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Liver & Pancreas Disorders Message Board


Liver & Pancreas Disorders Board Index


Dear abouttwodays,

I am new to this site - I actually came here looking for something completely unrelated, but your post caught my attention.

I didn't read all the pages of replies and conversations, but through all that I did read, I've seen a lot of discussion about CTs, gallbladder trouble, lab values, etc.

The first thing that came to my mind when I read your INITIAL post, and what I have NOT seen mentioned ONCE in this thread, is an autoimmune disease of the liver, primary biliary cirrhosis (PBC). Your symptoms are very consistent with that diagnosis. I noticed someone asked about your bilirubin, and someone else (quite mistakenly) said that you would have jaundice before itching. That is absolutely not true.

I have had PBC for 20 years. My liver enzymes are usually mostly normal (or borderline), except for my alkaline phosphatase, which is ALWAYS elevated. I have only recently begun having itching to a greater degree than in the past. Repeat blood work shows continued elevation of my alk phos but new elevation in my ALT and AST. While a GGTP is very elevated, my bilirubin remains normal.

All of this to say that you may have PBC (or similar disease) and still have some very normal lab values. Only a liver biopsy will be completely conclusive. It would be a good idea to have AMA tested as well (a positive result is almost always the case in PBC).

Please do update us about your condition and the latest in your care.

Sincerely,
Glenda
[QUOTE=GlendaM;5133711]Dear abouttwodays,

I am new to this site - I actually came here looking for something completely unrelated, but your post caught my attention.

I didn't read all the pages of replies and conversations, but through all that I did read, I've seen a lot of discussion about CTs, gallbladder trouble, lab values, etc.

The first thing that came to my mind when I read your INITIAL post, and what I have NOT seen mentioned ONCE in this thread, is an autoimmune disease of the liver, primary biliary cirrhosis (PBC). Your symptoms are very consistent with that diagnosis. I noticed someone asked about your bilirubin, and someone else (quite mistakenly) said that you would have jaundice before itching. That is absolutely not true.

I have had PBC for 20 years. My liver enzymes are usually mostly normal (or borderline), except for my alkaline phosphatase, which is ALWAYS elevated. I have only recently begun having itching to a greater degree than in the past. Repeat blood work shows continued elevation of my alk phos but new elevation in my ALT and AST. While a GGTP is very elevated, my bilirubin remains normal.

All of this to say that you may have PBC (or similar disease) and still have some very normal lab values. Only a liver biopsy will be completely conclusive. It would be a good idea to have AMA tested as well (a positive result is almost always the case in PBC).

Please do update us about your condition and the latest in your care.

Sincerely,
Glenda[/QUOTE]

Hey, thanks for your response. I did post my biopsy results on a new thread (titled "finally got a diagnosis"). I am currently under treatment for autoimmune hepatitis. My biopsy showed severe chronic hepatitis (grade 4) with bridging fibrosis (stage 3). Interesting you talk about the PBC though because my biopsy also showed signs of bile duct damage and though it said the biopsy as a whole supported the diagnosis of AIH, it also said there is a possibility of overlap syndrome with PBC. Now, every autoimmune marker I was tested for came back negative. I don't have my records in front of me but I know I was tested for many and they included those for PBC as that along with AIH were the primary concern for my hepatologist. But he told me since the marker was negative and that its pretty accurate, the likelihood of me having PBC was low and he's not too worried. I am not so good with asking questions on the spot so I neglected to ask about the bile duct damage and if that was something caused by the AIH or what. I do have a follow up on March 14 to see how I'm responding to treatment and I will ask then. So far I have had one lab test for my LFT's two weeks after starting the meds and not much has changed. AST has lowered only slightly (maybe an improvement but could be a fluctuation, too early to tell), ALT stayed the same, and alkaline phosphatase went up and is now mildly elevated. I am getting blood drawn again next Friday, will probably get my results the following Monday and we will see if things are improving then. I am on 3mg/day of Budesonide.





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