PBC Foundation
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an honest but useless Gastro consultant who needs to get educated on PBC

for the last 3 visits to a Gastro consultant i have seen the same doctor who is as informed as i am about PBC, although i did need to point out the amount of Urso to weight ratio to him, but he was happy for me to up my dose but did not think i needed to. However, today i see a different doctor who actually said, i have never heard of a non alcholic related liver disease before, is there a foundation or something for it. luckily i had my latest copy of the Bear Facts from the PBC Foundation with me to read in the waiting room, so i showed it to him. oh, he says, so there is a foundation for it, when and how were you diagnosed, what are your symptoms? All the while, i am thinking "what a waste of time this appointment is, i know more about my disease then the consultant".

however, after getting home and thinking about it, maybe!!!! he will now go and look it up and educate himself, here's hoping that we will soon have one more PBC educated consultant on the books!!!!!!

9 Replies

Why do WE have to educate our consultants???They have been to uni for how long? They are paid how much? Our taxes go where? They are there to help us? This seems to be the case with so many of us, do you think the foundation reads our blogs and know's just how hard it is for us? I wish just one doctor gets PBC may be then soemthing may be done.. :(

Good luck to all of us, x


Well I cannot believe a doctor could actually make a comment that they have never heard of a 'non alcoholic related liver disease'!

There is one known as NASH which does stand for Non Alcoholic SteatoHepatitis. I stumbled across this back in 2010 when I kept having blood test after blood test that gave abnormal LFTs and also other such related ones - GGT - to the liver.

I started finding out what the next blood test was for (bone, copper overload, etc) and started wondering myself what if anything was wrong with me as I only had fatigue and itching. I'd have ignored the fatigue as at the time working around a 48hr wk between Mon-Sat with no two days off together for 6mths but it was the itching that took me to see a doctor.

Since diagnose I have had nurses at the GP practice I was with until beginning April this year keep asking me every time a blood test was due how much I drank prior to diagnose (I rarely did but started to feel like just saying I 'used to be a heavy drinker'!).

Had my first repeat bloods at another practice I am now registered with last wk and the nurse actually said what the letters PBC meant when I said why I was having the bloods taken. She even knew about the GGT which the old practice seem to be intent on missing.

I now have a first appt with a GP at the practice as being a new patient and just having bloods back ('stable' doesn't mean much to me without the print out yet to get), the lady doctor there wants to see me apparently to arrange when I go for bloods taken, etc. tho' I do think it is because at the old practice the admin staff there failed to update the Med Review date and it was still stating Oct last yr despite them informing me last year when I asked about it that it had been altered.

Watch this space after I've been as I have not got much of an idea whether this new GP is inquisitive about a patient with PBC or if she knows about it or she knows nothing at all yet.


I guess we need to remember how little is known about PBC, so when you see a gastro they are a Jack of all trades with regards to a huge list of Gastro problems, so they are going to know even less. Best bet is to insist on seeing a hepatologist who will know more than anyone else.about livers..which isn't a great deal anyway! I was lucky enough to be referred to a PBC clinic who gave me the PBC Foundation contact details. Now they DO know what its all about


Although it is fair to state that there's not much known about PBC., how we come by it and even how it progresses, as I see it, if one visits a doctor in the field of gastro-enterology or hepatology then that doctor should know how to interpret blood tests and various other tests and how the liver functions along with bile ducts as in case of PBC.

I was originally informed back in 2010 after the GP apparently exhausted blood tests (tho' I think now he could have done the AMA one as opposed to making me wait 3mths to go to hospital), I was to be booked in to Hepatology Dept at local hospital. The letter stated this but when I got there to Out-Patients when the appt finally came around, I didn't see anything in the clinic to suggest livers, it was all leaflets on kidneys, dialysis, etc., etc. I did wonder at first if I'd gone to the wrong dept!

Altho' I thought I was seeing an hepatologist I think the consultant is a gastro-enterologist as I discovered at a later date that my mother's cousin has been seeing him for years with a bowel condition that has nothing to do with liver.

But this doctor I did see at hospital on the 3 visits I made in 12 months (I asked to be discharged back to GP, he agreed after discussion), he did seem to know about PBC, informed my husband what it was and one thing I'd not told my husband prior is that PBC can in some cases lead to transplant. He said he was giving talks on PBC to GPs at the time and I know at the old surgery I recently left, the one GP I did see there he did state that he was booked down for a course on PBC in the near future.

I think at the end of the day a doctor should be able to spot a patient referring to certain symptons once PBC diagnosed and be able to then deal with those if it could be connected to PBC.

As I understand it for instance if a patient reaches a cirrhosis stage (in PBC) that can be lengthy or short it is about the same condition as someone who's developed it not via the condition but something else. Of course the differences is that someone with PBC cannot halt that progression like someone who develops cirrhosis from alcohol as with the latter the damage is there but it can be halted if drinking ceases.


Now I know I am not imagine the fact that our GPs don't know much about PBC...I don't know about you guys but every time I go to my Gp surgery I see a different doctor and every time I have to explain to them what is wrong with me as they do not have a clue. I have AIH/PBC overlap, I also have hashimotos disease so as you can imagine I feel like crap on any given day. I am being treated with steroids which I hate, and mercaptopurine; the hashimotos is not receiving any treatment and to be honest the symptoms I am suffering most are to do with that.

My point is that why do we have to educate our doctors about conditions they should already have some understanding of. I see a gastro and she had been really good, but I don't think the hospital I am at has a dedicated liver unit...I think my nearest one is Leeds...I think that yes some gastros are good and specialize in liver conditions but I think I am at the point where a visit to a hepatologist in a dedicated liver unit may be of benefit to me...but I would not want to upset my gastro as she has been very good with me.



Well agree there the GPs don't seem to know much about PBC though it isn't rocket science for one trained in blood checks and results to interpret them. That is what I cannot understand really, not the fact that it is the words PBC to them but the fact they are dealing with a patient with 'dodgy' LFT results and certain symptons as I thought they were supposed to deal with those in the foremost.

Yesterday when I saw this new GP who had hauled me in because I was a new patient, as nice as she seemed, she appeared to me to be quoting off one of the NHS sites. She mentioned the word 'illness' a few times so I corrected her, told her I don't see it like that at the moment as no-one would think I had anything wrong. It's the evening when I start feeling prickly due to the itch and get restless with it during the night at times that I know I have this thing.

I also decided to plunge in and tell her I probably know more about PBC than she does! She said a few things I didn't agree with but I let it go as I now get fed up of having to go through things again and again and in the last wk I've had the practice nurse at this new surgery as well as the GP yest.


I can certainly believe this, since I have had nothing but a poor experience with my gastro Dr..I am in the process of changing over to another gastro Dr. that I researched, to make sure they are knowledgeable about PBC. The best thing is to see a hepatologist, but for me that is a 3 hr. drive, however I did go visit him to get all my questions answered, since my gastro dr. referred me, because he knew nothing. 5 months later, my gastro Dr. still knows nothing so apparently has not bothered to educate himself. He said to me, "Wow, you've certainly done your homework....you know MORE than I do about this PBC stuff." When I was leaving, I asked him when was I supposed to come back for a bloodtest & he said, "Who told you you need another bloodtest?" Need I say more????? It's pathetic isn't it?


I would have got up and walked out after the first sentence! Talk about incompetent it's a bloody discrace and he needs reporting!

You may as well have been talking to the toilet attendant he would probably have known more!

Which liver doctor was he? His name? and area?

Seriously I would inform the hospitals trust and discuss this with someone!!!

Bloody disgusting and typical of our consultants, their having a laugh at our expense x


I once saw what i call a locum consultant as the others were on holiday and one had a cold, i was annoyed about this even before i walked through his door after seeing it on the written on clinic notice board in my opinion they should have cancelled the clinic.

hew was a clinical surgery consultant, i walked in and he said, I am DR so and so and he said How are you going on so i just replied how do I know, you tell me thats why I am here.

some of these people are just having a laugh and getting paid for knowing nothing.

I know it's five months since the last post but I have seen no one at the hospital for over 12 months now and getting a little pi&&ed with them all.


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