) posting' was shamrock79 did mention sypmtons seemed to be 'consistent with PBC'.
I think sometimes we can read something and have one or more symptons and in the worrying about it can then wonder if it pinpoints to whatever we have read about.
I did stumble across this condition myself during 2010 but never mentioned to a doctor. I actually hoped I'd not got this PBC and kept myself under the illusion that if I got rid of the itch I'd be perfectly fine once more. Of course that never happened and I was diagnosed with PBC.
I have in the last 6 months had of a rare occasion half a bottle of non-alcoholic beer. Found that one called Erdinger seems to be quite good. I don't know if there is a difference tastewise between this one and the alcohol one Erdinger as I have never really bothered with alcohol prior to 2010 and only tended to have of a special occasion (ie 24 December at family party, my wedding in 2009, etc). I think the other non-alcoholic one is IPA Dog or something like this. I knjow they are sold in the supermarkets. I have put one of the Erdinger down for my 25th December lunch at home with family though I only manage half a bottle, my husband will drink the rest as he often buys something like this when out driving in leisure time so has got quite used to them.
PBC did used to stand for 'Primary Biliary Cirrhosis' , but the name of the condition has recently been changed to 'Primary Biliary Cholangitis'. This change took place because cirrhosis (severe scarring of the liver) was no longer an appropriate name for PBC, as this level of damage hardly happens any more, and people with PBC now rarely dies of the cirrhosis, as the development of the drug urso, and earlier detection of the condition, have improved life - and life expectancy - for the majority of people with PBC.
PBC is an autoimmune condition, as is not related to/caused by drinking, although alcohol will further impair a liver that is already struggling with the condition PBC.
As Peridot says, the itching is typical of other liver conditions, not just PBC, and it would be a good idea to talk to the British Liver Trust (they have a site here on 'Health Unlocked', with a link at the top of their page), as they will know all about the likely causes of all the symptoms you have experienced, as well as being able to interpret your blood results - try to have a copy with you when you phone/email, as they may want to know about more than ALT and AST. [NB You are entitled to a copy of your results from your GP, just ask at reception - there may be a small charge, but it is your 'right' to have a copy.]
High ALP is most common for PBC, I believe, but for a diagnosis of PBC you would need to have two out of three of the following:
1) Test +ve for 'antimitochondrial antibodies', although some people have amas, without ever developing PBC [and a small % have PBC without having AMAs].
2) Have consistently elevated levels of the 'appropriate' liver enzymes for over 6 months.
3) Have a biopsy that shows liver damage consistent with PBC.
1 and 2, together, are usually enough to diagnose PBC, but if symptoms of PBC are present and only 1 or 2 are there, then a biopsy will usually be done.
It may well not be PBC, but they should be following up on the itching, in case of other liver conditions, so talk to the BLT.
Hope this helps, take care, try not to stress - and maybe ease off the alcohol for good, if possible.
Gritty reads, I wish my liver knew what you just quoted " that this level of damage ie cirrhosis , hardly happens any more". ! There is a significant minority who, in fact, do have cirrhosis and get up every day to deal with this fact. In my own case I was diagnosed 12 years ago at 38. While juggling raising 4 children and working as a nurse I took Urso and hoped for the best. I am now on the trial drug OCA and have extensive cirrhosis. PBC does not have a straightforward trajectory and while we all know it won't actually cause our demise, many of us face huge challenges dealing with the fallout of this chronic disease while living our lives as best we can. While I understand the value in encouragement for those recently diagnosed, this is a serious condition - for some more than others.
I am still confused regarding the name change of PBC Gritty Reads.
I did have cause to contact Liver North several months ago as I receive their newsletters and asked when I could expect to see the last letter in PBC changed. Apparently it won't be until it is 'out there' and well-known so expect to see it used as the original terminology for the foreseeable future. I know my GP surgery are still unaware of this 'name change'.
Regardless it makes not much difference to me. I haven't much cause to use the full terminology and at the same time I do9n't think the new name change is that good, first thought I had on it when it was originally mentioned was that 'cholangitis' sounds something that you can get rid of like tonsillitis, laryngitis, etc.
Hi Shamrock! I agree with the other replies here. The short answer is yes, you can have PBC with normal AST and ALT and a clear ultrasound.
I would say yes, you should absolutely follow up with your doctor, preferably a liver specialist, because it is abnormal to be itching for a week after drinking wine, even if you drank a lot.
Something isn't right. A liver specialist can order further blood tests and other diagnostics to get to the bottom of this.
Like GrittyReads and Peridot suggested, call with blood testing reports in hand. You might have already been tested for some things to rule out PBC. They might help narrow down the probable causes to guide you in your research. I've found that being as knowledgable as possible beforehand helps a lot when going to the doctor.
I have to agree with Karaliz here on the prevalence of cirrhosis in those of us with PBC. It is not as uncommon as may be thought for us to develop cirrhosis as anyone reading posts in this forum may see. A lifetimes non drinking does not alter this fact. I thought the name change was related to the commonly held erroneous belief amongst professionals as well as lay people that cirrhosis always relates to alcohol abuse.
Thanks for all of your replies! I have not been diagnosed with cirrhosis. Just the opposite, clear bloodwork and US, but some disturbing symptoms. I am going to lay off the drinking and retest after a period of abstinence.
Follow your own path. PBC was diagnosed for me by accident. But I have not had high LFT's for six months - just about three months now. The word cirrhosis just means "hardening" really - as in parts of your liver when they are badly affected by, for example, alcohol, they harden and don't look like healthy liver tissue any more but it has become associated with alcohol, and that is more the reason they changed the name. If you check out the actual PBCFoundation.Org website, I think they fully explain the reasons for the change. If you feel that refraining from drinking is good enough for you, then that's great. But remember, if it is PBC or, to be honest, anything else, the sooner you get a diagnosis, the better your chances of staying healthy for longer. Do you want to waste another six months of your life when you could stay six months more healthy, if you know what I mean?
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Ultrasound with shear wave elastography
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