PBC Foundation
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How long has this pbc with me exactly???

Way back in 2002, I started suffering with itchy problems. I tried everything, my G.P tried me on so many different tablets, creams, lotions... nothing worked. Then along came severe indigestion attacks. I had a couple of blood tests for other stuff, but nothing seemed unusual. It was only last year, when I went to see my doctor because I had no energy and everything felt like a big effort. My get up and go, got up and went without permission!!! So began a whole load of blood tests until eventually I was told I had P.B.C

So, is it possible that it could have been responsible for the night time itchy dramas and the indigestion problems from 10 years earlier? Any ideas?

10 Replies


Have you read the PBC Foundation's Compendium about PBC? You can find very useful information there, even if not an exact answer to your question. It might be that those had been symptoms of PBC, but as far as I know nobody could state that for a fact, and even if so, not what lies behind but what lies ahead and what you can do do manage it best, can help you, I think. Diet, life style, positive mental attitude (Robert from the PBCF does some great workshops on that subject in the UK, as far as I know), self management of the condition can really really help a lot, many say. So good luck :)


Hi Cristina, I keep seeing mention of the PBC Foundation's Compendium but how do I get a copy? Is it available to download from this site, as, if it is, I don't know how to access it. Thanks, Wingding (Wendy)


Madmags, do you have any copies of lab results of years ago? My elevations kept showing for years, before some Dr. sent me to a GI for a diagnosis. This dr. did a biopsy, but could not determine what it was, in his comments he stated it could be the early stages of 3 different diseases. He didn't even have me to follow up with him.

Years later, my pain dr. pushed my PC dr. into finding out the cause of these elevations. After my ALK finally hit more than 500 and I was having digestion problems, he sent me to another GI dr. who did a 2nd biopsy, and this one was sent to the Mayo clinic. They confirmed it was indeed PBC stage 1 at the time of the first biopsy, which was in 1997. The 2nd one was done in 2003 and it was stage 2. Actually I had elevation of LFT's as early as 87 and 93.



I ask my GI DR what stage and he has no answer


This was just how I started a 3 year rd. Going to the GP exhausted,test and test, oh Rheumatoid ,, still feels sick sore stomach,chest pain, exhausted, oh you have bronchiectasis,,, on we go eventually thank you to great chest specialist, they found PBC.

So most of my sysmtoms are PBC. It is so un recognised and we are made to feel pretty mad, then one person listens hey presto!! Life is ok now, feel good some days and not so the others but i am not mad, hooray. x This site has given what friends and family cant or wont, you can decide,, x But we do survive...just bloody hard work.Diet does help, and just do things slowlt and lots of rest inbetween,, Good luck to all of us xx


Hello madmags.

Well it's probable that you had PBC for several years but I suppose you have to remember too that things change in the medical profession over time and I know for a fact that when my gran was alive she never had any of the checks that were around now just as routine.

I was offered an over 40's health check at the previous GP surgery on booking my first appt back in early 2010 when I started itching. (I declined at the time and glad I did as I had all the tests that are done in an over 40's check when the GP saw me. On the other scale I've not been offered any at this current GP I joined just over 2yrs ago.)

Myself I know for a fact that back in 2006 I didn't have the itch but I did have abnormal LFT that was never followed up from my previous GP surgery. I applied for life insurance at the time and though it wouldn't have paid any money back at the end of the term and was a 'just in case' it was rejected. I was quite shocked as I hadn't thought anything could be wrong, I never had been rejected before. (I did go on to get insurance from another company, unfortunately it expires later this yr and I won't have any now.)

So I dug further and was informed that it was a blood test I had done at the GP surgery that wasn't quite right. I contacted my GP surgery as they had submitted a report to the insurance co. and I was rest assured there was nothing untoward in this blood test (I was only aware in 2006 that I had a blood test for anaemia, had mild anaemia and a mth's supply of iron tabs and next few mths bloods came back normal. Wasn't aware I had the LFT at the the time).

It was only in late 2010 when I saw the hospital doctor for the first time that he happen to mention I had had an abnormal LFT back in 2006 and it should have been followed up. I informed him I had never been requested to do so plus I didn't know about this other blood test at the time.

I was annoyed when informed this and more annoyed when I was told I had PBC and could have perhaps helped myself a bit better a few yrs previously knowing I had something that at the time was quite invisible to me. It was the itch that made it come to light.

That is one reason that from the day I started having blood tests at the GP prior to diagnose I asked what the blood tests were for and even researched myself to find out what was the next step after having another normal blood test. I request the print-out even tho' they have been a bit of a nightmare to get from the GP surgery over the last 2yrs but I can rest better seeing the figures myself and can ask if anything untoward on them.

As for not knowing I had PBC a few yrs prior to to diagnose as the hospital consultant dropped in after diagnose, well the time had gone, I wasn't aware so at the end of the day can't do much about it now. I think at the end of the day it is the GP who we get from the start who can make a whole lot of difference. I think I was prob lucky that my GP did the LFT when I first went to him with the itch and took it from there tho' he did prescribed a piriton whilst waiting for the results of which given had PBC they did nothing for me but made me feel very sick all the time.


Madmags - the PBC foundation can be contacted through the link below. They have a lot of useful information on the site and if you join up / contact them directly, they will tell you how to get hold of the Compendium

To answer your question, I have had the same experience. i was diagnosed in Sept 2012 but I have suffered from the mad itches for years. I never went to a doc about it because I put it down to sensitive skin. I changed washing powder, shampoo, shower gel, moisturisers etc and never got any relief from it. It has only recently occurred to me - as I scratched the legs off myself - that I maybe had this plague for 20 years! I distinctly remember having a really bad itches when I was pregnant with my daughter and she is coming up to her 21st birthday. As far as I can recall, there was no routine test for PBC in those days!



Lisacj, a plumonologist figured out my PBC as well, I had chronic Pneumonia which he thought was connected to my liver...I thought he was crazy, but I am stage 2. My Doctor in SC is a British man...did all his schooling in England then came to a teaching hospital in the states.


It sounds like it from what other people on here have said...


Did you get diagnosed just from blood tests?


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