Bloodwork?

[Jaycee]

Hi All. I was wondering if anyone can tell me what my numbers are supposed to be, I have recently been told I have varices and am seeing my Gastro next week I don't know what questions I should be asking, I have had PBC for a lot of years but kind of ignored it as I seem to be asymptomatic so havn't bothered about it too much, but I believe varices are a progression so it's time I took control of this, I have only ever had 1 biopsy, I don't take Urso, and was never offered anything else, so if anyone can tell me what the bloodwork should be I would be grateful, Thanks in advance.

[Ballymahon2]

I just wonder why you dont take urso

[Jaycee in reply to Ballymahon2]

It made me very ill.

[Ballymahon2 in reply to Jaycee]

I know there are other medications ocaliva is the one used if you cant take urso i do think you should see a hepatologist

[butterflyEi]

Hi Jaycee

Like you I have only had one biopsy and was asymptomatic at the time of diagnosis in 2006.

It is only of more recent times that an alternative to URSO has become available in the guise of Obetacholic Acid (Ocaliva) but over the different forum people also report the use of Bezafibrate and there has been some chatter that anti depressants also have a beneficial impact on blood results but there is no known reason as to why.

I have taken the following from the PBC Foundation's web site which you may find helpful

How can your PBC be monitored?

PBC is diagnosed using a range of techniques which you may be already familiar with, including:

Antimitochondrial Antibody (AMA) tests

Blood tests - these may include liver biochemistry tests (commonly referred to as liver function tests or LFTs)

Liver biopsy

Liver tests, e.g Alk Phos or Bilirubin, track the health of your liver and the processes occurring within it. These tests are a key component of PBC diagnosis and may also be used by your doctor to monitor any changes in your disease.

What are your numbers?

Important PBC markers that are monitored by LFTs include alkaline phosphatase (ALP), bilirubin and albumin. A change in the levels of these three markers can highlight potential risk of disease progression.

also here is a link to a very useful fact sheet from the Canadian PBC Society which gives a good breakdown but of course the values will vary from country to country and also between different laboratories.

pbc-society.ca/images/blood...

If you need anything more in depth you may want to speak to the PBC Foundation directly who are in Scotland.

On a personal note, there are no real recommendations made about diet but I have found it helpful to move to a more vegetable based diet, cutting out all fizzy drinks like coca cola, reducing salt and sugar in my diet, some find cutting out gluten or dairy make a difference, over the last 2-3 years I decided to get my weight under control and cut out bread, rice and pasta and having lost over 20 kilos I now have smaller amounts of starchy foods back into the diet.

Hopefully the above will help you at your Gastro appointment next week.

best wishes

[Biddyb]

Hope this helps

Bilirubin 0-21

Alk Phos 30-130

Alt 0-40

These are the levels my consultant requires I get my GP to print off results so that I can take them to my consultant also I like to keep them for reference

[kimphoebe]

Hi there

Can I ask how often to you go to clinic and get bloods checked. There is a criteria which should be followed when been dx with pbc. Have you ever had a fibroscan

[Jaycee in reply to kimphoebe]

Hi There, Firstly, I have never had a Fibroscan, should I ask for one? Secondly, I have regular blood tests, but GP never really discusses them, as I said in my original post, that's my fault as I largely ignored it, but need to take control now, not seen a Consultant for a couple of years, no one seems to bother, Am seeing a Gastro on 7th November, so I'll have some questions ready for him this time. Thanks for your reply.

[Ballymahon2 in reply to Jaycee]

You should get a fibroscan i get one done every 2 years

[kimphoebe]

Firstly you need to see a Hepatologist not a gastroenterologist who specialises in pbc. Don’t know which part of the country you are in but I go to Birmingham and I live in South Wales. Don’t let your gp take control of your pbc it’s time you took control now. Ask for copies of all your blood results and then you can see what’s been going on. Can’t believe your gp as let it go this far.

Any help just ask someone here is always got some experience.

[Biddyb in reply to kimphoebe]

Spot on advice exactly what I was going to put

[ENuk]

How was the varices detected and who has diagnosed these?

A fibroscan would certainly be helpful but they may also what to have a biopsy.