Please do not think I am being a drama queen. So quick back story my nan had PBC and sadly passed in 2001,my mum was diagnosed in 2016 so mum's specialist has advised I have regular liver function blood tests. So I have been having them done every year to 18mths had one done yesterday and the nurse phoned me today to say I have borderline readings and I need to go back in 4 weeks and be retested . I feel so silly I didn't ask any questions I was in shock For a few minutes. Does anyone have a idea borderline result is borderline in what ? Should I change my diet now or wait. Sorry to ask you. didn't want to bother my mum I have been pushing her to enjoy her life and do what ever takes her fancy so she's in Thailand for 3 months (go mum 😁) I do not want to worry her and I could possibly have it all wrong. Did try to phone the doctors back but I had missed the nurse so it will be Monday now.
Take care everyone x
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Sammyxxx
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Sammy, The worst you could do is to project, it will get you all kinds of trouble. There are several reasons numbers could be elevate. Wait, but mean while go about your normal life.
Thank you it's not like me to get in a panic I'm glass is half fall thinking. I am just more cross with myself for not asking about why I could have that sort of reading. Definitely going to change my diet anyway. I have been very lazy with eating. And I'm normally on at my mum and my boys to eat better . Yes definitely back to normal life.
I dont think diet has anything to do with pbc my hepatologist told me to eat anything i want just limit alcohol intake well i decided to cut out alcohol coz its hard on the liver keep an eye on your lfts and discuss your results with your physician good luck
Will do i will ring back on Monday. Might even just wait till the first of March when I have the check up blood test. Definitely no booze for me I do not drink a often but when I do i do have a far bit.
Sammy, the fatigue is part of this disease, isn’t horrible? Does help to exercise or walk daily or as much as you can. Diet and hydration is BIG, along with plenty rest (try turning little earlier at night) you’ll feel better the following day, and naps are great.
Don’t be upset with yourself regarding labs, maybe you were a little anxious and just forgot, no worries.
I always say “couple day before appointment start a list of questions and most important, don’t let Physicain get away until he has satisfied all you questions” .
Do you already test positive for AMAs (AMA-M2, = antimitochodrial antibodies)?
You would usually need to have AMAs, as well as, liver function tests (lfts) that are abnormal in a manner that is typical of PBC.
You cannot be diagnosed, just, on abnormal lfts.
Plus, if you don't have AMAs, but your lfts are abnormal - in a manner typical of PBC [eg high ALP (and/or) GGT/ALT.ASP] - then you would need a biopsy to absolutely confirm PBC.
The diagnosis of PBC requires 2 positive separate positive tests:
AMAs … and/or ... abnormal lfts ... and/or … a biopsy that shows damage - to the microscopic biliary tubules of the liver - that is typical of PBC.
That does help thank you I have been so use to my bloods coming back fine this just came a bit of a shock. And yesterday I panicked today I have been for a lovely long cold walk 😁. Took notice of other posts and I will just carry on with life. The next retest is in 4 weeks time so I am sure they will explain more and as to why I had a borderline reading.
Okay, that's good. I was worried that your medics were not following best practice. However, if no one has talked about AMAs, do ask about the test.
Also, do check in at the website of the 'PBC Foundation' (phone or email) who 'host' this site on 'Health Unlocked - see link further up on right 'All things PBC foundation'.
They are all lovely, the trained advisors will talk you through all your worries and their website is a marvel of up-to-the minute info. Plus, they work alongside all the leading PBC Specialists in the UK - who often write in their magazine 'Bear Facts' (3 a year if you join). It's free to join, and includes full access to the whole website, where there is the latest official document on the officially recognised protocol for the diagnosis of PBC: - which should be known and followed by all medics investigating possible cases of PBC.
So, do take care … and try not to worry! Easier said than done, but stress is always 'the worst' for anyone with, or at risk of, autoimmune conditions. So ... more lovely walks, and do lots of the things you love and that make you feel happy!!
Am I on the American forum I'm in the UK ?. I will definitely ask AMAs. I do read a lot of sites on PBC just to see how people are coping there storys, different foods and drinks ,how they cope with being tired, the itching. Then I pass it on to mum, her specialist gave her 3 years then down hill from there. I think she's taken that as the truth she has even started smoking after quiting for over 10years. Her fight has gone a bit. Think that's why I pushed her to go back to Thailand. She needs to have fun and sort her self out a bit. Plus I was getting very stressed (she lives with me and my boys had the garage converted for her) so fingers crossed she comes back smoke free and positive. She also took her self off the care of her specialist so hopefully I can get her going back for her check ups. Thank you so much for the advice and help.
No, as far as I know 'Health Unlocked' (the overall site, with lots of different health-related groups/sites on it) is either a UK site, or maybe worldwide - although when I came on it was mainly UK people.
I meant the 'PBC Foundation' is UK-based, so their site will only, really detail 'practice' in the UK as well as liaising with UK PBC Consultants. They are based in Scotland, and most members of the PBC F are in the UK.
That sounds quite unusual about your mum. Most people who are diagnosed with PBC can - with the correct medication - go on to live pretty long and full lives. These days, for most people, the diagnosis is the first step in good treatment, and thus improved and prolonged lives. Of course, it can depend on how long she had had it before it was diagnosed, but nowadays most people with PBC die of old age or other illnesses, rather than PBC, as the correct medication can help so much.
Talk to the 'PBC Foundation' advisors: they are lovely, helpful, caring and know all the correct, up-to- minute, practice to be followed by specialists, GPs and patients.
If her GP is at fault, or the liver specialist (whoever) that she saw, then she needs to see someone who knows their stuff.
FBC foundation are brilliant they helped no end when mum was first diagnosed she would not join so I messaged them and explained I do not have it but mum does and they where amazing gave me loads of advice.
She's had it years for at least 7years they thought it was her bowels, the amount of different things they where testing her for we thought she had cancer at one point. But her GP started thinking out the box and sent her for a different blood tests then refured her to the liver specialist at Peterborough and she was properly diagnosed. I don't want to sound harsh towards my mum but she's changed the last year her marriage broke down after 30 years to my step dad she took herself off the specialist, and seems to of given up a bit I think the 3 years comment was properly not how the specialist said it think its how mum took it in her frame of mind at the time. I do understand she is fed up. So fingers crossed when she gets back from her jollys she is ready to fight. She said she is eating better the warmth is doing her good she's just not sleeping great and in a fare bit of pain and she said she's gone yellowish again but this has happened on and off . But did find out she is still on her medication and is taking cider vinger too so it's good. I just didn't want to tell her about my blood test didn't want her to worry. And now I'm not confused and in panic mode I don't see the point.
don't panic... it means that you are borderline between normal and abnormal... literally on the divide... thimgs like viruses, colds etc can upset readings... so hence leaving it 4 weeks and rechecking... it may have improved on its own...
sounds like you are being well looked after... you mentioned diet... a healthy diet will do no harm so if that's what you meant it will certainly do no harm.. best wishes cazer.
Oh my god it was like you was sent from the gods. Thank you so much you have told me exactly what I was wondering about. Why I didnt ask the nurse to explain more I don't know 😂.
I have been really lazy with eating healthy and keeping fit for about 6 months this has given me the boot up the bum to get back on track. Even went out in the snow (dusting) and did 10k walk this morning even the dog was moaning 😂. Thank you
but before that I had pbc for 19years.. but your bloods will go up and down so don't take too much notice of it all as it will fluctuate a lot.. best wishes cazer x
I am post transplant too!!! almost 19 years.. good for us!! you are so right to remind her about fluctuations. Any increase in those numbers can be scary, I know. Hope you are doing well.
That is wonderful how are you feeling. I am so pleased for you. Iam definitely going to tell mum. How long have you had your new liver. Do they have a age cut off for a transplant? What age was you when you found out so sorry for the questions. X
First of all , I know how scary this must be for you in view of your Mom. Sorry to hear this... try not to panic until you know what your numbers are. Stress or any type of illness can cause increases as well. Try to just wait and find out the facts.
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