Do only mild elevations of ALP rule out PSC?

I was told via two Ct scans and a MRI that I have liver fibrosis. My blood work was continually coming back normal up until 6/15/12. Since then my ALP has gone up and down, but still only very mildly elevated, but my AST and ALT are steadily going up each time they check my blood. I have tested negative for EVERYTHING. I dont have Hep, I dont have HIV, I don't have hemochromatosis. I tested negative for AMA, and ANA. My GGT level is 169 and keeps going up each time they check as well. Ive NEVER in my life had elevated LFT's. I dont drink, smoke and never done drugs.

Im so confused as to whats going on with me?! My gallbladder has been checked and its normal. Ive had pain under my right rib cage for 9 weeks now, off and on. Sometimes its severe and sometimes its barely there. I went to the hospital today to have a liver biopsy and they told me they wont do it because the position of my liver thats damaged it at the very top of the hepatic lobe, right under my lung. They said there were too many risks involved with it being in the location. The Dr even told me that it could be nothing at all? I said, what? No somethings going on, the radiologist said its fibrosis and now my liver enzymes are abnormal. She said to have another CT in two months and if its spread and my liver enzymes continue to go up then they would do a biopsy.

Please can anyone give me any advice? Im so confused as to what this could be. She mentioned that I might want to have a ERCP, but only if my lfts get really high. She told me thats its not possible that I have PSC with only mildly elevated ALP, but what about the GGT? My GGT levels are 7 times the normal.

Amanda - my understanding is that diagnosis is done by biopsy/pathology. I don't find it logical that the disease could be ruled out simply by Alk phos level or any enzyme level because they go up and down with cholangitis flareups.

I would insist on an ERCP because they can do a biopsy/scraping of the bile ducts. Also they can visually see the bile ducts/floroscope. If they are tortuous then that is a good indicator. Also liver biopsies can be done by CT guided jugular intravenous. Sounds bad but actually is as quick as a side puncture, you are mildly sedated and it is over before u know it. You feel some bee stings on the skin w/ local anesthesia and that's it.

Why wait 2 months? There is also something called PBC - primary biliary cirrhosis.

Hi - You have been told a furphy. My son is 12 and was diagnosed with PSC just 6 weeks ago (though there is a question mark on the diagnosis, it is what the doctors are saying). He has had only mildly elevated ALPs (583 was the highest when normal range is 100-350. His ALT and GGS were high (~400 and ~260 compared to <40 for normal). You should insist on an ERCP or at least an MRCP immediately. In Australia these would be given routinely because they don't cost as much here as in the USA - possibly because litigation is not a big issue (you cannot sue doctors here unless they really stuff up a lot). Is it possible they are trying to delay this procedure because of the cost?

Thanks guys, I swear some of these Dr's here in America honestly just dont care about their patients. Im going to the Dr next monday and ask for the ERCP. They wouldn't do the biopsy because they are scared they will puncture my lung. The Dr basically told me that liver damage isn't as important as cancer. I was like I know I don't have cancer, thats not the point of getting the biopsy. It was the Dr's at the hospital who told me this and refused to do the biopsy. Thats why she told me to have another CT scan in two months and if that shows that the damage is still there and has gotten worse then they will do a biopsy!!

Here at my clinic the ALP normal range is between 32 to 92...When I say my ALP is mildy elevated I mean barely mildly elevated at 95. It has gone up and down. However my AST and ALT has steadily been going up each time and are now above the normal range. My GGT is going up, and the normal range for that is 5-24 and mine on my last test was 169.

At first I did think I had PBC but then I tested negative for AMA, but I've also tested negative for ANA and every other antibody. So basically because my ALP isn't in the 100's they dont see a problem with my condition or care to find out WHY I have liver damage.

ALPs are higher in children during growth spurts which is why our reference range is so high. It is still relatively low and the average result over a few weeks was under 400 which is still low. For the record, I do not think you have PSC either. But there is something going on and you should find out what. Doctors in western countries like to use the wait and see method. If it returnes to normal, they are happy. In many cases, this apprach is fine, but it could be a very early indication of something more serious. I prefer t use the "gut feel" method. You know your body better than anyone so if you feel like something is wrong, there probably is.

Yes I agree, something is deff going on. I mean who knows I could have cancer, or maybe just maybe Ive caught this disease very early and I have not had my blood work done exactly at the time of the blockage! From what Ive read, it takes 72 hours for the ALP to leak into your blood after a blockage, and then right away it goes down after that 72 hours. The GGT is only found in the liver and only leaked if there is a blockage. My gallbladder has been ruled out, so I know its my liver. What I'm going to do just to be safe, is have the ERCP test. I mean it can only rule out PSC. My body is a mystery right now. The Dr's have told me that its not possible to develop liver fibrosis in a year, but a year ago I had a normal CT scan, so obviously my body does what it wants.

Im just going to wait this out, and the next time I have a "attack" which is when Im in severe pain Im going to have a blood test 72 hours after and I bet you anything my ALP will be sky high then.Its just so frustrating knowing you have liver disease but not know why!

Great post. Hopefully folks here can help!

Thanks everyone who responded to this.. It makes me feel like im not alone