PBC Foundation
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Pbc diagnosed but not been tested

Hi there. I saw the gastro last week after series oh high liver tests. After n hour of prodding, poking and questions he told me I have pbc. He gave me urso and wants to see me again in 6 months. I've had no other tests but reading online everyone seems to mention ama and biopsy. Should I be seeing my gp in the meantime and asking for these. Should I stop the urso until diagnosis confirmed or would you wait to see gastro again then ask for the tests.

Thanks

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Do you have AMA, ALK PHOS, ALT & AST elevated? If so, you more than likely have PBC.

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You should get your gp to do ama test i would advise you to take urso i have been prescribed urso although my tests for pbc are inconclusive

My specialist wants to see if my blood levels come down

My gp did the ama test and it came back positive

I had an ultrasound and finroscan instead of biopsy

Do you have symptoms

I would be concerned that your gastro has made this disgnosis without doing other tests to confirm pbc

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Thanks for the replies. I initially went to see gp with menopause questions and broken veins/spots/acne on face (I'm 47). As I hadn't seen gp for about 4 yrs he suggested an mot and I had bloods done. High liver enzymes tested 3 times since so he sent me to gastro. As I said originally no other bloodtests but gastro did a physical, checked me allover. asked about Reynauds (which I do have). Then made the diagnosis. Only symptoms I have are itchy legs, but that Is only in hot weather (looked on pbc foundation website for other symptoms). I will make appointment with gp and ask for ama test first. Is there anything else I should be asking him to test for too

Thanks again for your help

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I think a positive amam2 is indicitive of pbc

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I also had liver scan. All I got back from that was course liver?

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It might be a good idea to get referred to a hepatologist for 2nd opinion

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I agree...

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I would get in touch with the PBC foundation and speak to one of the advisors, they will help you get together all the information you need, then go back to your GP fully armed with all you need. There are a lot of factors to consider when getting a clear diagnosis.

The AMA/m2 is an important test and I would ask for it to be done. A biopsy is not always done in the UK, depending on the results from other tests.

I would definitely want a better description from the liver scan, if it was a fibro scan this measures the stiffness of the liver it doesn't diagnose , but the level of stiffness is an important factor.

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Hi Rleo,

If you haven't done so already, I'd ask for a copy of all the tests/scan you've had done. It may be that an AMA test was done alongside your liver tests. You're entitled to have copies in the UK, just ask at your GP's reception. They also receive copies of everything done at hospital.

If they have done an AMA test, the lab will probably automatically do an AMA M2. But don't be surprised if after 1 maybe 2 AMA tests, they don't test it again.

In the UK they don't rush to do a biopsy unless it really is necessary.

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Thanks to all for replies. Update: saw gp last night and asked about ama. He said it had already been done along with alp,alt, as and ggt. All results were raised which was the reason for gastro referral. This is probably the reason gastro could diagnose so quickly. I now need to look at what I can do to improve lifestyle, lose weight and try to fight this pbc diagnosis.

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