Joel 31

[Joel31]

Am now totally confused. Just had result of Abdo scan....normal. Bloods said PBC.

Does this mean liver not damaged yet ???

[GrittyReads]

An ultrasound scan of the liver cannot be used to diagnose PBC, it is largely done to rule out other organ or liver issues - although some consultants will do 'blood in' and 'blood out' scan- checks, to make sure the blood flow through the liver is normal.

An ultrasound scan cannot show the microscopic damage to the minute biliary tubules that are affected by PBC. For that you would need to have a liver biopsy. Only gross scarring on a mass scale, will show up on ultrasound, as that will be the marks of severe cirrhosis, not usually obvious in newly noted PBC (and if you are now being treated - presumably with Urso - it should never get to a cirrhotic stage). So it is good that they have checked all, ruled out other issues, and made sure that the liver, gall bladder bile duct, pancreas, etc, are all okay.

If your blood tests showed that you have raised liver function tests that are typical of PBC (eg, high ALP, GGT, ALT, AST etc - but not necessarily all), and you have AMAs (usually sub-type AMA-M2), then that is enough to diagnose PBC. A liver biopsy is the next option if they are not sure it is PBC: this is usually only done if people have high liver tests, but no AMAs; or if they have AMAs, and symptoms of PBC but their lfts are normal. Are you on Urso?

Hope this helps, try not to worry. If you have been diagnosed, and your scan was clear, then you are in a better situation than if all was still unclear - tho' medics really should explain things to us!

If you want to talk more, contact the 'PBC Foundation' who host this site: link at the top of page to their website, which gives info on phone and email contacts. They are lovely and helpful, with trained and experienced advisors.

[Joel31 in reply to GrittyReads]

Thank you very much. My GP is phoning today . Not on any treatment yet. I was told I had PBC due to my blood results.

[GrittyReads in reply to Joel31]

I would ask him for a copy of your blood tests (in the UK it is supposed to be your 'right', although they may ask for a small copying fee - although so long as tests are recent my GPs don't ask). If you have got PBC, it helps to learn as much about the condition as possible, as many GPs have never encountered it (in my practice only my GP has patients with it, the other 3 never have had patients with it - I asked!!). Sadly we have to become our own best experts.

I would also join the 'PBC F' (it's free) they have a wonderful, informative website - as well as a regular magazine and fantastic info compendium on PBC. Also, their advisors are great and there are PBC Groups in many parts of the UK.

Really your GP should check you for all other autoimmune conditions - as sadly we often have others - as well as all other liver issues, just in case there is anything else as well, or instead. It's best to cover all bases. Also, check those blood tests: you need to have both abnormal liver bloods (lfts - liver function tests) that are typical of PBC, and to have AMAs (an autoimmune factor typical of PBC). If you only have lfts, they will keep monitoring, definitely check you for other issues, and maybe give you a liver biopsy; if you only have AMAs and have no symptoms of PBC, then they should also check everything, and then just monitor your lfts regularly. I only have AMAs (have had since 1992 ... maybe always) and I'm still completely healthy with no PBC or anything else. However, a new-to-me consultant in 2007(?) diagnosed me with PBC on the AMAs alone ... [I have since had that overturned - by one of the countries leading PBC consultants] - but it caused a lot of worry and upset, as the local consultant was saying 'yes' and my lovely GP was saying 'no' 'some people just have AMAs'.

But, hope all goes well, and let us know how you are.

[gwillistexas in reply to Joel31]

True. My GI does fibroscan to determine duct scarring & also stiffness of liver.

[gwillistexas in reply to Joel31]

Wish you well. Let us know😊

[gwillistexas]

Same here. Abdominal scan, dr said picture perfect...labs indicated otherwise☹️

[Joel31 in reply to gwillistexas]

So did you go on the meds? What symptoms do you have?

[gwillistexas in reply to Joel31]

G'morning! I had no symptoms other than slight ache in upper right area. Found mine during yearly labs. Enzymes elevated which led Dr to check further. Mitochondrial high. GI put me on Urso , hives a week later. Waiting to see if Dr can get Oclavia

[Joel31 in reply to gwillistexas]

Not on any meds!!

See lab results on recent post!!

[gwillistexas in reply to Joel31]

Also, try not get alarmed about everything you read here. I think it's a great site but my drs nurse said don't take everything you read & apply it to yourself. I have to be careful myself. I am an alarmist. I research a lot of what I read here, if I haven't already

[Shulsey in reply to gwillistexas]

If I may add, we all have tons in common, but PBC seems to have a different variety of issues with each individual PBC'er. Hope that made a little since😕

[Joel31 in reply to Shulsey]

Thanks! A steep learning curve!!

[gwillistexas in reply to Joel31]

Yes it is. The more we can try to understand this disease, maybe the less fear we may have. I don't know though, I'm pretty shaky about it. 😔🤗 we'll be okay...we have to be.

[gwillistexas in reply to Shulsey]

Lol ! Yes ma'am it did😊

[gwillistexas]

Find a good GI Dr who specializes in the liver. I totally trust mine & he also did his fellowship in Toronto. Makes me feel even better.