Newly diagnosed with PBC

[Ls400ii]

Hey everyone...I am new here and recently diagnosed with pbc. I have had high alkaline phosphatates since 2003 and no doctor ever ran an ama, which turned out high as well. I'm just learning about pbc and will probably ask lots of questions. I'm thankful for finding this site and people I can get answers from.

[grace111]

hi Ls400ii i just thought i would say hello as its usually quiet on a sunday night and saw that you posted 4 hours ago. i dont have what you have but i'v had quite a few different illness's like hep b and hep c and 2 others and i know what its like to get a diagnosis and i was very frightened. this is a great place to get support and there will be many people who will reply to you. so i just wanted to welcome you and say hello. love grace xoxo

[butterflyEi]

Ls400ii

Hello and welcome to this wonderful forum. As you will find many of us take a goodly while to get diagnosed and then follows confusion while getting sorted out and informed.

If you have not already joined The PBC Foundation has a good Web site. It is free to join and the members section is informative. The produce Bear Facts magazine which usually has good articles.

Face book is also useful for keeping in touch with three Foundation. Are you in the UK? If not there are other resources in America and Canada which I can link if you need.

I hope you have been prescribed an URSO treatment and are settling in to the doses.

Best wishes

Apologies for typos/predictive text. I should have read it thru first🙄

[StefTeaches in reply to butterflyEi]

I am in the US and have been diagnosed after a lengthy diagnosis as well. Way are the US links? I'm trying to read as much as I can, too.

[butterflyEi in reply to StefTeaches]

Hi StefTeaches

PBCers can be found at:

pbcers.org/

their presence on Face Book

facebook.com/PBCersOrg/

also

livingwithpbc.com/resources/

and last but not least the American Liver Foundation

liverfoundation.org/aboutth...

Please be careful to only research trusted sites. There are some web sites where the information can be a bit scary.

I am also connected through face book with a page run by an individual. Craig Cameron's page covers many types of liver disease including NAFLD and AFLD but his wikipedia MAY hold some information which may be of interest to you. This is a page where people with advanced stages of liver disease discuss matters which you might find a bit frightening so be careful if you decide to look on.

facebook.com/groups/livingw...

and

craigcameron.us/the-wiki/

but do also look at the PBC Foundation web site. Their member's section holds some very useful information.

best wishes to you

[StefTeaches in reply to butterflyEi]

Thank you so much. I have joined some sites but don't know what country''s what. At one point, while awaiting my biopsy, the nurse told me to quit googling it as there is some pretty scary stuff out there.

I'll definitely click on these. Thanks again.

[butterflyEi in reply to StefTeaches]

I think you had a very canny nurse.

Don't stress to much as that is also not good for you. PBC is usually slow to advance so you have plenty of time to learn as much as possible. I have been on URSO about 10 years now but pretty certain I had PBC a goodly while before getting a diagnosis. Not everything you read will apply to you as PBC can impact differently on people. One of the best bits I did read though was that PBC is not a death sentance you are more likely to die with it rather than because of it. Hope for us all!

best wishes

[Ls400ii in reply to StefTeaches]

Good Morning.

I am also in the US and doing a lot of reading as well. I read a lot of scary things as well but my doctor told me differently. He is still looking into things because I also have hyponetremia (low sodium) and they don't know why. Where do you live?

[StefTeaches in reply to Ls400ii]

WV

[Ls400ii in reply to butterflyEi]

Definitely confusion...and thankful for support groups since this all started in January of 2015... With an ampulla mass diagnosed in 3/2015... Which was benign and hasn't been found again with two trips to John's Hopkins. Now it's PBC. I'm going for an mrcp this week or next. I am in the U.S. So any links would be appreciated.

[butterflyEi]

Hi Ls400ii

Hopefully you can see my reply to Stef Teaches with all the links that I know of States side. Good luck with your MRCP let us know how you get on and what it is. I have an ultra sound at the end of this month but it is my abdomen not liver.

Let me know if you cannot see the links and I will regenerate them just now am mobile and I need the PC to place links.

Best wishes

[Ls400ii in reply to butterflyEi]

Thank you so much...I see them.

[Lindymarie]

Hi😀 I've just been diagnosed with PBC a few days ago although I e been tested for all sorts over the last few years as I knew something wasn't right!! Apparently it is caused by my thyroid and pernicious anemia. Got to have endoscopy and scan to see how far it has progressed. My appointment with consultant isn't until 30th November. So won't know until then!!! 😬

[Becca75]

Hi - I'm glad you've come here. Sorry about your diagnosis. I too had elevated (extremely HI) numbers since 2010 and no dr I mentioned it too (I've had 4 family dr.s since then) ever thought anything was wrong. Until my new family doctor. Thank goodness he followed through and got me in to see a specialist.

You must have a ton of questions - I was diagnosed in April, so I'm fairly new to this whole thing - but if there's anything I can do to help, just ask

Take the time you need to process it all.... HUGS

[lorilee58]

I was just diagnosed today 10/16/2017 in fact, I found this site about 4 months ago and I am very thankful for the answers and help I received the last four months during the frustrating diagnose process. It made coping with the unknowns easier. Lori

[gwillistexas]

I looked back through my labs & noticed in 2015 my Alk Phos was slightly elevated & nothing was said about it. In June 2026 it was back to normal. June this year it all went wrong except the ALT. Did they check Mitochondrial M2? That’s the test that landed me in the PBC chair🙄