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    Old 03-15-2014, 08:32 PM   #1
    retired521
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    Autoimmune Hepatitis in Males

    Hi all, first post here.

    I am a 67 year old male and my doc is almost sure I have AIH or AI liver disease from the results of all the blood work he has done. I am going to a gastroenterologist/internest. I just had a liver biopsy done to confirm AIH or AI liver disease, which I think are the same thing so he can give me something to control it, more than likely Prednisone. But he has to make sure first, that is the reason for the biopsy and to see the amount of cirrohis, if any, is there. The CT scan was uncertain of cirrhosis he told me even though the hosptal I went to said my liver had a cirrhosis appearance.

    I have no symptoms except light brown stools from the elevated liver enzymes. Besides that I feel fine.

    This was all detected when I went to the emergency room for a kidney stone, which I passed. The CT scan they took revealed incidental findings which include the cirrhosis appearance.

    Ok, here are just a few questions. 1st AIH is more prevalent in females than males, but in the elderly, I read both sexes can acquire AIH. 2nd it is a rare disease in both sexes.

    The only other implication that I do have it, is that an older brother, now deceased, had lupus, which again is rather rare in males, but he did have it.

    Like I said all the blood work tends my doctor to believe I have AIH. He has ruled out liver cancer or tumors.

    My liver biopsy results should be ready sometime next week.

    The fact that I am asymptomatic (except for the tan colored stools) has me very confused.

     
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    Old 03-18-2014, 12:00 PM   #2
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    Re: Autoimmune Hepatitis in Males

    Hi & welcome. I actually think that your pale stools and elevated bilirubins are symptoms of something going on with your liver, so it makes good sense to me that your doctors & you are working thru this in careful stages.

    Do you know which particular blood labs raised the possibility of AIH? Were they specialty labs like ANA, and more specific tests for the autoantibodies associated with AIH (SMA or AMA, anti-smooth muscle and anti-mitochondria respectively)? Also, were hepatitis A, B, and C definitively ruled out? (I get copies for myself, if I were you, to keep in your personal files.)

    I only ask because things other than an autoimmune condition can certainly cause liver labs to elevate. I think a common culprit is "fatty liver", which if left unaddressed, can progress to cirrhosis, which in turn raises odds of liver cancer. (I'm very glad that was ruled out already, btw!) Also, certain meds, including some very common OTC's.

    I don't know whether the fact that your brother had lupus raises your odds of AIH at your age. (No insult intended, I'm quite close in age!) I guess I'd wonder why NOW, not earlier---but only a specialist could speak to that. Yes, AI's can cluster in families, but not every family member gets one, not by a long shot.

    Did your biopsy results come back? I hope so & that you've gotten clarity. Let us know how you're faring, when you have the time. Wishing you luck, Vee

     
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    Old 03-18-2014, 06:07 PM   #3
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    Re: Autoimmune Hepatitis in Males

    Thank you for posting in response to my question.

    Well here are my numbers:

    Alph-Fetoprotein (AFP) Tumor Marker 4.0 Well below Ref Range

    Amylase 124 High

    ANA W/International Units & Titers <7.5

    ANA-IFA Positive (Doc is not sure if this is Positive or not)

    Actin Antibody IgG (Smooth Muscle) 99 High

    Hepatitis B&C Non-Reactive

    CA 19-9 35 Normal to High Normal

    CEA 3.3 Normal

    Biliruben is in normal range

    AST 53 High

    ALT 57 High

    LIPASE 242 High

    Platelets 66 Low

    All other blood work and blood counts are normal.

    The above my doctor tells me these numbers are a good case for AIH or AI Liver Disease.

    Still waiting for results of Liver Biopsy (been 6 days already)

    He does say I have some cirrhosis, but needed the biopsy to see how bad. I am not a drinker, never had been. I smoked cigarettes though, but gave them up in 1998.

    So far he ruled out, liver cancer, NAFLD, or fatty liver.

    I am still asymptomatic except for the light tan stools.

    Thanks again for your interest.

    Last edited by retired521; 03-18-2014 at 06:09 PM.

     
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    Old 03-19-2014, 03:35 AM   #4
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    Re: Autoimmune Hepatitis in Males

    According to your labs, I would have to agree with your Dr. I also think you may have some autoimmune pancreatitis since amylase and lipase are high. Platelets being low are a sign of autoimmune disorder as well, but the anti-smooth muscle being + is the real key test. Fortunately your liver enzymes are minimally elevated, so that is good. It is also good that you have no pain, which I would expect more from the pancreas inflammation rather than from the liver. Is there an alkaline phosphatase in your labs? If elevated, could indicate blockage of bile in the ducts, like from gall stones. Pale stools are a little unusual without some level of bile blockage, usually from stones. Dr may want to order a HIDA scan or ultrasound to see if bile ducts are dilated or obstructed. There is a phase in men beginning about age 60 where autoimmune conditions, including lupus, can surface. So your brother having lupus and now this for you is not terribly surprising. The ANA (IFA) is +, but that is non-specific. Dr may want to do some other antibodies for lupus, like anti-dsDNA and anti-Smith, as AI hepatitis and pancreatitis can be manifestations of lupus, which could be the underlying disorder since platelets are affected too. The good news is that men who get lupus at this age usually have a more benign course than men who get it in their 20-30's. Usually, biopsy results are ready in a week. I would call Dr by Friday to ask about results.

     
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    Old 03-19-2014, 06:13 AM   #5
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    Re: Autoimmune Hepatitis in Males

    Hi. I forgot to ask if you take any meds, including OTC's? If you do, there's another "subset" of lupus that might be worth asking about: drug-induced lupus erythematosus (DILE). It tends to occur in people aged 50-70, the age bracket in which people simply take more meds, and it strikes males and females equally. Its hallmarks are positive ANA, anti-histone, and anti-ss-DNA (that's single-stranded, as opposed to the double-stranded kind associated with "classic lupus"). DILE can affect the liver, however I don't know if anti-SMA is ever seen in it (sorry).

    Regardless, even if DILE is deemed not worth investigating, I think you should review with your doctors all meds you take---just so you don't take anything that could aggravate your already aggravated liver. I hope you get your results & clear answers soon. Best wishes.

     
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    Old 03-19-2014, 06:22 AM   #6
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    Re: Autoimmune Hepatitis in Males

    Hi Ladybud thank you for your reply.

    They did take an Alkaline Phosphate test and it was normal, 43 IU/L, which in the labs normal ref range of 40-129 is low normal.

    The low platelets has been an ongoing thing that my regular doctor has been following, but it wasn't until I had the kidney stone, which I passed, in early February, that these incidental findings showed up on my CT Scan.

    Besides the AST and ALT levels being elevated, all my Comprehensive Metabolic Panel A.M.A. results are within the normal range.

    My Prothrombin Time (PT) with NR is 12 seconds which is ever so slightly elevated to the norm. This lab normal range is 9.3 to 11.9 seconds. I am assuming this is the result of the low platelets.

    I asked the RN when I had the liver biopsy done how long would it take to get the results from my doctor. She told me normally it takes 2 days after the biopsy is done. I had it last Thursday. Which means he should of received the results yesterday, Tuesday.

    The liver biopsy was done mainly to confirm the extent of cirrhosis because the CT Scan stated 'cirrhosis appearance" in the results. My doctor also wanted to liver biopsy done to confirm AIH so he could treat me and give me something for it, that were his exact words. If I do not hear from him by Thursday, tomorrow, I will surely give him a call.

    I had an ultrasound done on my liver about 12 years ago for similar findings in a blood test. But my doctor at the time said all was good. Maybe I should of kept a more closer watch and have more frequent blood tests done.

    Thank you for the clarification that it is not that rare that men can get this and not only females because that is what I have finding when reading up on it.

    I have also found out that not every test has to be out of range and vice versa to confirm AIH.

    Lupus I have read has other symptoms a little different than AIH.

    Again, I am mostly asymptomatic for anything. My appetite is normal and I sleep fine through the night.

    Thank you again for your insight.

     
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    Old 03-19-2014, 05:22 PM   #7
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    Re: Autoimmune Hepatitis in Males

    Quote:
    Originally Posted by VeeJ View Post
    Hi. I forgot to ask if you take any meds, including OTC's? If you do, there's another "subset" of lupus that might be worth asking about: drug-induced lupus erythematosus (DILE). It tends to occur in people aged 50-70, the age bracket in which people simply take more meds, and it strikes males and females equally. Its hallmarks are positive ANA, anti-histone, and anti-ss-DNA (that's single-stranded, as opposed to the double-stranded kind associated with "classic lupus"). DILE can affect the liver, however I don't know if anti-SMA is ever seen in it (sorry).

    Regardless, even if DILE is deemed not worth investigating, I think you should review with your doctors all meds you take---just so you don't take anything that could aggravate your already aggravated liver. I hope you get your results & clear answers soon. Best wishes.
    Thank you for the update.

    I take no prescription drugs.

    I take a baby aspirin every two days. I take pharmacuetical grade Omega 3 fish oil 5 times a week and 3000 mg sublingual vitamin B12 with folate almost everyday. I was told to take the B12 because of the Bells Palsy I had two years ago.

    That is it. Occasional and I mean very occasional I will take regular strenght Tylenol for aches and pains if they arise. The most I will take is 2 regular strength Tylenol, 650 mg. Usually though 1 tablet works just as well, 325 mg.

    Hopefully I will get the results of the liver biopsy tomorrow or at the latest Friday.

     
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    Old 03-19-2014, 05:30 PM   #8
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    Re: Autoimmune Hepatitis in Males

    Interesting that you had Bell's palsy, as that sometimes accompanies autoimmune disorders. All in all, your history and labs are very consistent/classic with AIH, with perhaps a touch of AI pancreatitis thrown in. People who are asymptomatic tend to do better than those who are symptomatic, especially if the cirrhosis is at early stages, which your biopsy will clarify.

     
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    Old 03-21-2014, 12:13 PM   #9
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    Re: Autoimmune Hepatitis in Males

    Recieved partial results of liver biopsy today.

    I was told there is cirrhosis, but liver biopsy does not show what is causing it as well as the blood tests.

    My biopsy has to be sent out to a hospital in New York City to determine what is causing the the cirrhosis. He did say it is an unusual form of cirrhosis.

    The biopsy he said has kind of ruled out autoimmune hepatitis, but still is uncertain until he gets the details of the more thorough testing of my biopsy.

    Until I hear from my doctor, I am still wondering what is going on.

    Except for the light colored stools, I am still asymtomatic.

    He did say it was Grade 4 cirrhosis which means pretty good inflammation going on.

    I was confused about grading and staging of cirrhosis, but found out what "grading" means.

    Thanks all for your concerns. I will let you know what is going on when I hear from the doc, again.

    Last edited by retired521; 03-21-2014 at 12:14 PM.

     
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    Old 03-21-2014, 01:43 PM   #10
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    Re: Autoimmune Hepatitis in Males

    I'm sorry you didn't get a definitive answer, but it's good to hear that your test is getting a second expert read. Prudent doctors do what yours did, call in more troops, so that part is definitely good. Sending best wishes.

     
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    Old 03-21-2014, 03:11 PM   #11
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    Re: Autoimmune Hepatitis in Males

    Looking at my Child-Turcotte-Pugh (CTP) score of 6, which is stage A cirrhois even with all the inflammation has me and the doc wondering what is causing the inflammation and how long this has been going on since I haven't any severe symptoms.

    Puzzling.

     
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    Old 03-22-2014, 03:35 AM   #12
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    Re: Autoimmune Hepatitis in Males

    Hi. This is out of left field, but I just read something about Celiac disease that made me think of you. (A friend is being evaluated for it.) Anyway, within it, a certain percent of sufferers also have elevated liver enzymes, AIH, etc. That might be an interesting nexus, in that you also cite light tan stools (not sure how long that's been going on?); also low (almost out-of-range) Alkaline Phosphate, and low B-12 and Folic Acid, both of which can also can occur in Celiac.

    Re low platelets, which your GP had been "following", did he look for the underlying reason? There are 3 seemingly broad categories of reasons: decreased platelet production (various viruses incl. hepatitis, low B-12 and folic acid, etc.); platelet destruction (autoantibodies, vasculitis, etc.); and splenetic sequestration, wherein platelets get "stuck" in the spleen due to advanced liver disease. (I say "etc." b/c those lists aren't comprehensive.)

    So I'd probably ask about Celiac if it hasn't been discussed yet (can't hurt). I sure hope your specialists can make more sense of this soon. Bye, Vee

     
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    Old 03-22-2014, 09:20 AM   #13
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    Re: Autoimmune Hepatitis in Males

    Vee's theory is interesting, and the associations with celiac disease are numerous. Worth a look into, as first screening for celiac is simply blood tests, and treatment is dietary-avoidance of all gluten.

     
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    Old 04-09-2014, 05:58 PM   #14
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    Re: Autoimmune Hepatitis in Males

    I am back, took almost 4 weeks since I had the liver biopsy done to get the results from Mt. Sinai Hospital in NYC since the my specialist and his radiologist could not figure out what was causing my cirrhosis. The biopsy had to be sent out.

    Nothing positive came back from Mt. Sinai and my doctors exact words were "probably autoimmune hepatitis".

    He cannot treat me yet until I have other tests done. I need an colonoscopy and an endoscopy. I am not thrilled that I have go through these tests. He can't treat me for the autoimmnue hepatitis until these tests are done. He wants to check my pancreas and the enlarged lymph nodes that showed up on my CT Scan and rule out anything going on in small and large intestines, plus the colon.

    The only symptoms I have right now are light tan stools that are never formed, just mushy (trying not to be gross), but there many reasons to have this symptom, but most likely cause by my liver, gall bladder, bile ducts or even my pancreas.

    At least he said nothing was urgent or had to have these tests done immediately, which in a way is some sort of relief. I have an appointment on April 25th with my specialist and to outline what we will do next.

    Just wanted to update. Thanks all.

     
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    Old 04-14-2014, 07:48 AM   #15
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    Re: Autoimmune Hepatitis in Males

    Sorry you need an endoscopy & a colonoscopy to rule other possibilities out, but I do think it makes sense to do both sooner rather than later. I had so many GI tests in my 20's & 30's that I became totally averse to any more, which wasn't clear thinking on my part, really. When I finally did another colonoscopy a few years ago, it was so easy (when compared to the bad old days) that I quickly realized that I shouldn't have dragged my feet for so long... Thus my new theory about a colonoscopy is, if I can do it, anyone can! I hope your 4/25 appt. goes well, and that your doctor & you devise a plan that gets you further ahead. Hang in there and good luck, Vee

     
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