First post

[Gillian61]

Hello everyone, I was diagnosed 2 weeks ago and are still struggling to understand PBC. I have yellowish skin and no other symptoms and are wondering if it could be a mistake. I had been to a party 3 days before and had far too much to drink and was wondering if that could have given a false reading? Gill

[Ktltel]

Gillian61,

I'm sorry about your new diagnoses. It is a shock and takes a little bit to wrap your head around. But you will. It's gonna be OK. The good news is you found this forum. We've all been where you are at one time. Take a deep breath and educate yourself.

Join the PBC foundation above and equip yourself with information. Since you've just been diagnosed they must have found your liver enzymes elevated. In particular your AMA-M2 and maybe a few others. Is that right?

Did they start you on medication? Ursodiol? I can't answer your question about drinking too much Beforehand and if this could give a false positive on your PBC diagnosis. I've never heard that before. It's an excellent question to ask your doctor. Maybe someone else on here will chime in soon if they know.

It's great you don't have any other symptoms. There are others that are asymptomatic too. No doubt more tests are in your future to determine exactly what's going on. What exactly did they already do to you that they're saying you have PBC?

Stella ❤

DX PBC 10/16

DX RA 4/17

DX Dequervain's tendonitis 6/17

[Gillian61 in reply to Ktltel]

Hi, thank you for your reply. Yes I am on Ursodeoxycholic 250mg x4 a day. I had blood tests done because my skin was yellowing. Don’t know any figures of their findings. Thanks again

Gillian

[badpiglet in reply to Gillian61]

Hi Gillian61,

If you're in the UK, you're entitled to get a copy of all your test results. Just ask for copies at your GP's reception. Some may ask for a very small amount of money to cover the cost but most don't.

Don't worry if the figures and what they've tested for doesn't make sense initially, just maybe slowly take time to find out what it all means.

This site is good:

labtestsonline.org.uk/

It might help you understand what your consultant and GP say to you and also help you when asking questions when you deal with them.

I like having a little bit of knowledge - helps give the feeling of still being a bit in control - when so much is out of control!

[cazer]

sorry to hear you have just had a diagnosis. its unlikely that you have had a wrong diagnosis as the things they look for in pbc are antibodies which cause damage to your liver... these are nothing to do with alcohol.

however if you have been drinking a lot this could also be damaging to your liver... was this a one off or a regular occurance?

i expect they have told you not to drink alcohol. you could be giving your body two things to deal with.

there are treatments for pbc... admittedly not cures but meds which slow things down.

have you seen a liver specialist?? do join the pbc society.. they have whole file of information.... which is great.

and ask what you like on here... everyone will try and support and help you through the initial process of understanding it all.... its a bit baffling to start but I promise it gets easier to understand as you go on.

my very best wishes to you cazer

[Gillian61 in reply to cazer]

Thank you Cazer. The GP says it’s ok to drink within the government guide line, however I have since stopped drinking feels wrong to put any pressure on my liver. I have seen a liver specialist, I think I was in shock has I didn’t ask any questions I just sat there.

Kind regards

Gillian

[cazer in reply to Gillian61]

yes most people come out of appointments and kick themselves for forgetting to ask questions.. but that's natural.

i now write a list... hopefully you will get another appt. if not you could try ringing consultants secretary if you have any really important questions.

but do ask on here... alot of people have been dealing with the condition for years... i had it 18years before I finally needed a transplant.... some people never need one... some have no symptoms... its so varied... so try not to worry... easier said than done i know.

i think you are very sensible to not drink... my thoughts were the same as you... why load extra work on to your liver. cazer

[Hidden]

How were you tested

[Gillian61 in reply to Hidden]

Blood tests

[Hidden in reply to Gillian61]

Was it the AMA2 test usually they are accurate but are you taking Urso. What enzymes was elevated