Advice for someone who is getting angry please.

[cazz22]

I was diagnosed jan 2013(after findings of nodules on liver/pancreas)my bloods have never been high but they put me on urso last summer.to cut a long story short I am only on a reduced dose of450mg due to not tolerating it well however bloods almost back to normal.the consultant I saw in April said not to go back for six months and I can use any over the counter medication as I'm obviously ok at mo.what is annoying me is that I've found out my bloods CAN be normal but I could be at a late stage with Pbc and also I'm only seeing a gastroenterologist at doncaster hospital.surely with Pbc I should be referred to a liver specialist or is this not normal??feel like as there is no cure they are just patting me on head and telling me go away you're ok so far.can I be at a late stage with normalish blood results??

[2006]

I see a Gastro. In the USA. There is no cure for what we have. URSO is the only medication to help hold off the disease. I wish you luck. I have a Liver scan and blood work taken every 6 months. There is not much else they can do.

[mumofthree]

I was diagnosed with PBC in Jan 2011 following a liver biopsy. I live in Wales UK and have only ever been seen by a gastroenterologist. The first year I was seen 3 months after diagnosis, 6 months after that and since then on an annual basis.

[Lucylongstockings]

I feel much the same as you was diagnosed in January after a biopsy. I see a general gastroenterologist who seems to have little knowledge of pbc. I was prescribed urso told to take the full dose straight away and given no other instructions or explanation. I saw the gastro the other week, my bloods haven't changed really. She just wants to see me in a years time. I feel abandoned. I've tried to be referred to a liver specialist but no one seems to want to know. I feel abandoned. Like you say a pad in the head and off you go! The info from the pbc foundation is excellent. Contact them they ll send you a pack and DVD

[Denielle86 in reply to Lucylongstockings]

I feel very much the same way. My mitochondrial antibodies are high, so are my alkaline phosphates, and I have tons of symptoms. Headaches, itching, normal ultra sound, and most recently I started losing my hair! I read this can be from the alkaline phosphates being too high for too long. I go in for a ct scan today, so we shall see I suppose. I don't understand how they treat a PROGRESSIVE disease as if, "oh you're okay for now, we will deal with it ice it's worse"! Ridiculous and irresponsible in my opinion. Also, why is it that the only ppl really doing research on this disease and providing info are the ppl in the UK? We need a better system America!

[Tracylouise in reply to Denielle86]

Wow I've never heard of having alkaline phosphates high for long causing hair loss. Thats interesting!

[cazz22]

Thanks lucylongstockings.i have all info from foundation in fact I have info from all over .thats how I've found stuff out.my specialist didn't know that urso was available in tablet and suspension form when I couldn't take capsules!i had to tell him.the American Pbc sites say that you can be at stage four/chirrosis and have near normal bloods so how the heck can they tell you to come back )6/12months later?im annoyed that I was diagnosed because of nodules on liver/pancreas and it's me who is having to ask for scans and then chasing up results.i had another ultrasound last Xmas didn't hear anything until I went for my check up in April.when I asked for results the consultant looked embarrassed and said they had recommended MRI!if I hadn't asked I wouldn't have known.ive since had to phone up for MRI results.im so cross.i apprieciate there is little that can be done for Pbc but I'm damn sure that we could be treat better.sorry just on a rant day today

[spoul]

Make a formal complaint if your not happy it's the only way services get improved. I worked in the NHS and unless people speak up nothing changes

Good luck x

[FFC75]

I am under gastro (as it was via stomach bleeds that PBC was diagnosed) . I did ask for referral to liver specialist . Most gastro guys are up on PBC but not all. I too have nodes on my pancreas and an enlarged spleen . You do have the right to request a referral to liver spec if only for peace if mind. Good luck

[GrittyReads]

Have they explained what the nodules are, and has any action been taken about them? Or are they proposing to do anything about them? I have to admit I don't know what 'having nodules' is supposed to men in relation to PBC, but I have not heard it being commonly talked about by people, on here, with PBC. I would want a full explanation of those, as well as a clear plan of what they intend to do about them and a full explanation of the link to PBC. You have to ask - demand - that all of this be fully explained, until you are sure you understand. Get a friend or relative to become as clued up about PBC as you are, and take them along with you to all future meetings. Have all questions and points written down, so that you and the friend don't forget in the stress of the moment.

I am also assuming that you test positive for AMAs (antimitochondrial antibodies) as, along with abnormal liver function tests (lfts = blood tests), the presence of AMAs is one of the main diagnostic criteria for PBC. If not, and your lfts are not abnormal, I'm confused as to what the diagnosis of PBC is based on (but, as I've already said, I don't understand the significance of the nodules). What did the PBC Foundation say? Also, you don't mention whether you have symptoms of PBC.

Have you had the results of the MRI scan yet? Also, did the ultrasound show any damage to the bile ducts? And, did they offer a fibroscan and/or an MRCP scan? I don't know much about these last two, but they do seem to be increasingly offered to people who might have PBC, but whose blood tests are normal. Obviously there is also the possibility of a biopsy, but these tests are now usually offered first.

Go back and get answers to your questions, and demand more, and more tests until you are happy. Otherwise, try not to worry, and try to be good to yourself.

[teddybear7]

I was diagnosed march this year. On urso. Bloods OK. With gastro. Not to be seen again till December. & then every 6 to 12 months. Complained by letter. Got a lovely letter back but in essence all it says is. Until bloods change that's it. Listed all my other symptoms was told that all of them could be caused by other things!!!! So I take urso & wait. Thank goodness for the foundation I'd have been lost without them. X

[cazz22]

Yes thank goodness for foundation from me too.luckily my gastro has an unbelievably good secretary who goes more than the extra mile when I ring up.to answer gritty reads.yes I have had an AMA test done again at my request.i have the highest titre so again it points to Pbc.only my ggt was high.the highest it's been was 120 but now 60still a little high but not much.on Pbc websites in America it seems that nodules are quite common in Pbc-believe you me I have become somewhat of an expert on that one after thinking I had pancreatic cancer!i have little in the way of symptoms mostly aching feet and recently hips which my consultant refuses to believe is a symptom of Pbc.dont see consultant until end of October but my list of who what which and why is growing daily

[Jen11804]

Hi cazz 22

Just curious u never mentioned alkaline phosphate. Has this been high?? And if u r in late stage of pbc why r u not on a liver transplant list?? What or do u have symptoms??

Seems like they are not worried about it and r brushing u off?? Has your gastro had many pbc patients ??

I know for me my ggt is at 168 and my alkaline phosphate is 200. I'm presently on urso and have to get bloodwork done every 6 weeks I go back in October to c if the urso is lowering my enzymes if not they are going to take a biopsy to c the damage.

I've only had 2 visits with my gastro and he told me he has only had a total of 3 patients with pbc. One being in there 80's .

I was diagnosed this past June and I'm happy with him as he explained pbc to me seemed very knowledgable in that area.

I wish u good luck. Maybe it's the healthcare in the uk ( thsts where u r) ? Seems they c a lot more patients there than here in canada maybe they are a little more lienient because of that. Not saying it's right maybe it's just there state of mind and I woukd be asking for referrals as well

Good luck

[cazz22]

Hi Jen no only ggt high that's why I had origional scan where they discovered nodules.had to work hard convincing my doc I wasn't an alcoholic as apparently ggt is raised in drinkers.im t total.i have no idea what stage I'm at and to be fair I don't really want to know.as for symptoms the only thing I have is weight gain due to urso and painful feet but again been told this is not related to Pbc.think I will order a fact file from Pbc foundation and have it sent to doncaster hospital South Yorkshire.hope you keep well

[Hidden]

Hello cazz22.

Let's rewind here, your bloods were abnormal when you were diagnosed I presumed and you wre prescribed urso on being informed you had PBC.

Fast-forward to April this year and your bloods are 'almost back to normal'. The urso can help alter the bloods but at the same time by the additon of this urso it is helping our livers and the rest of our system cope with having PBC. It is true that PBC can continue to progress even on urso and your consultant at the hospital can be keyed up on the liver in general. I am certain that in the event things start to radically go downhill another option as in being referred to someone higher up as a doctor in that area only - usually an hepatologist - more than likely in a specialised liver dept of a hospital would be considered.

Doctors go off other things with PBC too as well as bloods, any other findings that are new symptons for eg and ultrasounds can actually tell a great deal and also how you are in yourself.

There is a scale that is used for liver patients (blood readings) and for instance if bilirubin was showing up in the blood.

In an ideal world we would all get to see a doctor who dealt with the liver area in a specialised unit but unfortunately here in the UK under the NHS it isn't possible and with PBC there is no real way of knowing at the start how it will progress. This starts coming with passing time. Even with liver damage someone with PBC can go on and live a pretty normal life even with the itch as I have had since 2010 and diagnosis. When someone with PBC does as can happen develop cirrhosis then that again can be a stage that can last a long long time also.

I only attneded the local hepatology dept of the hospital for 12mths (2010 to 2011) and then asked for a discharge as I wasn't feeling that I was going for every much that a GP couldn't do for me - bloods and asking how I was doing. I did get a discharge with the understanding that maybe one day I might need to go back. 3 years on I am still ticking on by and my bloods are much much better than they were back at the start of taking urso Dec 2010.

For me I choose to grab life and get on, I refuse to sit about and wonder about PBC more than I have to. I live with it every day due to itching at night mainly. If I didn't have the itch I'd not really think much about it at all. I also doubt had I not started with the itch I'd never have found myself seeing a GP.

[dianekjs]

Some gastroenterologists specialize in liver disease. Mine does and he's excellent. I also see a rheumatologist. Ursodiol can slow progression and sometimes normalize bloodwork. If your disease was progressing rapidly you would be showing other signs. I get an annual ultrasound and labs and am committed to as healthy a lifestyle as possible. Careful about requesting CTs if you can have ultrasound and/or MRI's. CT's use high doses of radiation compared to other tests, and many physicians now limit their use when possible.