Still confused!!

[Sandie1]

I am really in the dark about my PBC, everybody seems to know about their blood results ..., and what to look for, also what is varices? As I have said before I was diagnosed In May 2015, was given Urso and still waiting for treatment, only help I have had and explanation is with you guys , thankyou

[Hidden]

Hello Sandie1.

I decided to ask for my print out of the blood results as I was diagnosed as the consultant did a Vit D check and in his letter to me he stated that the Vit D was 'a b it low' and wasn't recommending supplements. I rang the secretary to ask her what this meant as in a figure and she kindly sent me all my blood results that were taken during 2010 pre-diagnosis and the ones just following. I then started requesting from the GP surgery but that is such an hassle to them it seems. I have to seemingly put on armour and go into battle every time and it is this that stresses me out more.

Usually with PBC there area few in the Liver Function Test (the LFTs or on my results it states just 'Liver profile') that are abnormal. They have come down since 2010 when they were rising during the year pre-diagnosis. There are a few that are said to be a good indicator of progressing PBC, one is the bilirubin, forgets the others. There seems to be some different scale for PBC as we are expected to be abnormal with the readings but OK (I have always had this since the first check after starting urso Dec 2010) but some do have a return to normal blood readings on urso.

I have had a couple in the Full Blood Count (FBC) that have been slightly abnormal over the years but for the first time my recent ones showed just the lymphocyte (type of white blood cell) that was slightly under normal range but it has all along. Others that had showed up previously slightly abnormal are within the normal range now.

There is also the GGT blood that is normally taken with PBC. This is apparently supposed to be some indiciation of liver inflammation and expected to be abnormal. Mine still is but said to be OK.

There are ascites and varices that we can get, one is to do with enlargement of some sort and the other is where we can gather fluid. I've only ever had a scan so I couldn't comment there. You can read about these in the PBC Foundation file that is also online if you made yourself a member you can read it there.

The only treatment we tend to get in the early days of PBC is the urso. Other things get treated as and when they occur if they do.

I did attend outpatients following diagnosis for 12mths and just had the standard consultant chat about the last bloods, had bloods taken and then was sent on my way. So much so that given my LFTs were dropping and I only have the itch (still do) I aasked to be discharged. Consultant and I had a brief chat, he agreed and said in future if needs arise I'd be referred back. That was 4yrs ago.

If you've not already done so, request a free copy of the dvd on PBC from LIver North, it is informative (I didn't watch all, my husband did) as that covers a few things. I did originally read up on PBC but then decided I'd switch off and deal with things as and when as these things might never occur so needless worry meanwhile. I try to get on with enjoying life as never know and I am almost 52.

livernorth.org.uk/

[chynablue]

Hi Sandie,

Here's a couple resources that might help out:

The PBC foundation has a website with a lot of information

pbcfoundation.org.uk/

Are you a member? It's free to join and then you get access to their Compendium, which explains pretty much everything you might want to know. You can also call and chat with the staff members there.

Here is a good website where you can learn a little more about blood tests:

labtestsonline.org.uk/under...

Click on the name of the test and it goes into further information about what it means. You can also use the search box to find out more about particular blood tests.

Varices are dialated blood vessels. Normally, blood is free flowing in the vessels, but when blood travels to the liver it can meet some resistance if the fibrosis and scar tissue in the liver gets in the way. This causes the blood pressure in these vessels to increase and sometimes the blood backs up like a traffic jam. Varices need to be monitored because they can bleed sometimes. Sometimes they call it portal vein hypertension.

I hope this helps a bit!

[cazer]

Hi sandie try not to worry to much the bloods being a bit abnormal is quite usual for pbc tje urso will probably improve some anywY but will take a bit of time to help.urso is the main treatment for pbc so dont worry that nothing else is happeming...they may do a bone scan at some ppint and ultrasounds but if you are early with hardly any symptoms you may not need either as yet.did u say you have a consultant if not u could ask to see ome .tjen go armed with all yoir questioms.if your doc wont refer you then contact pbc society ask for folder theywill fill you in but dont scare yoirself silly as you may never progress much.lm 17yrs on ...yes i have fatigue and have other symptoms ..

Varices and p.h.tension but i was already sporting a partly scarred liver when first diagnosed so as you can it really can be that you can b witjout and major probs and may not get them.they are only now sayimg now that i may go forward for assesssment and my bloods have been abnormal all.tjis time.do u have any symptoms?xcazer

[teddybear7]

You don't get any real help from medics in my opinion. I say this on here time & time again. Join the PBC foundation as a member. You then have access to they're compendium it has in it all you need to know. & if you still have more questions then they are at the end of the phone to help. They have been my godsend. X

[Dese]

Hiya. I'm new at this PBC thing as well I don't have a clue what it all means didn't even know there was an illness called PBC. I can't even say the Properly lol. I'm going back to hospital April to see if the tablets are working I think il take my daughters with me and between the two of them I'm hoping I will understand it more. You will get some good response on here they are really good or call the PBC foundation. Good luck.