PBC: Just has been diagnosed with PBC from... - PBC Foundation

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PBC

UliaTov
UliaTov

Just has been diagnosed with PBC from ultrasound scan but my liver function test is normal, however I have pain under the right side of my ribs when I stand for too long. Does anyone has the same symptom? And how do I know what stage I am on? And how long have I got before my liver fails? Thank you.

11 Replies
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Hidden
Hidden

Hello UliaTov.

Interesting as I didn't think one could be diagnosed with PBC from a scan. I know I wasn't in 2010. I did have a scan several months after starting to itch and it being found I had higher than normal LFTs (liver function test). I was found to have a certain antibody in a high titre (the AMAs) later that year that gave diagnosis of PBC.

You can have pain on the right side with PBC and any liver disorder. I don't go in for the so-called stages of PBC. A liver biopsy tends to give this BUT I am confident a scan can show the state of the liver. (Once saw a programme on UK tv showing 2 men who had scans liver to air, one had fatty liver, theother cirrhosis (caused by excess alcohol consumption).

If you have normal liver function test (LFTs) after PBC diagnosis you have repeat bloods to monitor changes. Have you started taking urso that is the norm with PBC. I have been on urso for over 6 years now. My LFTs have not returned to normal (not expected to with PBC but for some they can, some they can remain stable as mine seem to be doing).

I expect there'll be plenty of signs if the liver is failing badly. I don't think about anything like this, find it best to deal with things as and when as those things with having PBC might never happen so meanwhile time wasted worrying.

UliaTov
UliaTov
in reply to Hidden

Thank you for your reply. 4 years ago I had a gallbladder removed as I had a pain under my ribs, and the scan did not show anything was wrong with the liver so they found tiny stone in my gallbladder and assumed it was the cause so removed it. However, I still have pain for the last 4 years so I do not even know if it was the gallbladder causing it or pbc. I had a liver scan last week and the diagnosis was primary biliary cirrhosis, however my liver function test shows normal results. I started taking ursosan three times a day but I do worry about this condition, scares me what to expect next.

Hi UliaTov

I believe that diagnosis of PBC is confirmed by blood tests and a liver biopsy if necessary. Some on here have described pain under the ribs which can be eased with a warm hot water bottle or some have found a warm bath soothing. The main described symptoms are fatigue and the so called itch of PBC. I was diagnosed in 2006 I do not know what stage but with Ursodeoxycholic acid my LFTs returned to an acceptable level. Try not to worry about stages you may live a long life without progression once on the URSO. Each of us differ in our disease so it is not possible to give a time line. Eat a healthy balanced diet, stay away from processed foods, enjoy what you enjoy doing.

One of the best things I read at the begining was that a person is more likely to die of PBC than because of it. For me it levelled out some of the worries.

Join the PBC Foundation through the icon above. Free to join. In the members section there is a compendium with good information. There are also back copies of the Bear Facts magazine which have some useful articles.

if you are in America there is PBCers.org

There is also a Canadian Society but I am on my tablet not the PC and find it difficult to go between screens to get you the link.

Be careful of old information which can be scary and ill informed. Stick to trusted sites. I notice you have been given a diagnosis in terms of cirrhosis, PBC is now known as primary biliary cholangitis and not cirrhosis. Better detection rates mean that more people are diagnosed before the cirrhosis stage giving a better outcome for most.

This is a great forum full of good people and I am sure you will find it a good resource but if at any time you are troubled with something that this forum cannot help with the good people at the PBC Foundation are there.

best wishes

UliaTov
UliaTov
in reply to butterflyEi

Thank you so much for your reply and information, appreciate it.

I was told too that PBC can't be diagnosed by ultrasound scan, biopsy can stage you but it's not a defo as it all depends which part of the liver they use. & You might live to a ripe old age or even pass before your liver fails, we're all different & how long is a piece of string. The best thing to do is see your specialist, join the PBC foundation & read their info, don't panic, & enjoy life day by day. Xxx

Hidden
Hidden
in reply to teddybear7

Hello teddybear7.

I am certain PBC cannot be diagnosed with an ultrasound scan or I would have been diagnosed 5 months prior to having a final blood check of antibodies that gave diagnosis in December 2010.

teddybear7
teddybear7
in reply to Hidden

That's what I was thinking x

Unfortunately, in my country we do not have good liver specialists, the one who diagnosed me said to me that whoever had their gallblooder removed automatically diagnosed with chronic cholangitis. I am doing a private blood test this week to check for AMA as I understand if it is positive then I definitely have it. My ultrasound scan showed reactive change in liver which the liver specialist says it is likely to be due to pbc but my liver function test showed results in normal range, which apparently means it is early stage.

Hidden
Hidden
in reply to UliaTov

Hello UliaTov.

Obviously I am not a doctor but I think you might have maybe misheard or the doctor hasn't filled you in correctly regarding a diagnosis. Or you have PBC and it's not been explained how the doctor got to that diagnosis. Reading this latest posting here, I am sure cholangitis is different from PBC perhaps. I know there is another liver disorder known as PSC which is a similar one and that ends in cholangitis also.

Out of interest how was the PBC described as in the letters? Was you informed of the supposed new name change (I say this as I disagreed when it was suggested for certain reasons) as in 'cholangitis' or it ending in 'cirrhosis'.

UliaTov
UliaTov
in reply to Hidden

Hello Peridot. The diagnosis was Chronic Cholangitis which I assume was the same as Primary Biliary Cirrhosis (Cholangitis) as that is how it is named on nhs site.

Hidden
Hidden
in reply to UliaTov

Hello UliaTov.

I shall take a look at that but I am certain that cholangitis is perhaps different from PBC though in another country as I think you stated you are in, it might just be that it is said to be this.

I have just looked on patient info site and from what I have looked at at a glance cholangitis is said to be something slightly different? Sorry if I am wrong (worth asking your doctor to verify a diagnosis?) but regardless you learn something new every day.

patient.info/doctor/cholang...

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