PBC -Have I got it

[bloomy]

I have had 3 blood tests over the last 3 years to see if I have got PBC. I have just had my third test and the doctors have informed me that my Liver is functioning normally and that PBC is not showing. However I am showing many of the symptoms for PBC, constant itching, fatigue and tiredness, ocassional diarrhoea with foul smelling stools, these symptoms have really come on in the last month. The reason I was tested previously was that my father and younger sister are both in the advnaced stages of the disease and until I started getting the symptoms believed the doctors that all was Ok. I am due back to see the doctor on Monday and wonder what I need to ask her if my liver functions and blood results appear to be normal.

[littlemo]

Ask her/him to do a AMA blood test this checks if there are anti-mitrochondrial antibodies in your blood if you are positive for this it is possible (not definate however as this AMA is present in 95% of people who have PBC and drs often diagnose the condition via this test,abnormal lfts and symptoms of PBC in the patient. However also bear in mind other conditions can give these symptoms too but whatever it is your dr will need to investigate it further specially if your symptoms are persistent. Best of luck.

[bloomy]

Thank you for your prompt reply and will indeed ask them to an AMA blood test. I realise that the symptoms could be something else but with PBC in the family with my father and younger sister I am obviously concerned

[Hidden]

I presented to the GP in early 2010 with itching having no prior knowledge of PBC. I had my bloods done and they showed abnormal LFTs. The GP then started doing other bloods to check for this and rule out that and then after getting a blood result back that would inform him whether the problem was liver or bone related he sent and he said it was pointing to liver he sent me to the hospital for a scan.

The scan came back pretty normal with nothing else showing untoward either but my LFTs were slowly inclining.

I had to wait 12wks for an appt to see a hospital consultant and that was the beginning of Nov 2010. When I went to the hospital I thought I'd had the AMA blood test via the GP as I had a final blood test done with the GP but failed to find out what it was (was informed it was copper).

I had to wait 6wks for the results of the AMA that was done at the hospital that day and was then told that it was showing 'a high titre of the anti-mitochondria antibodies' that could give a diagnose along with the sympton of itching and that year tiredness and fatigue.

It is true that symptons can be something else and I have since read on this site that a lot of contributors and responders have managed to have the AMA taken via their GP which back in 2010 had my GP been a bit more on the ball then maybe he could have done that and I would have got a sooner diagnose.

To note, at the same time I had the AMA blood test, I also had the one for ANA (anti-nuclear antibodies - that showed nothing untoward as in negative think it says on the print out) as both of these can cause different liver conditions which also show symptons same as PBC.

[Hidden in reply to Hidden]

PS To just add, it is possible that one with PBC can actually have normal LFTs. Quite a few on urso after diagnose do return to normal LFT blood results. Mine are currently still dropping but they are what is considered within a normal range for one with PBC as I asked last yr.

[bloomy in reply to Hidden]

Thank you peridot for this information, the more I can go back to my doctor with the more I can try and get them to help properly

[Wendom]

Hi there Ama is now diagnostic even in people with no symtoms I have positive Ama and always have had normal liver function tests but was started on urso in December as I have upper right quadrent pain daily severe fatigue for the last 6 years also itching for about the last 6 years my new consultant said my liver functions would of gone out sooner or later so he has started me on urso it sounds to me that you have the symptoms also the family history is there too I also have a positive Igm this is also indication of pbc also in the bear facts magazine the liver specialist said that Ama alone is now enough to diagnose Pbc even in people who are asymptomatic my consultsant is apparently billary expert and had worked at transplant unit he told me that only in America and the older docs still wait for elevated liver function tests but research suggests that Ama alone is now diagnosis my Ama is low titre too even so I know myself I have pbc unfortunately can I ask what ages yourself and your sister and father are hope you don't mind me asking I'm 47 noticed symptoms around age 40 also I tested positive for Ama in 2006 and 2008 but wasn't told until 2011 because my liver functions where always normal my previous doctors completely ignored my Ama it was only myself that insisted on aotoimmune tests that I found out about the pbc in 2011 or I would still be suffering and still be none the wiser you really need to be tested this is my story sorry its abit long hope it helps Wendy x

Ps hope your sis and dad stay well x

[bloomy in reply to Wendom]

Hi Wendom, I am 49 and was first tested for the disease about 4 years ago. My father is 80 years of age and was diagnosed with the finall stages of the disease 10 years ago. My sister is 2 years younger then me and was diagnosed shortly after my father. My father has responded to treatment pretty well but my sister hasn't. She lives in the US and not sure what treatment she is getting there but the disease and symptoms affect her really bad.

[Wendom]

Hi bloomy your dad seems to be doing well considering he's had final stages for ten years did he have any symptoms is your sister in final stages too I have read many times that you can have very bad symptoms but be very early stage they say my liver scan is normal yet I've been sick for years the liver pain is daily and awful have you had normal liver function tests and negative Ama and is your dad and sister Ama positive a small percentage still have pbc but a negative Ama I would push the docs because at the beginning of my journey a good few docs said I didn't have it I knew better had all symptoms fatigue dry eyes and mouth itching intolerance to alcohol and the awful liver pain I pushed to see a liver specialist and was told I did have pbc then the following year I was told I don't have it yet I argued with the consultant and told him he was ignoring all my symptoms and my 10 yes 10 positive Ama tests including 8 of the Ama -m2 which is even more definitive do he said ill go and get you a second opinion this minute he came back in the room with a new consultant who sat down went through all my tests listened to all my symptoms then right in front of the other doctor told me I have pbc and he was starting me on urso immediately couldn't believe it he's great my new consultant is an expert he listens and never rushes you if you think you have this don't give up and keep pushing for the correct diagnosis you know your own body a lot of the docs won't give the diagnosis without bad liver function tests because urso is so expensive but they monitor your liver function tests because they know your liver functions will eventually change I wish you good luck and I hope you haven't got pbc Wendy x

[bloomy in reply to Wendom]

Yes my sister is at that stage too. Thanks Wendy, will let you know how I get on with doctor on Monday

[Fudger126]

Hi Bloomy,

I was told at 24 that I had PBC with having the AMA antibody in my bloods, however 9 years on I do not have any symptoms and nothing much has change.

I had routine bloods done due to having really bad joint pain, it was so bad in my wrist and legs that I felt I could not hold my weight or hold a cup. However my GP told me I have Hypermobility Syndrom as well.

I ask the question myself all the time, do I have PBC???? As nothing has changed, I am at the hospital on the 25th March and I am now starting to get scared as I don't now what he is going to tell me, I always think the worst when my appointment is due. I don't Evan know what questions I am going to ask? I have also now found out that I have Osteities of the clavicle which is also a rare condition, I have been suffering with this for the past 9 months and due to pushing for a MRI this is the only why I have found out, my doctors just kept giving me painkillers.

Sorry for going on, I just wanted to let you know that I also found out by having the AMA in my bloods, and 9 years on no change, ( unless professor Neuberger ) tells me different on the 25th.

Wish you all well, take care

Carol

[Hidden in reply to Fudger126]

Hello Carol.

Well I think there could be a lot of us out and about in daily lives perhaps having PBC but never knowing about it. I sometimes think knowing you are supposed to have something (as you state you have no symptons of it) can make it prey on the mind that bit more.

You are fortunate that your bloods are still panning out normally and I hope that they always continue to do so. I think for you the heads up is that now you know you can endeavour to continue to try to keep yourself as healthy as possible.

Your PBC might have gone into what is known as a remissive state, a sort of suspension where it never progresses any further and may never resurface again as it can happen.

I've no idea how long I had PBC prior to starting with the itch in 2010. I had never really been to the GP surgery much and when I got my first script for urso Dec 2010 I'd not had a medication from the GP since 1999!

Are you on urso at all, just wondering. Seems normal if one has PBC diagnose but I've read on this site some have been informed they have PBC., their bloods are normal and they haven't been prescribed. So I then wondered if one had to reach a certain blood reading of abnormality/slight abnormality to be prescribed urso.

[Fudger126]

Hi Peridot,

Your right there is a lot of people out there not knowing that they have PBC, it is also very hard for people like me who get told that we do have it however feel well and have no symptoms, I like yourself never went to the doctors unless I am really bad, which is why I kept going back to see my GP with joint pains, until he took me serious and did blood test.

I am not on any medication, but I do see Professor Nueberger for check ups. I am just hoping that when I go in a few weeks he tells me that I still do not need medication.

[bloomy]

Well I have had all my tests done. At present AMA's are normal but ANA's are positive. Symptons are getting worse, itching, rash after showering, lumps under my skin. My doctor has been very good. She admits that she doesnt know much about the disease but would like to explore every situation regarding diagnosis. She is sending me for an ultrasound scan on my liver but at present hasn't prescribed or offered any treatment other than anti histamines for the itching and domperidone. Is there anything else I should be asking her to do?