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Does anyone here have any experience with Autoimmune Hepatitis? Can it have an insidious (slow) onset? Is it really rare?
I just had my quarterly visit with my oncologist yesterday (lung cancer follow-up). Thankfully, all my scans were clear. However, he was concerned about the results of my pre-scan blood test. Over the past two years my liver enzymes (specifically ALT and AST) have been slowly rising — from normal to now 1.5x normal. It also happens that I have also been having abdominal symptoms for literally years now (which I had attributed to mild chronic pancreatitis) fat intolerance, very mild nausea, mild diarrhea, bloating etc. I think that the symptoms have been slowly worsening over the years.
None of the scans I have had over the past three years have shown any abnormalities in my digestive organs (they scan that region looking for metastases). Also, previously (in 2017) I had an endoscopic ultrasound to look carefully at my pancreas, liver, gallbladder etc. Everything looked normal, except for the liver, which I believe had evidenced of extremely mild nonalcoholic fatty liver disease (the report read that it was “normal for my age.” )
So, I have the rising liver enzymes in blood tests, and digestive issues, along with normal imaging. Also, for the record, I do not drink alcohol at all. I used to drink about one or two glasses of wine a week until about four years ago when I stopped completely. I am slim and have always been slim. I have a good diet and exercise quite a bit. I do not take any medications, only some OTC supplements. But I have a past history of autoimmune disease (autoimmune inner ear disease/strong positive titer ANA test for one Sjögren syndrome marker without actually having been diagnosed with Sjögren’s since as far as I know I have no symptoms.) Also, I have been on corticosteroids twice in the past three years and each time my digestive issues resolved. Hmmm.
I had just assumed I didn’t have autoimmune hepatitis since I had assumed that the symptoms were more dramatic.
I am trying to decide if I should try to take action on this (and risk wasting my time and money; getting side-tracked on potentially incidental findings; having yet more tests that won’t show or reveal anything) or keep trying to muddle through until the symptoms and/of tests become more frankly indicative of a real problem (it’s best to nip things in the bud, but the more subtle the problem, the more difficult it is to diagnosis).
Also, if I do decide to take action, should I just go to my PCP or should I head straight to my GI, or maybe straight to a GI who specializes in the liver?
Recurrent Autoimmune Hepatitis and De Novo Autoimmune Hepatitis in the Liver Allograft: Clinical and Histopathologic Characterization
Iván A González, MD, Christopher P Hartley, MD, ILKe Nalbantoglu, MD
American Journal of Clinical Pathology, Volume 155, Issue 3, March 2021, Pages 435–445, https://doi.org/10.1093/ajcp/aqaa147
Published: 19 October 2020
"AIH is an immune-mediated hepatitis described in 1950 by Jan Waldenström8-10 and is characterized by female predilection, presence of elevated aminotransferase levels, hypergammaglobulinemia and autoantibodies in the serum, and plasma cell interface hepatitis.8-13 Clinically, AIH is divided into types 1 and 2 based on the expression of serum autoantibodies. Patients with positive antinuclear antibody (ANA) and/or anti–smooth muscle antibody (anti-SMA) are classified as type 1, whereas type 2 is defined by the presence of antiliver kidney microsomal type 1 antibody (anti-LKM-1) or antiliver cytosol type 1 antibody (anti-LC-1).8,13 In the majority of the cases, AIH has an insidious onset with a chronic course.9 However, depending on the series, it can present as acute hepatitis in 30% to 40%10 or 11% to 25%14 of patients, particularly in children and young adults; it can also manifest as fulminant hepatitic failure in rare patients. The standard treatment for AIH is immunosuppression,8-17 which achieves remission in 80% of cases.10 Nevertheless, if left untreated, AIH has a 5-year mortality above 50%.15 In 10% to 20% of cases, OLT is needed14 and accounts for approximately 4% to 5% of the liver transplants in United States and Europe.1 After OLT, AIH can recur with an estimated 1-year incidence rate of 8% to 12% and 5-year incidence of 36% to 68%.4,17 The clinical outcomes of patients with recurrent AIH (RAIH) have been a topic of debate; a recent study showed that RAIH does not affect GS or OS.17"
Because you already have an autoimmune disease then the preliminary testing or screening test normally used, elevated transaminases and a low A/G ratio indicative of high production of antibodies (hypergammaglobulemia) along with a positive ANA then secondary testing for antibodies is indicated. It is best that a GI specialist who sub specializes in liver is best to do followup testing.
It is best to always get a an early diagnosis rather than having complications to deal with later on.
Recurrent Autoimmune Hepatitis and De Novo Autoimmune Hepatitis in the Liver Allograft: Clinical and Histopathologic Characterization
Iván A González, MD, Christopher P Hartley, MD, ILKe Nalbantoglu, MD
American Journal of Clinical Pathology, Volume 155, Issue 3, March 2021, Pages 435–445, https://doi.org/10.1093/ajcp/aqaa147
Published: 19 October 2020
"AIH is an immune-mediated hepatitis described in 1950 by Jan Waldenström8-10 and is characterized by female predilection, presence of elevated aminotransferase levels, hypergammaglobulinemia and autoantibodies in the serum, and plasma cell interface hepatitis.8-13 Clinically, AIH is divided into types 1 and 2 based on the expression of serum autoantibodies. Patients with positive antinuclear antibody (ANA) and/or anti–smooth muscle antibody (anti-SMA) are classified as type 1, whereas type 2 is defined by the presence of antiliver kidney microsomal type 1 antibody (anti-LKM-1) or antiliver cytosol type 1 antibody (anti-LC-1).8,13 In the majority of the cases, AIH has an insidious onset with a chronic course.9 However, depending on the series, it can present as acute hepatitis in 30% to 40%10 or 11% to 25%14 of patients, particularly in children and young adults; it can also manifest as fulminant hepatitic failure in rare patients. The standard treatment for AIH is immunosuppression,8-17 which achieves remission in 80% of cases.10 Nevertheless, if left untreated, AIH has a 5-year mortality above 50%.15 In 10% to 20% of cases, OLT is needed14 and accounts for approximately 4% to 5% of the liver transplants in United States and Europe.1 After OLT, AIH can recur with an estimated 1-year incidence rate of 8% to 12% and 5-year incidence of 36% to 68%.4,17 The clinical outcomes of patients with recurrent AIH (RAIH) have been a topic of debate; a recent study showed that RAIH does not affect GS or OS.17"
Because you already have an autoimmune disease then the preliminary testing or screening test normally used, elevated transaminases and a low A/G ratio indicative of high production of antibodies (hypergammaglobulemia) along with a positive ANA then secondary testing for antibodies is indicated. It is best that a GI specialist who sub specializes in liver is best to do followup testing.
It is best to always get a an early diagnosis rather than having complications to deal with later on.
Thanks for that response. What do you mean by a “low A/G ratio indicative of high production of antibodies?” Is this something that a future blood test would address? It isn’t something that would show up on the standard comprehensive metabolic panel which I just had done?
Thanks for that response. What do you mean by a “low A/G ratio indicative of high production of antibodies?” Is this something that a future blood test would address? It isn’t something that would show up on the standard comprehensive metabolic panel which I just had done?
The Comprehensive metabolic panel includes an albumin and total protein. The total protein is predominantly comprised of albumin and globulins. The gamma globulins is the fraction within the globulins that contains all your bodies antibodies. If one takes the total protein value and subtracts the albumin then what one is left with is the globulins. One then normalizes that with the albumin to end up with the Albumin/Globulin ratio.
A/G = Albumin/(Total protein-Albumin)
Normally that value is one. Less than one can be seen with low albumin levels which can be also be seen in liver problems since the liver produces the albumin or in low protein intake. The globulins and more specifically the gamma globulins are increased with diseases associated with high antibody production such as infections and autoimmune disease. The A/G is lower than one in autoimmune disorders inclusive of AIH and in infections.
The A/G ratio is a surrogate marker for antibody production and usually the first thing noted with AIH because the test is normally acquired with the comprehensive metabolic panel. This is a screening test. An IgG level can confirm high antibody levels although one can still have AIH with normal IgG levels. With that being said the A/G ration can be normal. We are dealing with statistics and probabilities and not absolutes. So most of the time yes but not always exists in medicine.
There are many secondary and tertiary tests can are performed sequentially. The testing strategy depends on the clinical presentation and initial laboratory testing. As mentioned your liver enzymes are elevated and one needs to determine the cause of that elevation which is why you need a specialist. The enzymes are only mildly elevated and they might have an explanation for them and assume a fatty liver. It's unwise to assume the cause of the elevated enzymes without further testing with your medical history. I presume viral hepatitis testing was performed. If the A/G ration low then high on the list would be viral hepatitis and AIH or some other autoimmune disease.
If it were me I would want to have antiliver antibodies mentioned above. Tertiary tests are more invasive and would include a liver biopsy. Get back to your GP if he was the one who ordered all of the tests and see what he thinks about ruling out AIH with blood tests. Just one blood draw. He might have some explanations that you aren't aware of.
With regards to imaging studies they can be good for detecting more advanced stages but with AIH when it first presents it more like chronic viral hepatitis with elevated liver enzymes and later stages then we have more fibrosis and cirrhosis.
Last month I had my blood drawn for a PSA and I noticed they took two tubes of blood and I asked to see the tubes and my doctor had ordered a hepatitis C test. Surprised me because I don't recall him telling me. Pretty funny because I knew it was negative. So the recommendation from the CDC is to have at least one test in your lifetime for hepatitis C.
The Comprehensive metabolic panel includes an albumin and total protein. The total protein is predominantly comprised of albumin and globulins. The gamma globulins is the fraction within the globulins that contains all your bodies antibodies. If one takes the total protein value and subtracts the albumin then what one is left with is the globulins. One then normalizes that with the albumin to end up with the Albumin/Globulin ratio.
A/G = Albumin/(Total protein-Albumin)
Normally that value is one. Less than one can be seen with low albumin levels which can be also be seen in liver problems since the liver produces the albumin or in low protein intake. The globulins and more specifically the gamma globulins are increased with diseases associated with high antibody production such as infections and autoimmune disease. The A/G is lower than one in autoimmune disorders inclusive of AIH and in infections.
The A/G ratio is a surrogate marker for antibody production and usually the first thing noted with AIH because the test is normally acquired with the comprehensive metabolic panel. This is a screening test. An IgG level can confirm high antibody levels although one can still have AIH with normal IgG levels. With that being said the A/G ration can be normal. We are dealing with statistics and probabilities and not absolutes. So most of the time yes but not always exists in medicine.
There are many secondary and tertiary tests can are performed sequentially. The testing strategy depends on the clinical presentation and initial laboratory testing. As mentioned your liver enzymes are elevated and one needs to determine the cause of that elevation which is why you need a specialist. The enzymes are only mildly elevated and they might have an explanation for them and assume a fatty liver. It's unwise to assume the cause of the elevated enzymes without further testing with your medical history. I presume viral hepatitis testing was performed. If the A/G ration low then high on the list would be viral hepatitis and AIH or some other autoimmune disease.
If it were me I would want to have antiliver antibodies mentioned above. Tertiary tests are more invasive and would include a liver biopsy. Get back to your GP if he was the one who ordered all of the tests and see what he thinks about ruling out AIH with blood tests. Just one blood draw. He might have some explanations that you aren't aware of.
With regards to imaging studies they can be good for detecting more advanced stages but with AIH when it first presents it more like chronic viral hepatitis with elevated liver enzymes and later stages then we have more fibrosis and cirrhosis.
Last month I had my blood drawn for a PSA and I noticed they took two tubes of blood and I asked to see the tubes and my doctor had ordered a hepatitis C test. Surprised me because I don't recall him telling me. Pretty funny because I knew it was negative. So the recommendation from the CDC is to have at least one test in your lifetime for hepatitis C.
Thanks so much! I tried the calculator and my A/G ratio is 1.08. So, not clinically significant. Now I am thinking that the rising liver enzymes may have to do with worsening chronic pancreatitis.
Thanks so much! I tried the calculator and my A/G ratio is 1.08. So, not clinically significant. Now I am thinking that the rising liver enzymes may have to do with worsening chronic pancreatitis.
The elevated transaminases can occur with biliary duct obstruction associated with pancreatitis normally in a setting of pseudocyst formation or cholelithiasis (stones). The bilirubin levels and alkaline phosphatase are surrogate markers for biliary obstruction along with the transaminases. I remember one dramatic case in where the pathologist called me over to see and try to identify the flat worms contained within a gallbladder. Apart from the obvious is the stark fact that it can increase cancer risk within the bile duct through the years of irritation.
That's where I and others are at a disadvantage. We don't have all the information in front of us. Limiting the possibilities to probabilities is just not possible for me. I normally rely on the doctor for that rather than asking a long list of questions on my part. The doctor is the one to diagnose, in other words narrow the differential diagnosis and that being elevated liver enzymes. He might re-evaluate his working diagnosis based on presenting symptoms and laboratory findings in the future.
The elevated transaminases can occur with biliary duct obstruction associated with pancreatitis normally in a setting of pseudocyst formation or cholelithiasis (stones). The bilirubin levels and alkaline phosphatase are surrogate markers for biliary obstruction along with the transaminases. I remember one dramatic case in where the pathologist called me over to see and try to identify the flat worms contained within a gallbladder. Apart from the obvious is the stark fact that it can increase cancer risk within the bile duct through the years of irritation.
That's where I and others are at a disadvantage. We don't have all the information in front of us. Limiting the possibilities to probabilities is just not possible for me. I normally rely on the doctor for that rather than asking a long list of questions on my part. The doctor is the one to diagnose, in other words narrow the differential diagnosis and that being elevated liver enzymes. He might re-evaluate his working diagnosis based on presenting symptoms and laboratory findings in the future.
Flatworms in the gallbladder? Eeew.
Thanks again. Yeah, I actually already knew that about elevated transaminases and biliary duct obstruction in the context of pancreatitis (as I have probably spent way, way too long thinking about/researching this issues). I had markedly elevate liver enzymes at one point in 2017, when I had my first series of pancreatitis attacks. My GI was worried, but nothing at all showed up on the six (count them 6!) medical imaging tests I had done on my intestinal tract and the lver enzymes eventually normalized on their own. Also, I remember at one point in my 30s — when I was in the hospital for severe acute diverticulitis, my liver enzymes also came back elevated. I never followed up (like I was told too), but the next time I had a blood test they were normal again.
I know I probably should go to the doctor, but I am deeply convinced that they won’t be able to nail anything down and I’ll just waste another few months of my life going through a variety of more or less invasive testing with little to show for it. Just so sick of seeing doctors. In 2019, believe it or not, I had over 100 medical visits. (I had a cancer of unknown primary. The primary was never discovered, even though what seemed like a gazillion tests were done, and, after seeing something like 7 different oncologists, it was decided that is was “probably” a lung cancer with an occult primary and treated accordingly).
Thanks again. Yeah, I actually already knew that about elevated transaminases and biliary duct obstruction in the context of pancreatitis (as I have probably spent way, way too long thinking about/researching this issues). I had markedly elevate liver enzymes at one point in 2017, when I had my first series of pancreatitis attacks. My GI was worried, but nothing at all showed up on the six (count them 6!) medical imaging tests I had done on my intestinal tract and the lver enzymes eventually normalized on their own. Also, I remember at one point in my 30s — when I was in the hospital for severe acute diverticulitis, my liver enzymes also came back elevated. I never followed up (like I was told too), but the next time I had a blood test they were normal again.
I know I probably should go to the doctor, but I am deeply convinced that they won’t be able to nail anything down and I’ll just waste another few months of my life going through a variety of more or less invasive testing with little to show for it. Just so sick of seeing doctors. In 2019, believe it or not, I had over 100 medical visits. (I had a cancer of unknown primary. The primary was never discovered, even though what seemed like a gazillion tests were done, and, after seeing something like 7 different oncologists, it was decided that is was “probably” a lung cancer with an occult primary and treated accordingly).
Oh boy, sorry to hear about your history and challenges in life. There's sometimes no easy answers. As far as the pancreatitis goes, many years ago early in my career I had too much to drink one night and ended up with a stomach ache that kept nagging at me and so I went to a small a local hospital ER that had a flat rate cheap promotional for services. They did blood work and urine work and then said I had pancreatitis and that I needed to be admitted and they were going to put in a tube. I said no thank you and left AMA. I immediately went to my place of work which was a large teaching hospital and saw the ER doctor there. They did all the blood work (WBC, calcium, amylase, lipase) and everything was normal and said I didn't have pancreatitis. The previous place tested my urine for amylase and said it was elevated but they did not do a creatinine level that normalizes the results. I was dehydrated and so the urine was concentrated and everything being measured was thus also be concentrated and high. I used the blood level and the urine level to determine the fractional excretion of amylase and it was normal. I didn't believe it was pancreatitis and the ultrasound to check for pseudocyst was all normal. Down the road I ended up with gastrointestinal symptoms and gastritis which was more than likely the cause by my drinking. I stopped drinking many years ago after that incident which has been about thirty years or so.
There's a big difference between chronic pancreatitis and acute pancreatitis in terms of laboratory markers especially amylase and lipase which are more organ specific. Blood testing in general is more amiable for acute pancreatitis rather than chronic pancreatitis.
It looks like with all of your workups that you are getting an education about being proactive and doing so responsibly so and so I encourage such active participation. It optimizes options and outcomes because you are part of the decision making. You are the one who has to deal with it and thus by all means ask questions of your doctors.
Oh boy, sorry to hear about your history and challenges in life. There's sometimes no easy answers. As far as the pancreatitis goes, many years ago early in my career I had too much to drink one night and ended up with a stomach ache that kept nagging at me and so I went to a small a local hospital ER that had a flat rate cheap promotional for services. They did blood work and urine work and then said I had pancreatitis and that I needed to be admitted and they were going to put in a tube. I said no thank you and left AMA. I immediately went to my place of work which was a large teaching hospital and saw the ER doctor there. They did all the blood work (WBC, calcium, amylase, lipase) and everything was normal and said I didn't have pancreatitis. The previous place tested my urine for amylase and said it was elevated but they did not do a creatinine level that normalizes the results. I was dehydrated and so the urine was concentrated and everything being measured was thus also be concentrated and high. I used the blood level and the urine level to determine the fractional excretion of amylase and it was normal. I didn't believe it was pancreatitis and the ultrasound to check for pseudocyst was all normal. Down the road I ended up with gastrointestinal symptoms and gastritis which was more than likely the cause by my drinking. I stopped drinking many years ago after that incident which has been about thirty years or so.
There's a big difference between chronic pancreatitis and acute pancreatitis in terms of laboratory markers especially amylase and lipase which are more organ specific. Blood testing in general is more amiable for acute pancreatitis rather than chronic pancreatitis.
It looks like with all of your workups that you are getting an education about being proactive and doing so responsibly so and so I encourage such active participation. It optimizes options and outcomes because you are part of the decision making. You are the one who has to deal with it and thus by all means ask questions of your doctors.
Interesting story. It’s nice to have to the medical knowledge to effectively advocate for yourself/make wise decisions. I never used to be interested in medicine. It wasn’t even a field I even considered going into, but I have gotten much more interested over the years because I have had to advocate for myself. I have also left the hospital AMA, and guess who was right? One of my pet peeves is that if the patient happens to be right, you hear “well, you got lucky!” And if the doctors are wrong, you hear: “Well, there are always risks/unknowns/blah blah blah … “
Anyway, my oncologist requested that they test my already collected blood sample for lipase and amylase and I just got the results on the patient portal. They are both well within normal range. But as you suggest, lipase and amylase levels aren’t a good indicator for chronic pancreatitis.
Jill- You're much more likely to have one disease accounting for multiple signs & symptoms than to have two separate (or in your case, third or fourth) diseases.
Elevated ALT & AST are non-specific. All cells dump them in to the blood when injured, so elevations are not necessarily indicative of liver problems. The general chem profile doesn;t differentiate among the sources of these enzymes. More speicific tests can be done. If there's also abnormal bilirubin levels, then it's more likely the liver, but again, not necessarily - liver. pancreas and blood problems could also give elevations of both.
That A/G ratio thing is an interesting observation, but useless clinically. It's not the thing that will decide the diagnosis one way or the other, and can't be used for diagnosis, prognosis or to monitor progress.
Fatty liver alone could cause elevations of AST & ALT to that (1.5x normal) degree. Hepatits usually involves elevations of 2-10x normal, for perspective. (We don;t usualy do chem profiles while a pt has a simple viral infection, but if we did by chance, we may well see similar results.)
With normal amylase & lipase at this point, it's unlikley that the pancreas is the culprit. If blood counts are normal, then we can also discount hemolytic anemia (often seen in ca /autoimmune diseases) as the source.
At this point, periodic monitoring of the chem profile is called for. If enzyme levels or bilirubin rise, then viral infection needs to be ruled out (particularly if you've had transfusions). I don;t think they'd recommend biopsy of the liver unless enzyme levels climb consderably. Mets, of course, need to be considered and evaluated first with a CT/MRI/PET scan--Pet scan best with your history.
Auto- immune diseases are clinical diagnoses-- that is, based on signs & symptoms, not blood tests. Labs are used to help characterize the diagnosis and sometmes monitor progress.
K.I.S.S.
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