What question should I be asking? Very confused

[Wispa123]

Am very confused. Was found to have PBC during blood tests which found I also have POlymyalgia rheumatica. At present am being treated for POlymyalgia with steroids and calcium magnesium, plus a few supplements. Was sent to liver consultant who just said annual test needed, that I am asymptoma tic and I would most likely die with it rather than because of it. Think I had so much to get my head round I didn't ask questions, now I have loads. At present am just trying to get sorted with the POlymyalgia which hopefully will only be for short term ( like 18 months or so) but should I be chasing up more detail re PBC and where is best place to get advice on diet etc. am confused and worried.

Have to do blood tests in 3 weeks timefor POlymyalgia so am planning list of questions re PBC for my gp at next appointment any suggestions?

[teddybear7]

I found most of

What I needed to know from the foundation. If your not showing any symptoms at all then annual is probably right. I'm showing symptoms and annual with blood tests. Mine aren't very good at answering questions. So I put it in a letter & sent it by post in the end. Got a black & white answer I can refer to.

[Hidden]

Hello Wispa123.

Had to read your posting twice as I thought at first you might have posted on a wrong site. But then I noticed you have stated you do have PBC. Apologies if I have responded to you before on other posts.

I think if you are having bloods for POlymalgia (I've never heard of) then it could well be that some contain certain ones that we have for PBC. The ones we have in PBC, most are quite routine - the LFTs and the FBC (Liver Function Test is used to check other things in patients without a liver problem as is the Full Blood Count) - and if so anything would be taken into consideration like current conditions.

If you are asymptomatic it does seem that it can be quite normal for bloods to be taken for PBC at 1w2 monthly intervals. I expect in the event that you do start to feel you may be developing any symptons that can come with PBC you'd appraoch your doctor for advice anyway.

I was diagnosed with PBC Dec 2010 and at the time had symptons of PBC (itching and fatigue. I only h ave itching at night these days) and abnormal LFTs so that is why I had slightly more frequent bloods in the early days - every 3 months - and in the last 18mths now I'll have had them at 6 monthly intervals. I am still symptomatic and also my bloods are still abnormal but not overly-so these days.

The only thing you can really do once you have diagnosed PBC is to attempt to look after yourself even more than you thought you did prior to diagnosis. Certain things like alcohol for instance is common sense. It's not said we can't drink with PBC if we are not at a crucial stage but a lot like myself just choose not to bother again. (I was never much of a drinker pre-2010 and I choose not to partake - though I did have a thimbleful of whisky in a cup of tea over the festive period when it was a very cold day and I did feel cold as I live in a rather old, draughty and cold home.)

I try not to eat foods that contain MSG and also I have always tried to avoid the artificial sweeteners myself as to me no idea what they are actually doing to the body but at the same time I'd rather opt for the natural sugar route. I try to cook majority of my meals from scratch, even bake a cake/buns so I know what is in them.

I did find a few websites back in 2010 and hoped I'd not need to look more as I hoped I hadn't got PBC.

One where you can actually request a free dvd all about PBC is Liver North. They are in Newcastle. I got a copy back in 2011. You can also read their newsletters online. I noticed with this charity they feature a lot on PBC. There is also PBC Foundation where if you make yourself a member you can see their binder online (though they do tend to send you one as I got one a few years ago). There is the British Liver Trust but quite frankly I find they irritate me somewhat as they never seem to stress that there are other factors for certain people developing a liver disorder and not just through misuse of alcohol or illegal substances for eg. I'll post the links below. If you are not in the UK but I suspect you are somehow, there is PBCers org in the US. They are online too.

livernorth.org.uk/

[GrittyReads]

I would talk to the PBC foundation people. There is a link to their site at the top of this page: they are the organisation that host this 'PBC' site on 'Health Unlocked'.

If you check the site you can get phone numbers to talk to their advisors. Also, if you join the group, you will receive a folder that covers most common aspects of PBC, and living with it. Much of the stuff online about PBC is too simplistic, or dated, or overly scary, or too advanced at first !

You need to start asking exactly what they are testing for, and why, and what are they doing - exactly in order to get the info. It helps to be proactive about PBC as many GPs and even some more general consultants are not up to speed.

To be diagnosed with PBC you need to have at least 2 out of 3 of the main clinical diagnostic criteria.

That is:

1) Test +ve for antimitochondrial antibodies. And/ or:

2) Have abnormal liver function tests for over a period of about 6 months: LFTs involve testing about 6 or more chemicals that the liver deals with, as if the liver isn't functioning perfectly than some of the chemical levels go a little off). And /Or:

3) Have a liver biopsy that shows damage to the bile ducts of the liver.

Usually 1) and 2) are enough for a diagnosis of PBC, especially if you have symptoms as well (eg itching and fatigue, although there are others). A biopsy is usually given only if there is doubt about 1) and 2), or if there could be other things going on.

If they've done 'blood tests' that could be 1) and 2), or just one of them. If they are only planning on doing annual lfts, and have not offered you any prescription medicine, then it's likely that you only test +ve for AMAs. But you need to check that, as if your lfts were slightly adrift, then they should be following that up with more blood tests, and possibly offering you medicine.

Strictly speaking, only having AMAs is not enough for a formal diagnosis of PBC, as far more of the population test +ve for AMAs than the % that ever go on to develop PBC.

Simply, it's not fair to be 'labelled' as having PBC if you only have AMAs, ..... BUT, it depends on other things: do you have symptoms; have they done an ultrasound of your liver, have they offered other tests, or are the sub-type of AMAs relevant to other conditions?

I hate to say it, but you need to learn as much as you can about PBC, and then ask questions, demand answers and discuss all outcomes, results and options. It also helps if you have a leading PBC consultant treating you!

I hope you get some answers, and that it all goes well

[Wispa123]

Thanks to both gritty reads and peridot it's become clear I need to be active in this investigation so thanks for all the pointers I will follow them up and be armed with list once I get back to Gp.