Ok so I just found out I have PBC, with intrahepatic cholestasis. The confusing part of the pathology report is as follows.
Negative for increased iron stores.
Negative for increased portal Fibrosis.
I know what negative means, obviously. However what does the word increased refer to? I thought you either don't have Fibrosis or you do? I'm so confused about what that means. I do have hepatic Fibrosis diagnosed via CT scan and MRI, but they didn't biopsy that part of my liver.
Amanda,
I'm no doctor, but I would take that to mean that you do not have portal fibrosis. Portal fibrosis occurs in Stage 1 of liver fibrosis and worsens with each stage. To me, the word "increased" means "higher than what would be seen in the average person with a normal liver".
The same applies for the iron storage. Apparently, there is no evidence on your biopsy of an increase in iron storage. That's a good thing....you do not want increased iron stores.
I interpret the 'negative for increased iron stores' to mean that that is a good thing as apparently when the liver reaches an extremely bad state the storage of iron increases somewhat.
I know prior to the AMA test I had a blood test for Wilson's Disease which is where the liver stores more copper and that came back negative.
I've no idea of the other 'portal fibrosis' but it to me sounds like it is a good think as KarenRL states.
I've never had a liver biopsy and you have actually highlighted why I don't fully agree, you say a scan showed did state hepatic fibrosis but not liver bioopsy (?). To me with biopsy there's only a small picture to be gained due to the biopsy site and the liver can be damaged on one part whereas perfectly healthy on another and we all know the liver can function pretty much with only a small healthy part.
Thanks guys for the answers. You see before my biopsy they really didnt know what disease I had. So they took a biopsy from the non fibrosis part of my liver, i have fibrosis at the top of my liver! I askes them why they are taking a biopsy from the normal part of my liver and they said disease of the liver affects every part of ur liver! Well now they know thats not true bc with PBC it doesnt affect every part of ur liver. They wont biopsy the fibrotic part bc its right there by my lung and its to dangerous! So i know i do have fibrosis just not in my entire liver. I just hope they dont want to do another biopsy
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