Newly wobbly liver, or at least I hope so, on the basis of; if it is still wobbling things can't be that bad.

[MrsGif]

Hello Liver People, I have just found out that I too am a liver person. When I went to join the BLT (the irony of this also being a bacon sandwich does not escape me), I realised they are under the umbrella of Healthunlocked and I'm already a member both of the BLF and the Raynaud's group, this is becoming excessive.

I've been diagnosed with PBC, as an underweight teetotal individual with substantial chronic health conditions I'm rather mortified. However, given my limited understanding of the condition it seems likely that I've developed this because I have wide ranging immunological inconsistencies and I think I'm very lucky that it appears to have been spotted in it's very early stages.

I'm very interested in human biology and consequently reasonably well-informed but the liver is not something I know much about just because it's so complicated and so I'm having to catch up pretty fast under the doctrine of know your enemy (the condition not my poor, beleaguered liver).

But I do know what great forum this is and just how amazing many of its members are, so this is a small light in what is otherwise a dark and rather scary period my life. I'm gonna leave my post here on the basis that it's already plenty long enough and return to learning about my wobbly friend and it's malfunction but I suspect I may be back seeking the collective wisdom of the Liver People before I go to meet my GP to discuss the findings of the recent tests I've had. She is a lovely lady I have a huge respect for and confidence in but like everyone in the field she only has limited time so I want our conversation to be as productive as possible and right now I don't even know what questions I have with the possible exception of; can you help me banish the hellish itching before I lose my mind entirely? Now I'm off to slather much of my body with menthol cream because it's all I have!

[Yellowsydney]

Hi, I'm not very good at posting links but somewhere on the British liver trust website there is a suggested list of questions to ask. If you go on their website and put questions to ask into the search it will come up with the page, they also have a patients charter that gives advice on what to expect.Good luck

Hilary

[MrsGif in reply to Yellowsydney]

Thank you Hilary, I will hunt that down x

[Richard-Allen]

Bile is produced inside the liver that's used to help digest fats and remove waste products from the body. It passes out of the liver through the bile ducts.

In PBC, the immune system mistakenly attacks the bile ducts.

It's not clear why this happens, but it's thought to be caused by a combination of subtle differences in how the immune system works.

The bile ducts can become damaged and injured, causing bile to build up in the liver. This further damages the liver and may lead to scarring (cirrhosis).

I have known a few people who have gone on to need a liver transplant. Early identification and treatment may help a lot.

The British Liver Trust has some extensive information on their website, which can be found by clicking on this link: britishlivertrust.org.uk/in...

You are certainly not alone in having this condition. Have a look at the PBC Foundation – support for life website: pbcfoundation.org.uk/newly-...

There is a video on this site that may be of help, I see this is also available on YouTube and here is that video: youtu.be/73yDeIKmMQY(Not working as expected?)

Here on HealthUnlocked there is a PBC site, here you’ll be able to talk with other people who are living with this condition: healthunlocked.com/pbc-foun...

I do hope some of this is of help to you.

Best Wishes

Richard

[MrsGif in reply to Richard-Allen]

Richard, thank you so much for all that information, I'm going to work my way through all of it before I see my GP. I do seem to have an unnecessarily zealous immune system which has already raised hell with a few of my bodily functions but none as serious as this. I am not a good candidate for a transplant due to my ruined lungs so I think the hope is that this has been caught early enough to keep it under control, the alternative is not something I'm ready to deal with yet although I'm aware I may have to. I'm very grateful for your supportive advice though, I'm getting my head around all of this gradually but at least so far the test results are far better than they might have been, I'm glad of that. Thank you for being so kind and helpful x

[gillrich]

Hi I have read the replies and now direct you to the pbc foundation for all your up to date accurate info on pbc. Membership is free and once a member you can download the pbc app to get answers to questions. Also on a Thursday at 2pm you can ask questions to a top pbc consultant you can email your questions to the foundation or watch on Facebook and tect in your question

Pbcfoundation.org.uk

Hope this is useful I have been diagnosed with pbc for 18years

[MrsGif in reply to gillrich]

I will look at this tomorrow Gill and it's very heartening to hear from someone who has lived with the condition long term. I'm remaining as optimistic as possible, plenty of time for worry if it's necessary but I'm not going to adopt any negative emotions prematurely, I'm a tough old bird and believe I can learn to live with just about anything. I'm very grateful that you've taken the time to direct me to such a specific resource, many thanks x

[Hidden]

Hi MrsGif, and welcome to this friendly forum. I'll attach our information for you and hope it is useful for you. britishlivertrust.org.uk/in...

If you would like to phone our nurse led helpline to talk things over, it is open Monday to Friday 10am to 3pm on 0800 652 7330.

Take care,

Trust10