Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 Laurie, The doctors were quite puzzled over me for many months and still are to some degree. I never do things 'normally'! As far as blood tests for the autoimmune hep (AIH), the only one that was positive for me was my ANA, the other anitbody (SMA-smooth muscle antibody) that can go along with AIH were negative. In fact, my ANA was actually negative the last time it was tested, but I am on plaquenil for lupus and my rheumy says the ANA was negative because the plaquenil was negative. Most of the time my ANA is a low positive (1:80) but back in Sep 01, when I'd been off plaquenil for a year, it was 1:360. When you say they did blood work for AIH, I assume you mean the ANA and SMA. If they were both negative, that would make the possibility of you having AIH slim. However, if the ANA was only tested once,that may not be totally reliable. My daughter's ANA has been tested a total of 3 times. It was a low positive (1:80) twice and negative once. She has RA, so the low positive probably had to do with the RA and hopefully she does NOT have lupus. There are actually three main types of autoimmune liver disease. They are AIH, primary biliary cirrhosis (PBC), and primary sclerosing cholangitis (PSC). With PBC, the most important blood test is the mitochondrial antibodies. It is positive in 95% of people with PBC, so if it was negative, it would be unlikely that you have PBC. From what I have read, there are no antibodies that go along with PSC. Here's a link to a great web site on liver disease http://www.gicare.com/pated/ecd0001.htm It says the following about diagnosing PSC The diagnosis is usually made by cholangiography, an x-ray called ERCP that involves injecting dye into the bile ducts. If there is narrowing of the bile ducts, the diagnosis of PSC is confirmed. In my case, prior to the diagnosis of AIH and the beginning of treatment, my liver enzymes fluctuated anywhere from normal a time or two to the high 700s. They were the highest during times of the severe RUQ abdominal pain, nausea, and vomiting. Sometimes my amylase and lipase were elevated, sometimes not. Also, many times the lipase wasn't checked so I'll never know if it was elevated during many of these attacks. Once my old GI finally did the liver biopsy and found out there was a 'little' something wrong with my liver (AIH and stage 3 fibrosis - fairly significant damage) and they began the prednisone for AIH, my liver enzymes were near normal after just 2 1/2 weeks. For the most part, they stay near normal unless I'm having an episode of the RUQ abdominal pain, nausea, and vomiting. After I was diagnosed with AIH, the doctors kept blaming my pain and the spikes in my liver enzymes on the AIH. It was only after I saw the Hep at Vanderbilt and then was put under the care of my current GI that I was told that the pain was ABSOLUTELY not from my liver disease. It is fairly stable with the medication. The pain and spikes in my liver enzymes are from my pancreas, regardless of whether the panc enzymes are elevated. The GI thinks my CP is in part caused by my bile not flowing properly. If the bile is not flowing properly, it can back up and irritate both the pancreas and liver. If the liver is being irritated, your liver enzymes will be elevated. When your liver enzymes are elevated it simply means that at that moment, your liver cells are dying at a faster rate than they should be. Perhaps my liver is quicker to become irritated because I do have liver disease and my liver is already comprimised from the damage. When I do have a panc attack, my liver enzymes normally spike but then began coming back down when my panc settles down. That's one of the reasons my GI says the spikes are being caused by my panc and not by my liver. If it were AIH causing the spikes in my liver enzymes, putting me in the hospital on IV fluids and nothing by mouth would not have an impact on lowering the liver enzymes. I just had labs done yesterday and my liver enzymes were great. The AST was slightly elevated (36 when it should be below 30), but the ALT was normal at 25. This is fantastic news as it means that my GI will most likely agree to begin lowering my prednisone further. If you have SOD and it is causing the flow of bile to be impeded, it only makes sense that an attack could potentially irritate both the liver and the pancreas and cause both the liver and pancreas enzymes to be elevated. However, you could also have a very severe attack (pain wise) but the bile flow might not be impeded enough to irritate the liver and pancreas enough to raise the enzymes. I think the doctor is taking the right approach by doing the ERCP and EUS. I am by no means a normal case but I do think it is entirely possible for problems with the pancreas/bile duct to cause elevated liver enzymes. Of course, it is also entirely possible that you have both pancreatitis and liver disease, as I do. A liver biopsy is really the only sure way to know if your liver has damage. However, if they can control the attacks you are having and your liver enzymes go down and stay down, I would think a liver biopsy might not be necessary. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 Laurie, The doctors were quite puzzled over me for many months and still are to some degree. I never do things 'normally'! As far as blood tests for the autoimmune hep (AIH), the only one that was positive for me was my ANA, the other anitbody (SMA-smooth muscle antibody) that can go along with AIH were negative. In fact, my ANA was actually negative the last time it was tested, but I am on plaquenil for lupus and my rheumy says the ANA was negative because the plaquenil was negative. Most of the time my ANA is a low positive (1:80) but back in Sep 01, when I'd been off plaquenil for a year, it was 1:360. When you say they did blood work for AIH, I assume you mean the ANA and SMA. If they were both negative, that would make the possibility of you having AIH slim. However, if the ANA was only tested once,that may not be totally reliable. My daughter's ANA has been tested a total of 3 times. It was a low positive (1:80) twice and negative once. She has RA, so the low positive probably had to do with the RA and hopefully she does NOT have lupus. There are actually three main types of autoimmune liver disease. They are AIH, primary biliary cirrhosis (PBC), and primary sclerosing cholangitis (PSC). With PBC, the most important blood test is the mitochondrial antibodies. It is positive in 95% of people with PBC, so if it was negative, it would be unlikely that you have PBC. From what I have read, there are no antibodies that go along with PSC. Here's a link to a great web site on liver disease http://www.gicare.com/pated/ecd0001.htm It says the following about diagnosing PSC The diagnosis is usually made by cholangiography, an x-ray called ERCP that involves injecting dye into the bile ducts. If there is narrowing of the bile ducts, the diagnosis of PSC is confirmed. In my case, prior to the diagnosis of AIH and the beginning of treatment, my liver enzymes fluctuated anywhere from normal a time or two to the high 700s. They were the highest during times of the severe RUQ abdominal pain, nausea, and vomiting. Sometimes my amylase and lipase were elevated, sometimes not. Also, many times the lipase wasn't checked so I'll never know if it was elevated during many of these attacks. Once my old GI finally did the liver biopsy and found out there was a 'little' something wrong with my liver (AIH and stage 3 fibrosis - fairly significant damage) and they began the prednisone for AIH, my liver enzymes were near normal after just 2 1/2 weeks. For the most part, they stay near normal unless I'm having an episode of the RUQ abdominal pain, nausea, and vomiting. After I was diagnosed with AIH, the doctors kept blaming my pain and the spikes in my liver enzymes on the AIH. It was only after I saw the Hep at Vanderbilt and then was put under the care of my current GI that I was told that the pain was ABSOLUTELY not from my liver disease. It is fairly stable with the medication. The pain and spikes in my liver enzymes are from my pancreas, regardless of whether the panc enzymes are elevated. The GI thinks my CP is in part caused by my bile not flowing properly. If the bile is not flowing properly, it can back up and irritate both the pancreas and liver. If the liver is being irritated, your liver enzymes will be elevated. When your liver enzymes are elevated it simply means that at that moment, your liver cells are dying at a faster rate than they should be. Perhaps my liver is quicker to become irritated because I do have liver disease and my liver is already comprimised from the damage. When I do have a panc attack, my liver enzymes normally spike but then began coming back down when my panc settles down. That's one of the reasons my GI says the spikes are being caused by my panc and not by my liver. If it were AIH causing the spikes in my liver enzymes, putting me in the hospital on IV fluids and nothing by mouth would not have an impact on lowering the liver enzymes. I just had labs done yesterday and my liver enzymes were great. The AST was slightly elevated (36 when it should be below 30), but the ALT was normal at 25. This is fantastic news as it means that my GI will most likely agree to begin lowering my prednisone further. If you have SOD and it is causing the flow of bile to be impeded, it only makes sense that an attack could potentially irritate both the liver and the pancreas and cause both the liver and pancreas enzymes to be elevated. However, you could also have a very severe attack (pain wise) but the bile flow might not be impeded enough to irritate the liver and pancreas enough to raise the enzymes. I think the doctor is taking the right approach by doing the ERCP and EUS. I am by no means a normal case but I do think it is entirely possible for problems with the pancreas/bile duct to cause elevated liver enzymes. Of course, it is also entirely possible that you have both pancreatitis and liver disease, as I do. A liver biopsy is really the only sure way to know if your liver has damage. However, if they can control the attacks you are having and your liver enzymes go down and stay down, I would think a liver biopsy might not be necessary. Take care, Quote Link to comment Share on other sites More sharing options...
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