Hi everyone. I was wondering how often you have your blood taken to check the progress of PBC? After I was told I have PBC my Gastro. told

[2006]

Me to look it up for information. Then he said he would see me in 6 months and would check my bloods again and a c scan.

I think I might look for another Doctor. Not that I don't believe I have PBC - just a better Doctor!

[Hidden]

I havent seen my gastro now or had a blood test for 16 months, all i have had is a form / letter from the hospital asking do i still need to be seen or have i recovered from my illnes,

I have just given up and just keep taking the pills.

[Hidden in reply to Hidden]

Hiya Linda.

I cannot believe that you have not had a blood test for LFTs in 16mths now.

I know when I got my first out-patient appt with what stated Hepatology Dept on my hospital letter back in late 2010, after I had the first appt., the consultant informed me that I would receive my next appt through the post due to him taking the antibodies test that day and waiting that bit longer for the results.

I duly received an appt after the GP received his letter with my diagnosis that he had to transmit to me. The day I went he asked me to make another appt at the reception before I left and said '3 months' but I negotiated for 6 months as I was fed up on my first appt with all the wandering about here there and everywhere and sitting in various areas, my 2nd appt was worse, having the consultant's voice booming my name from some room down a corridor of which I had no idea where he was, put me right off. When I went back on my 3rd appt Oct 2010 I informed him that I didn't want to continue attending the clinic for the foreseeable future. He wasn't impressed but did agree that at the time things were pretty stable and he'd discharge me to the GP with the words that in future I might have to start going back.

Have you mentioned to your GP that you haven't had any repeat bloods for awhile? I would as the GP nurse can then take them.

I know I sometimes think I'd rather not know but with t his PBC difficult to tell if you are doing good or bad really. I've had worse results when I have felt fantastic and good when I thought I wasn't doing so well!

[Anne123_45 in reply to Hidden]

Really Linda that's shocking..

[mumofthree in reply to Hidden]

I was diagnosed in Jan 2011, I saw my gastro registrar and had a blood test 3 months later, repeated after 6 months and 6 months after that in April 2012. I was given a bloods form and told I was to have them done 2 weeks before my next appointment which would be in 12 months. I am still waiting for that appointment which should have been April/May 2013. So I have not had a blood test since April 2012.

I once asked my GP if they should be carrying out regular blood tests considering my gastro appointments were to be 12 months apart, and also going on what I had read on here - I was told there was no need for regular blood tests and if others are having them more frequently then they must be more poorly than I was....so make of that what you want. To be honest I have more or less given up with them and only go there if I am absolutely desperate. On the few occasions I have brought up PBC and concerns that I may have, I was told they do not want to interfere with my PBC treatment and it is best if I bring it up in my next appointment with the Gastro.

I have been feeling pretty good other than the occasional flair up, so did not bother chasing up my hospital appointment. But this last few months I have had a few flair ups which have knocked me for six, the last being on Friday. But trying to get an appointment with our GP practice is near on impossible. I have tried each 'working' day since last Friday but have failed to get one. We are not allowed to book an appointment in advance, to get one we have to ring the practice on the day at 8am...not before 8 as you get an out of office message... but come 8am the phones are continually engaged because everyone is told to do the same thing...its so frustrating. There is not a facility to be placed in a phone queue you have to redial each time and more often than not by the time you get through there are no appointments left....so annoying ....Personally I find it ridiculous, I believe that if you have a non-urgent problem you should be allowed to make an appointment a few days or a week in advance therefore allowing the 'on the day' appointments for more urgent/immediate problems. Failing to get an appointment with the GP has forced me into chasing up my hospital gastro appointment again. I was told my original gastro consultant is no longer there and the remaining Registrar has a very long list!!! I was therefore given the phone number of the gastro nurse, I left her an answerphone message but am still waiting for her to contact me....Oh well rant over, Sorry all.

[Hidden in reply to mumofthree]

This is exactly the same problem I have Mom of three, we have to ring or go and queue up outside the surgery in the cold at 8am and beg for an appointment and our surgery is a car journey away. I was thinking of writing to the BMA about the treatment or lack off that my self and my hubby get, he was turned on by one of their rottweilers the other day over the phone and at the time he was in asda chemist, it was his own dam fault that is repeat prescription hadn't got back to Asda as he didn't write Asda on it, would be nice if someone told you that you have to do that in the first place.

[2006]

2006 Hi Lindaclark. That is crazy! I think you need a new doctor too! I went around and got copies of all my tests and blood work now I am making an appointment with someone new .

[Hidden in reply to 2006]

Hiya 2006.

I hope it works out for you changing doctors. If you are in the UK then hope you strike lucky. I was with a GP surgery I had been with for many many years back in 2010 when I started with the itch. There was a new young doctor in surgery and he managed to switch me off not long after he started taking blood tests after I started with the itch. He was steps ahead of things and had put me down for the endoscopes (both routes) early on to which I said no way. He then mentioned liver biopsy before I even got to the hospital first appt. He was off-handed the evening I went to see him when he gave me the diagnosis and I was feeling very annoyed due to the fact I knew he was going to say I had PBC (I asked receptionist when she rang to say I'd to go in and see GP, he wanted to giveme medication so I asked her what it was). He had not given the appt to see him any urgency and I had waited 6wks for the results. Receptionist informed me the appt she was making for me to go in was only 6 days off. My husband intervened at that time knowing I had whispered to him I did have PBC. He managed to get an appt within the following half hr (we were only 10mins walk away from surgery).

I switched GP surgeries after starting urso but that was out of the frying pan into the fire! The next GP surgery, not one of the doctors had a clue about PBC nor were they willing to look anything up. I did take in the GP booklet from the PBC Foundation they kindly sent me but that fell by the wayside. I had had enough later 2012 when the GP didn't even bother to comment on my blood results, I went in for the print-out and had to look them over myself! Yes the bloods did look fine BUT had I not bothered to ring for a print-out I would never have known and doctors can and do make mistakes.

The surgery I joined Feb last year, seems OK but depends on which GP you get when you go for blood results or repeat prescriptions. I got the gist at the surgery I ceased going to prior to this one that the GPs would rather I just went to outpatients all the time as opposed to seeing them. My thoughts here are that LFTs and FBC are relatively common blood tests to read the results of so there should be no problem a GP doing so.

[Hidden]

I would have thought every 6 months is fine unless bloods are very high or changing or scan shows anything untoward.

Lou

[Jeannie31]

I agree with Lou. I think every six months is fine. I have an ultrasound scan and blood tests every six months. The last time I saw my consultant was two weeks ago and my lfts were only very slightly above normal. I'm to see him again in six months plus another scan. I do think I'm lucky though I'm happy with my consultant and my GP and my symptoms at the moment are very few - mainly fatigue.

[Hidden]

Hello 2006.

As I understood it, you tend to be monitored a bit more frequently with the bloods (I had them every 3 months) after diagnosis to check how well urso is performing. If you are not on urso due to LFTs (liver function test bloods) being normal then I expect it might be more spaced out between having them taken.

I don't think anyone can actually say for definite the ideal time for anyone to have checks of the LFTs (and others that are taken, GGT one and full blood count (FBC) another) as each of us will have varying results. I expect if the LFTs are dropping but at a slow rate then perhaps 3mths check as I did in the first 2 years. It also depends on your doctor. I agreed with the hospital consultant 12mths after seeing him that I wanted a discharge (Oct 2011. I was diagnosed Dec 2010) due to the fact I felt it a bit of a pointless exercise trekking to the hospital to see him for what happened when I went there and also at what I would say myself an early state of PBC with just itching (fatigue left me during 2011). In his letter to the GP with instructions he was vague with the length of time between bloods but did suggest perhaps 6 months.

I had two 3 months bloods and there was a slight rise so the GP asked me to continue going in at 3 monthly intervals. During the latter part of 2012 my bloods were dropping so the new GP I registered with reckoned I should go in at 6 monthly intervals. I had my first bloods done at 6 months middle last year and there was a climb so I was back to 3 months. Since my last bloods that were done and no GP contacted me Feb 2014 (I did get print-out, all the expected abnormal ones said 'OK for this patient with PBC'), I now have no idea when I am expected to go in again so shall wait and see when I next order the urso again as the medication review will not be far off.

I think 6 months is quite acceptable actually, I would find the 12 monthly blood repeat a bit worrying myself but as I stated, it depends on individuals. Some do have their bloods annually as they might have had PBC for some years and things aren't really changing.

Going back to the bloods and repeats I do find it silly that sometimes you have to ask the GP about having a repeat of them done if you yourself are worried about something and it has been a few months. The LFTs, the FBC and also GGT are simple blood tests that get rapid results. I know when I have mine taken, it is the following day the GP has received them back as I've had a couple calls from this new surgery I joined Feb 2013 and the results were not significantly higher or lower than my previous ones so not of an emergency. At the end of the day it all comes down to that sad factor, money.

[Oidra]

I see my PBC consultant every 6 months. I have my LFT done at my doctors so I have the results before I go in case there is anything I need to discuss about them. I only have a scan about every 1-2 years.

[judyt]

I have bloods every 3 months and an ultrasound scan every 6 months. I live in NZ and am a private patient because the hospital is not interested in looking after me. I see a Doc. who is on the Transplant Team so I am seeing the best which is a comfort, but I feel a bit deprived by having to look after myself basically.

[Hidden]

I have filled out the form and sent it back after making a copy of it, next time I go to my gp I will make a point of showing it to him, and anyone else who wants to see it.

[IOW-gal]

I have a blood test every six months. An ultrasound annually . I was seeing my consultant every three months then every six months but on the last visit she said she didn't need to see me for a year unless the intervening blood test had shown anything untoward . My next visit is not until this coming July so fingers crossed everything is doing OK.

[susanburgess]

I have blood test and ultra sound every 6 months had this for over 10 years.

[Hidden]

I take bloods and see Hepatologist every month and ultrasound ever 6 months (in Canada) as she wants to follow progression closely.....at times, she may ask to see her in 2 months but mostly monthly.

Hope you find a better Doctor.

[Mimigal]

I have blood work every 6 months. I'm not on any meds, I was told I had PBC 2011. I still feel great no symptoms yet. I'm 66.

[Ellanvannin]

I go every three months for blood tests. Just had results and unfortunately cholesteral was up and ACE levels were raised but that points more to the sarcoidosis than the PBC.

G.P. has written to consultant for an earlier appointment.