what test results do i ask for?

Hi Everyone, i have PBS with AIH and cirrhosis and am trying to find out as much as i can about what this actually means for me, unfortunately my next appointment at the hospital is not for another 2 months and it is really worrying me that i would have to wait that long to get some specific answers so i am going to my GP tomorrow to speak to him about the meds and ask for the results of my previous bloods etc from the begining, i am guessing the GP would have been sent copies from all the tests i have had??

so my question is what do i specifically need to be asking my GP to be in the best possible position to start finding some answers?

thank you all for your help

4 Replies

  • Just checking the diagnosis - AIH is a clear abbreviation, but the other, well there are few starting with P

    PBC primary biliary cholangitis

    PSC primary sclerosing cholangitis

    so i wont comment on those just in case i get the wrong one.

    At this early stage of the AIH, you are, i think, just on steroids for it. So i guess the docs will want to see if your LFT results have improved. If you're not sure what all the tests are and what they mean, there is a leaflet on the British Liver Trust website you can download for free here britishlivertrust.org.uk/li...

    Check through that, and then match up the tests your docs have either taken, or plan to take, and you might get a window into what they are looking for.

    I know you have been treated/monitored for PBC for a while, taking Urso. What tests have you had during that 18 months by your GP, and what by the consultant, can you remember. Now is the time to start asking for copies, so you can keep tabs on who is testing for what and what the results are.

    For the possible AIH they will be looking to see how you are responding to the steroids I guess.

    Your GP wont be a specialist in either AIH or 'the other P one', so don't expect them to have the answers. Some never see a case of AIH in their practising history. Its the specialist you go to who will be in charge of your overall treatment plan, drug prescribing (though the GP can follow his/her instructions they should not alter your meds or treatment plan without consulting the specialist first) and monitoring.

    Take a list of questions with you (my mind goes blank the minute i'm called into the consulting room) and make a written note of the answers. Take a realistic list of questions, GPs only have 10 minutes!

    If you feel you need some authorised time off sick, ask for it. Your employer should still pay you and it may give you breathing space to get adjusted to this and get used to the medication. Check what the GP writes on the sick note, mine is good and avoids the word 'hepatitis' as it can carry stigma with it if people dont understand that autoimmune variants are not the viral kind. Mine writes 'autoimmune liver disease' or similar, if i ask them to.

  • thank you Bolly that is again a big help.

    sorry for the typo, the diagnosis is PBC primary biliary cholangitis !

    yes i have been on urso for the last 18 months and had numerous bloods, scans and most recently liver biopsy, so im guessing / hoping he would have been notified each time of the actual results? which is what i really want to know so that i am in the best possible position to actually have some constructive questions to ask the specialist in may.

    that way i can get some meaningful answers that will give me some idea of what they are thinking because yes when the doc asks me if i have any questions all i get is tumbleweed and end up coming out not really knowing what is or has happened :)

    i am speaking to the doc tomorrow because having the sick note say something that people dont understand could be taken the wrong way and it may be a good idea to have a bit of time off to get things right in my head.

  • My GP has some clever software that seems to be able to merge a few months worth of blood results and print them off in a sort of spreadsheet. Might be worth asking if they can do something similar. You could ask for copies of any letters between your GP and the consultant. Also any written reports from the biopsy or imaging. Doubt they would have actual images, and anyway they are difficult things to interpret unless you are trained.

    If it's a lot of stuff they may make a charge.

    Ah yes, the tumbleweed scenario. I'm so knowledgable before I go, then totally blank after I have sat in the waiting room getting nervous. Then full of questions once I get home again. Take a notepad, or better still another person!

    As PBC is your first diagnosis and the AIH perhaps not yet definite, something like "ongoing investigations into bile duct damage" rather than "cirrhosis" (people assume alcohol) or "hepatitis" (people assume Hep C). Whatever your GP suggests.

  • i will ask for as much as he has and see what happens, i will definitely be taking someone with me.

    yes diagnosed with PBC and the recent bloods and biopsy confirmed AIH overlap with established cirrhosis, the thing that i think is bad is that i found out by receiving a letter in the post from my consultant to my GP explaining he wanted him to put me on more meds and would see me in 3 months time, so the diagnosis was a shock in the first place let alone the inability to speak to the specialist that can actually answer any questions for me, i just think it makes dealing with the news a whole lot harder if you cant ask what it all means, so another visit to the GP it is :)

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