Bit of an epic for which I apologise.

[flowerpower66]

This is copy of the letter the consultant has sent to my GP. Do I have PBC? The consultant didnt ask me about tiredness but he does mention pain. I have had my thyroid/ b12 and a whole host of other blood tests rechecked last Thursday so hope the results are back with dr today. Am I right in thinking that because my LFts are ok the consultant doesnt think I have PBC? There are some smart people out there.

Thank you for refening this pleasant 47 year-old lady to Dr Kriel's clinic today. As a part of her

investigation for muscular skeletal problems a ferr months ago she had an autoimmune profile which

has revealed positive M2 antibodies. These positive antibodies are specific for people who develop

primary biliary cirrhosis but reassuringly Mrs Young does not have any typical symptoms and has

always had normal liver function tests based on the tests that we have for her on our system. She has

also never noticd herself to be jaundk-d.

She possibly has other auto immune conditions like hypothyroidism for which she takes Levothyroxine

and she does have a diagnosis of pemicious anaemia as well. We know that people that have one autei increased_chance of developing_other autoimmune eonditionsas__

well therefore I have informed her of this condition called primary biliary cirrhosis. I have also told her

that she doesn't have a full diagnosis for it but she does have a positive M2 antibody which is specific for

this condition. With her liver function tests being completely normal she does not warrant any treatment

as such and it would be difficult for us to guess as to whether or not she will have any abnormalities in

her liver just based on these positive tests.

It would be however useful to keep an eye on her liver function tests every now and then and should

there be any abnormality we would be keen to see her back in this clinic and take things further. As of

today I have asked for an ultrasound of her abdomen to ensure that her liver architecture is normal but

have not changed her management as such. The other bit of history that she tells me is that she has

hg.d a slight change in her bowel habit and whereas previously she was opening her bowels once a day

without any problems over the last two years she has noticed that she gets a feeling of incomplete

evacuationand bloating with passage of offensive flatus. I feel that this could be explained by her

suffering from constipation and simple laxatives would be helpful. I have reassured her in this regard. I

have not given her any further appointment in this clinic but as mentioned previously should you ever

find that she has abnormalities in her liver function test

[nomorepies]

I think I would be happy enough with what the consultant has written, he acknowledges the positive AMA in your blood tests and suggests that your GP monitors your LFT's for any changes, if they become deranged you will be referred back to the consultant.

[NotorDJP]

I agree with nomorepies. I think he is acknowledgling you are AMA positive and that you may go into PBC in the future, but since you have no other liver function test abnomalities you need no treatment at this point. I'm in the US and I know a few other people that are not taking URSO yet, but are AMA positive and know that they will someday have to go on treatment. Some people never move past your stage either, but you are catching things, very very early. In the US you would be designated as pre-PBC, but only after a biopsy was done. You would not be sent for a biopsy here either, though, since your tests are normal. Biopsy is the gold standard here for diagnosis. That isn't the case in the UK though. I personally am AMA positive, my LFTs are very high, so I am being sent for a biopsy on Monday which will give me a definitive diagnosis, where they will then start me on treatment.

[flowerpower66]

Thank you nomorepies and NotorDJB for replying. I think that I am looking for a reason as to why I feel so crap all the time. I am re checking my under active thyroid an d b12 (both autoimmune)I will carry on with my detective work.

[NotorDJP]

From what I understand, and I am no expert by the way, fatigue can happen at any stage with this disease, even if you don't have high LFTs. But your LFTs being normal is showing that your liver isn't under any distress yet. I wish mine were normal!

[teddybear7]

My liver function tests are normal. I'm not jaundiced this is apparently advised to me as a late stage. But I have lots of the other symptoms.Including unexplained bruising and itching My ultra sound was also normal. I am on the urodoxycholic acid and scheduled for a biopsy and I'm in the uk. So not every where treats people the same. Hope you get answers soon.

[Hidden]

Hello flowerpower66.

Well reading the letter, it sounds to me that your consultant does make sense and I have read once upon a time that often patients with PBC who have the blood markers for it but who have normal LFTs (I suspect your GTT is also normal then) and no symptons of PBC which you currenty do not appear to have, you are simply monitored for any changes that may occur.

As I understand it, patients with PBC who have abnormal LFTs like I did back in 2010 and who test positive for the antibodies for PBC (AMAs) are usually started on urso. I was also symptomatic as I still am, I itch (at night).

I believe that one with PBC who has normal LFTs and no symptons their PBC is either in a sort of suspended state or hasn't kicked in. It might never progress or if it did, it might not happen for many years.

I do think that knowing you have PBC or in your case it has been suggested as a diagnosis then in a way you have an heads up. You can change certain things in your life to live as healthily as possible. You can plan to live your life as you want to do so and though I expect you'll worry and think about PBC at times, the more time goes on and the more you receive normal LFTs will set you at ease that much more.

I had a scan back in mid-2010. Mine showed a pretty much normal liver and surrounding organs. It does tend to be the GGT that when abnormal is stating at the time there is some inflammation of the liver. Mine was abnormal back in 2010 (still is but not as high as it was in 2010) but apparently I'd not had PBC overly long (consultant said it appeared I'd had it 'a few years').

By having repeat LFTs at intervals you will be receiving a positive response from a doctor.

To add, jaundice usually comes a bit further with PBC apparently. But that can be dealt with at the time.

In my mind there is no use worrying unnecessarily about something that may never happen. Easy at times to say do not worry but trust me as time goes by and you feel on an even keel as I do at present then the worry does lift until another time.

[ReiversMrs]

Hi I tested strong positive for AMA, I have itch fatigue and joint pain but normal LFTs, ultrasound shows a bright liver and a cyst on liver, Im in the uk, I have been diagnosed with PBC and sent for bone scan ( not sure why) nothing subscribed due to normal LFTs, I am now being monitored, I would say to you read PBC pack and if further things develop go back, I had no idea I had PBC, I was referred by dentist for dry mouth and all this came out after gp had put it down to stress , Good Luck

[NotorDJP in reply to ReiversMrs]

I had a bone scan too. Osteoporosis is common in people with any kind of liver disease due to calcium not being absorbed properly. I am being monitored too for that.

[ReiversMrs]

My mam and nana have osteoprosis, but the drs dont know that

[flowerpower66]

Thanks everyone. I have decided to stop thinking about PBC for now. No point in worrying about something that may not happen.xxx good luck to you all.x