Mum has pbc

[Flower-fairy]

Hi..

What are my chances as a woman in her 40's from also having pbc as my mum has it? She was told by her gp that she has probably had it years. Can I ask my gp to be tested?

[Hidden]

Hello Flower-fairy.

I don't know if you may or may not develop PBC. Some say it is hereditary, others not.

I have no idea regards my own family as my mother died when she was 43 of something totally unrelated whereas when I was 45 in early 2010 I started itching and by the time the end of the year was reached and I was 46 I was diagnosed with PBC. I have a 30 year old daughter myself but we've never talked about it and she's never asked if it could be an hereditary condition.

I am not sure GPs just do PBC testing if you are in the UK as I somehow suspect as the NHS doesn't tend to deal in certain conditions and I think PBC is one. Unless you had certain criteria (ie symptons and above normal liver function tests (LFTs) and then further blood check on antibodies (AMAs for short is one usually found in a high titre (measure) in PBC of which I did have) I doubt a GP would just test. Normally without antibodies (if PBC is determined) and some liver disorder suspected a liver biopsy often tends to be carried out.

It seems from what I've read on here and in genuine info on PBC a lot of patients tend to present to a doctor with symptons that leads to diagnosis although some are having blood checks as routine and then an above normal LFTs may be found that is then investigated further.

Personally I'd not get stressed about it myself though these things can be at the back of your mind as I know but perhaps airing your concerns to your GP might just allow you to have your LFTs taken from time to time just in case they start becoming above the norm?

(It was mentioned by a friend of mine that I should perhaps be tested for an anuerysm a few years ago as my late mother had a sudden brain haemorrhage and then 3 years ago my sister had one (fortunately she has recovered well but has appalling short term memory and couldn't live on her own). I have to say I do not think about these occurrences and if it might affect me plus no medic has mentioned any sort of testing knowing the history.)

[Flower-fairy]

Thankyou so much for your reply peridot. I couldn't possibly talk to my mum about it as she just doesn't discuss such things, it's very much a private matter for her and I am having to do all my own research. Maybe I will mention it to my gp, I don't have any obvious symptoms..was just curious. I guess what will be, will be. Thankyou for the info.

[Hidden]

I think anything you can do to ease your worries should be the way forward. If you have any concerns I would speak to your GP, while there is not routine testing for PBC, I am sure they could put your mind at rest.

Also I know my doctor has always wanted to know the family history for lots of conditions diabetes heart conditions etc, so if your worried about the possibility of PBC being in any way hereditary having that chat with your doctor will at the very least put it on your notes.

[Juamcc in reply to Hidden]

Autoimmune, to me, suggests heredity.

[butterflyEi]

Hi Flower-fairy

To the best of my knowledge no one else in my family has PBC.

If you are worried or if the thought continues to nag in the back of your mind causing you worry I cannot see why any doctor would not give you a blood test although in the UK currently the definitive test is a biopsy which is not to be recommended unless really needed.

When I was diagnosed the PBC was found after I had presented to the doctor for a totally unrelated disorder. Even after a biopsy I was found to be asymptomatic.

best wishes

[Hidden]

Hi Flower-fairy'

Unlike those above I do have a family member with PBC. Both my cousin and I were diagnosed 28 years ago (the same year) with PBC, she has since had a transplant, and I am in Stage 4. Our grandmother also died from an undiagnosed liver condition which, from the symptoms she displayed, makes us think she also had PBC.

From my understanding PBC is thought to be a genetic condition, as opposed to being hereditary, i.e. it can run in families, but is not necessarily passed down, say, from mother to daughter.

[Flower-fairy]

Thanks for the replies, appreciate that. I don't know of any other of my family members who have/have had pbc. I guess I just wondered about the odds but no one can give me a definite answer. I don't know which stage my mum is at, I'm not told any info and I dare not ask if I am honest, as I believe she wants to keep things to herself. I have had to look up all my info online.