PBC Foundation
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Elevated Bilirubin

Did any of you have elevate bilirubin upon diagnosis? If so, do you know the level? What stage were you at diagnosis?

I'm just curious about other people's experiences. My bilirubin was 12 at my last draw and I don't have my liver biopsy until September 12th.

Thanks!

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If you go to my profile you will see where I've posted my hepatic panel. My heptologist is keeping me on a standing order to have this bloodwork every couple of weeks because he is keeping track of how the Ocaliva is working or not working for me. Im now alternating Ocaliva 5mg with Ocaliva 10mg for a month. Then I'll be on the 10mg. Im also on Urso 1000mg daily. I am stage 4 PBC with stage F3-F4 cirrhosis, grade 2 varicies. Among other health issues as well.

Stay strong❣️

Shannon

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My bilirubin all normal

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my bilirubin is currently 21 20is the limit i believe no idea what stage im at never been mentioned i am having fibre scan on 12sept apparently more accurate my consultant z but each one have there own opinions hope u get on ok with biopsy x

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Mine was 1.3 which is elevated and they started me on urso and it is .8 now normal..... see a specialist.... my biopsy showed no cirrhosis yet

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Same as me in both respects. However, I finally had an MRI last week. It wasn't due until 2018 as there are long waiting lists for everything here. So I have my clinical pharmacology appointment to explain it next week. The last time I didn't see my Gastro but instead a junior doctor. This is worrying. I could tell he knew very little about pbc. The Gastroenterologist i am with initially told me to just keep taking the Urso and vitamins C,D. Very little info besides. Other than that he basically said it's a serious life-long condition. I came out of that first consultation stunned. Then looked PBC up online and discovered the rest: life expectancy and what was comming down the line. That week I was in shock threw up twice and tried to carry on as normal.I told no- one. 9 months ago now. The Urso has improved my blood readings so I am lucky. I wonder if my pain is a side effect. I don't seemed to have had any great weight gain. I have a host of symptoms (including pain) that keeps me awake nightly. Yet reading posts here) it can still be described as mild. A close friend asked me two months ago was i sure anything was wrong because i look healthy. i brought her my diagnosis fron the hospital. On pain levels: I think our pain tolerance rises anyway when its regular ? I allow myself paracytomol once or twice a week as i work evenings and need some sleep! The initial diagnosis explained symptoms I have had since my twenties, so some relief.

Just trying to think of the right questions for next week at my long awaited appointment...

I wish I had a good well informed doc and Gastroentologist . I don't feel I have when I read through the info and experiences on the site. Glad I found it but keep ducking out again as the info gets so depressing at times (sorry!). Well I am here now it's 4.41 am in the morning and I can't sleep with aches and pains again. And of course the over thinking! i am pretty sure i am not the only one there...Lastly, I have been on Sertraline for depression for two years. I feel grateful for this as I itch very little. This drug is particularly helpful to some for the itch I learned on this site. Just lucky I got prescribed this one and that for me it does seem to have this positive side effect. Up to two years ago before any diagnosis or medication I had extreme irritation on face and hands and merciless scratching. All gone in the last two years. Sorry this rambles, I feel too tired to edit properly. I tend to write here then delete all but won't this time. Just in case anyone can offer general advice on questions.I know its different for everyone. Thanks to everyone who writes here. I am glad to have somewhere to turn to at this hour.

Ann

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Hi

I'm sorry to hear that you don't have confidence in your doctors knowledge of PBC. Are you a member of the PBC foundation? If so, I highly recommend you read the latest Bear Facts Newsletter.

There is an 8 page pull out in the August 2017 issue that outlines treatment standards and you will find it very helpful when preparing for upcoming dr visit.

If you haven't joined the foundation it's free and easy to sign up. Hang in there with the dx. Don't read outdated PBC info on websites- especially regarding life expectancy etc. hope you got some sleep!

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Mine is normally normal but has been high a lot when other issues were happening. Pregnant and when I had gall bladder problems ( has been removed).

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June 29th my total bilirubin was 20, which in my drs lab is perfect. 20 is bottom normal in their range.

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I'm sorry, lol! Corrected one & messed other up. .20-1.60. There😊

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My drs lab range is .20-1.60

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Oops,,, .20-1.6

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Just looked at hepatic profile. All bilirubins low normal

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