PBC Foundation

Second opinion

Have seen a different consultant today for a second opinion, he says I definitely have pbc (from blood work he believes it's early stages as levels not too high ) he will increase my urso in the new year ( in line with my weight )

But I definitely need a biopsy as bloods for aih are not normal and bloods for fatty liver are also not normal and he wants to try and get a definitive answer to which one I may have ( also will use biopsy to stage pbc ) will then look at meds once results are in , still worried sick about having biopsy but need answers.

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Hi, Hopefully someone with experience of a biopsy will see this and post to answer your questions and reassure you. If not, you could contact the PBC foundation - link at the top of this page to their website - their advisors are lovely. Also you could re-post, but with a first line/heading that says eg : advice on biopsies.

I don't have personal experience of a biopsy, so can't really comment. But loads of people on here have had them and the general opinion seems to be not to worry, as it's not painful or risky ... just boring keeping still after. Plus, they are the definitive diagnostic procedure - so it's good to know.

Most importantly: in general, for biopsies and in particular for PBC: Don't worry!! Stress is the worst for all autoimmune conditions, so: have fun, treat yourself, do things you love and concentrate on chilling and spoiling yourself.

Take care, hope you get some answers.

Gritty

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Thank you for advice, I rang the foundation and spoke to someone about biopsy , I then postponed it until I had seen consultant and had a proper reason for needing it ( possible AIH ) and it's good to know that they can use the info for my pbc

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Hi I had a liver biopsy last year it is not too bad at all. I was given a medication to relax me then they numbed the area, I could feel pressure but no pain really then had to lay down for a day as to not cause bleeding then I left the hospital in good condition. I was sore in the liver area for a few days but tolerable. I think you will be fine it’s rare to have any side effects or bad outcomes in fact I haven’t seen it mentioned yet on here. It’s worth it to know you get a diagnosis out of it right.

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Thank you , just a scaredy cat 🙄

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I understand I was the same way hang in there.

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I had a biopsy done in August and that was how they determined I definetely have PBC. The biopsy was so easy and the nurse & doctors were great. It was the best hospital visit and it didn't hurt at all. Fatty liver was ruled out, though PBC was confirmed.

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Thank you for a positive comment, still worried but know I have to have it done

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I understand your fears. I has it done ~3 years ago. They put me completely under anesthesia.

Only thing was the results were difficult to interpret by that hospital. My Hepatologist sent the samples to another expert at Columbia Presbyterian for the PBC diagnosis. Hepatologist told me there were only 2 places he thought was the best for a 2nd opinion: Columbia Presbyterian & Cornell Weill.

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Hi Louisethew don't worry about liver biopsy I had one a couple of years ago although it didn't confirm any results re PBC/AIH overlap. Nothing to it you may just get an ache in your right shoulder for a while and you will have to lay on your side for a few hours, just remember to hold your breath when they take the biopsy, over and done with, although I was terrified when I had mine. Good luck hope it gives you better results than mine did

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Thank you , I'm hoping to get an answer as to what causing other raised bloods desperate to sort out some travel insurance and nobody will insure while under going tests 🙄big family holiday booked to Florida next year so definitely need insurance for USA 🙄

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Your levels do seem high, do you know if they yo-yo or have been high for a while. Are you on any medication I take URSO and have done for a long time it seems to work for me I am only at stage one and was diagnosed around 2004 apart from the consultants mess up I am now ok although my last bloods were raised but I had been on holiday and had a few drinks having bloods done again next week so hope they have gone back down as I do yo-yo. Keep posting and try not to worry

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Amazing you have been able to stay Stage 1 for so long. You are fortunate. How do you do it, or is it the good results of Urso?

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I guess I am one of the good reactors to Urso I have cut down on alcohol and try to eat healthy thank goodness I stuck to my instinct to refuse immunosuppressant which it turns out I didn't need. I am going to follow up on my boarder line hyperparathyroid diagnosis once my Dexascan results are in as the symptoms are the same as PBC just question the original diagnosis as the consultant made so many errors I was treated as an alcoholic drug taker like the majority of his patients which is far from being the case thank god I had the sense to rebell and question him before he caused me damage. Thanks to the PBC foundation and British Liver Trust for guidance

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So happy for you😊. I hope your path continues to be bright💖

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