I went to see my consultant today and I asked him about this stageing that you all talk about, he looked quite blank until I explained that the biopsy should have given a stage, he said all the biopsy report said was that I have severe PBC, that is news to me as I was just told I had PBC and not severe PBC, he did appologise for this.
Answeres to other questions I asked where that my AMA was elevated and my bloods have gone down fron over 2000 to 500, I don't know what any of this means and I am now more confused and worried than before, he also is insistant that he sends me to the bone unit again for my oeseoporosis saying but they can put you on a different treatment that alendronic acid, I don't want any treatment from the bone unit. I want to know whats going on with my liver!!!!
Linda, after the holiday weekend call the PBC Foundation and talk to them about this as this isn't something that can be answered on line like this. They will be able to explain everything to you and advise you on questions to ask your consultant so you understand everything. You have to remember that the docs just don't have all the answers - that;s the nature of PBC. The liver affects your bone density and its important that you get support for your bones as well as the support you as a person obviously need. The Foundation and its volunteers can give you that support.
I am of course no expert, but I will answer the staging question the way i was told.....
The 'staging' that people talk about is not something recognised by all specialists. It seems it just isnt that useful to know.
My consultant first told me that in the UK staging wasnt done but if i wanted to know what stage it was 3. Staging is basially an observation of the cells from biopsy under microscope.
From what i copied years ago after i had my biopsy done,
stage 1 = inflamation of the portal tracts and billiary ducts
stage 2 = Destruction of some of the bile ducts and inflammation
that has spread to liver cells.
Stage3= Fibrosis (or scarring) which has spread to the portal
tracts, bile ducts and liver cells.
stage 4 = Chirrosis.
From what i was told, you can actually have more than one stage present at one time... ie you you can have some fibrosis, but some bile ducts might only be slightly afected, but you would still be in stage 3.
I think the reason a lot of our doctors do not like staging is that there is no definitive time line of progression of PBC, you can be in stage one or any other stage for ever and die of old age or you could be diagnosed in early stages then progress very quickly to liver failure. I believe the treatment is the same what everstage you are in (apart maybe from end stage liver failure) Also many top liver specialists dont actually do Biopsy anymore.
As for your blood tests, only your docs can tell you what they mean for you, 'raised bloods' doesnt really mean anything as liver function tests encompass many different tests, and each test looks at different chemicals and enzymes etc... and many of the tests can fluctuate wildly in different circumastance so should only be read as an ongoing picture.
The best bit of advice given to me, was to write every question down as it comes to you and then take them into your next consultation. You are partly in charge of your treatement alongside your doctor so have the right to know what is happening to you. As others have said each of us is different so comparing 'blood levels' or stages is irrelevent really.
I am glad you asked this questions, I learned a few things as well. I do know that unless your doctor asks for the biopsy to be staged, it might not be. My first one wasn't (because they were getting conformation), so when I needed the second one done, asked my doctor to have it staged. I don't think they like to look at the staging as much as we do. My doctor told me it was a good guideline to go off of, but not so accurate. My MRI is what he went off more, it shows everything, the biopsy only shows a small area of the liver. It could be an area that is less effected, so not so reliable. You can request copies of all your tests from your doctor to keep. I get them from my GP (not my specialist). Also I should add, not all specialist are familiar with PBC, though they probably touched on the disease in their schooling. I have two specialists, the one in town has over the passed 7 years studied up on it and gotten better at answering my questions, but still got me in touch with a doctor that will do my transplant. He has always told me that since my other specialist does studies in this field, that I should go with what he says first (if their info is different). Just hang in their and don't give up on your doctor, most like the challenge of something new, so you might find he becomes more educated and helpful with PBC.
Hi I think we all have different approaches to how much we want to know. In my case I want to know everything they do, so I have asked to be copied in on all correspondence and test results and I find this reassuring in a kind of way as I know where I am with all this. My specialist has a graph on his computer which he shows me each time I go so it is easy to see how Im doing on URSO and what difference it is making, I think he understands my need to know. I did get a biopsy and a staging when I was first disgnosed, I think they took 3x plugs to get a better idea of the overall state. I tell my consultant that even if they cant do anything about my symptoms I still want him to explain why they are happening to me.
If you are not seeing your consultant for a while ask your GP for all your results and communications with your consultant. They are legally obliged to give this to you but may make a small admin charge.
I am the kind of person who likes to look PBC right between the eyes 00.
You sound like my kind of girl!!! I too like to know the ins and outs and this is where it frustrates me when my specialist thinks I am getting obsessive with the numbers. I like the idea of the graph. I need to see the numbers to see that I am on the right track and can compartmentalise that in my brain and move on with my life. I don't think that is too much to ask. Although, I think he thinks I ask too many questions!! My husband even joked with him that it would be easier if he just copied me in on the emails! lol!
I visit my doctor every 6 weeks (his request for the first year) and the consultant every 2 months. I now get my bloods taken at the doctors a week before I go to see the consultant which means the consultant has the bloods at the consultation, which makes more sense. x
@SLWB.... it is not the doctor that asks for the biopsy to be staged... when a biopsy is carried out, the doc just removes a sample of cells. When these cells are examned under a microscope the doctors / haematologist or whomever looks at the slides can see changes in the cells.... the severity of damage in the cells, and where the cells are from is what tells the doctors how badly damaged the liver is... ie what stage of the disease you are at.... there is not a seperate test or procedure for staging... or a different way of looking at it.... it's just that many doctors do not use the staging in the UK whereas in the USA it seems quite common place.
In the Uk, it doesn't matter where you get your blood results from, mostGP's can now access the hospital framwork so they can read your tests directly from the hospital and the hospital docs read GP tests too. Some of us may only see the GP. Some only ever see a specialist. I see my specialist every 8-10 weeks have done for years. I rarely see my GP about my PBC or AIH but she gets all the correspondnce from my consultant.
You are right about not all specialists being experts in PBC, but I personally wouldnt be happy with seeing either a gastroenterologist or hepatologist who knew very little about PBC as they are the ones who make decisions not only about my PBC / AIH but also advise other specialists about treatments that won't be bad for me, when i have something else go wrong. In the UK, we have the right to ask for a second opinion and mostly we can transfer into the care of another consultant who has better knowledge of our condition.
That is good to know. I have my specialist that takes care of the PBC in Edmonton, my specialist in my home town takes care of all the other test that are needed, so I don't have to go into Edmonton all the time for everything. I am lucky to have the doctor I have in Edmonton, he is doing research on PBC. I just know that not everyone is lucky enough to have a specialist with all the knowledge close by. You are in the UK? I'm in Canada.
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PBC/AIH, early stage of fibrosis confused.
False positive AMA test result?
PBC/AIH overlap
Getting diagnosed with new things all the time = scary!!!
