PBC Foundation
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im scared and dont know what to do

im scared and dont know what to do

i ned some feed back...was diagnosed with pbc 09/2016 since then all test have come back ok blood,scans,ect..i always felt dr made a mistake when he told me my pbc was caused by drinking..so i just went to a liver clinic for a second opinion ..they took there own blood work which came back as normal i dont even have the antibodies in my blood for it they want me to stop the urso for 3 months to take blood work again and im scared what would u do?

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I dont understand why you were put on urso if you didnt have ama

As far as i am aware pbc is not caused by drinking

Good your bloods are normal

Have you seen a hepatologist

I would be inclined to take advice from a hepatologist

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Some people do have PBC even if they don't have AMAs. In such cases the bloods would be more closely monitored over a longer period, and symptoms taken more notice of, but most likely a liver biopsy would be taken to confirm PBC or rule it out.

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PBC is never caused by alcohol. Sounds like your doc needs to go back to school! Shocking that someone in the medical profession is that wrong. Wonder what else he/she has been wrong about...? Working on the assumption that you saw either a gastroenterologist or a hepatologist at the liver clinic then their advice has to be taken at face value. However you might feel more comfortable getting an additional opinion. Hope you get peace of mind soon, one way or another.

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yes he is a gastroentrologists at the liver clinic idk how a dr can misdiagnosed something like this

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thank u

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You for sure need a second opinion. I too was miss diagnosed by my gastroenterologist luckily I felt he was wrong somehow and have changed to a hepatologist at a different hospital I am lucky I have a great GP too. You need to challenge your diagnosis for sure. As everyone one has stated PBC has nothing to do with alcohol although a lot of PBC'ers have either given up or cut down as it is a toxin that makes the job of the liver/ bile ducts harder. Good luck go back to your GP and get a referral else where. Where are you living?

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us

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Take yourself back to when you first went to the GP and what your symptoms were ?

Have you had a liver biopsy ? What is the number on your bilirubin on the blood tests ?PBC is not due to alcohol !!

Definitely more opinion is necessary. Don't be scared be strong and ask the questions . AnnaC

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first mistake was somebody saw something on my liver from a ultra sound i had on my gallbladder on the paper said suspected cirrhosis but all my test say normal liver no lesions..masses and smooth

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If you have faith in the liver clinic and they advice stopping medication.... that seems the way to go for a short while Then they will test again. We mostly live with PBC, not taking Urso for a while and being monitored is sensible. Biopsy and further blood tests may be suggested by liver clinic.

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yes further blood work in 3 months of being off the urso

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I must be missing something. Based on what test results did they diagnose you with PBC? Many of us were diagnosed as a result of a routine testing, when some of the LFTs come back elevated. Specifically Alk Phos, AST/ALT and GGT. If this happens, then AMA is tested. If AMA comes back positive, then PBC becomes a strong possibility. Ultrasound and liver biopsy follow to complete the diagnoses. PBC is not an alcohol related illness.

Best to you!

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If your blood doesn’t show anti mitochondrial antibody, you liver enzymes ate normal and your liver ultrasound and biopsy are normal, you don’t have PBC.

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i never had a biopsy

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My GI who diagnosed me with PBC based on high levels of ALT, ALP, AST, and the AMA marker was clueless about how to control this disease, and it became obvious early on so I followed my intuition and went to a transplant hepatologist. Unfortunately they confirmed the diagnosis through a liver biopsy, however, their course of treatment is much better and I have confirmation of what stage I am currently in. I personally would not trust my long-term care with this disease to a GI... find a hepatologist!

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i went to a liver clinic we have here they only do liver dieases and transplants so i think im where i should have been a yr ago the dr who diagnosed me is a gastroligists

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Some GI’s may be knowledgable enough, but I knew my GI was not. He diagnosed PBC by blood work only and told me there wasn’t any need to do a liver biopsy to determine what stage. I had never had one done before and I felt there would be no way to gauge the progress of this disease without staging it first. At that point I made the move to a Transplant Hepatologist who specializes in liver only and I am so glad I did as I am already going into Stage 3.

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sounds like the dr i had i had no biopsy told me i had pbc coz of blood work i should have gone earlier

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Well the upside of being with a transplant hepatologist is they do biopsy’s every year to follow the progression. When the time comes for a transplant, you are already in their pipeline and will be automatically placed on the transplant list.

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thats what they do at this clinic so i think im in the rt place now

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