Need to know about test results

[Jan1111]

Hi everyone I have had BPC for about 5 years now, on Urso but I don't know what a I should be asking about my blood results and levels should be. I did not know there are stages. I have an appointment with specialist in 2 weeks and would love to know what I should be asking, any help or advice would be much appreciated x

[Ballymahon2]

Get a copy of your blood results and ask specialist to go through them with you

[Jan1111 in reply to Ballymahon2]

Thankyou😊

[Hidden]

Jan1111, have you joined the pbc foundation if not I would suggest you join the link is on this page. They have upto date information about pbc.

I would give them a call before your appointment they will be able to help you get the best from your appointment time. If you have a copy of your bloods that will help.

As I found out myself this week it’s useful to know what your baseline numbers when you were diagnosed, so I would ask for those, then you can reference against those you have done now and in the future.

I never had my baseline numbers I was diagnosed 8 years ago but my consultant went over them with me this week in regards to where I am now, I was so surprised that my baseline ALP was only 268.

Let us know how you get on, I put a link to the EASL guidelines which is useful to read and gives you some example questions.

pbcfoundation.org.uk/upload...

[Jan1111 in reply to Hidden]

Really grateful for your advice 😊

[butterflyEi]

Hi Jan1111

If you have had your blood test done ready for the appointment in 2 weeks your surgery may be able to give you a copy in advance of the appointment. In The PBC Foundation's compendium you can find how PBC is diagnosed on page 14. It gives information about the blood tests needed and the main blood results to look out for. You ask about stages - it would seem here in the UK they do not stage the disease but they do in the USA and possibly other countries.

As PBC comes more to the minds of the medical profession more specialists have better knowledge however I still find it much depends on the specialist and their attitude how they present themselves to the patient. As Hidden has said EASL now recommends guidelines which may help you to manage your appointment and these can be found

easl.eu/medias/cpg/Primary%...

I went for 5 years without specialist management until I had the so called itch of PBC drive me mad so when I eventually got to see the specialist all my questions revolved around medication and control of the itch. However having found a pleasant young man he scheduled a Dexascan which measures bone density this is handy to get a marker for future reference relative to osteopenia/osteoporosis. I had an endoscopy (which I found unpleasant but not painful) which found gallstones and hiatus hernia but nothing else untoward. When I get my blood results I look at the bilirubin, alkaline phosphatase, serum ALT and serum C reactive protein. All mine come back raised but nothing to worry about.

The main thing is how are you feeling, do you have any points that you want to raise about your body. Are you taking any vitamins? If you are let the specialist know and if not depending on diet age and how long you have had PBC you may want to ask if you would benefit from vitamins A D E & K which are known to be difficult for us to store in PBC. This was recently discussed in a round table discussion on You Tube

youtube.com/watch?v=m7TyrhQ...(Not working as expected?)

This video although from America is also relevant to us here in the UK where they also talk about blood tests.

I hope some of the above will help you research your needs before your appointment. As most will say it is good to write down the questions so that you have some control of the appointment.

Come back to us and let us know how you get on.

best wishes

[Jan1111 in reply to butterflyEi]

Thank you so much for your help and advice , I know so much more now and will be able to ask questions now😊