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autoimmune hepatitis?

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Posted 5/21/2008 3:57 PM (GMT 0)
my doctor did a test on me last year which showed a positive ANA and a high alkaline phosphatase. i have tried to do some research and found that it could maybe be autoimmune hepatitis, does anyone on here have that? my doctor didnt mention the alkaline phosphatase(i saw it when i looked at my chart) to me only the positive ANA and is thinking lupus. should i say something to him and make it seem like i am second guessing him?
Posted 5/21/2008 4:51 PM (GMT 0)
Loni, hi and welcome to Healingwell. Labs are tricky business and elevated levels can mean different things so don't get too excited. I would suggest that you ask your Dr to test you for hepatitis if you suspect that you may have it. You have to remember that you are in charge of your own care. You are paying him/her to listen to your complaints, test you for certain illnesses or diseases, evaluate thos tests and treat you. It's not the other way around so don't be afraid or embarrassed to ask questions. Good luck
Posted 5/21/2008 5:46 PM (GMT 0)
Thanks Shelly! I do forget sometimes that they work for us. They have a way of making us feel like we know nothing and they are gods!!

Posted 5/21/2008 9:09 PM (GMT 0)
Hi!

I have AIH.  I was diagnosed in January of 2007.  My ANA showed up positive in 2003.  I was having joint pain in my hands.  So I was referred to a rheumatologist.  Annually they monitored me for lupus/RA/connective tissue disorders as the only thing that came back positive was the ANA.  They had run different antibody tests specific for these diseases too, all were negative.  Perhaps had someone started checking my LFT's (liver function tests) sooner, something would have shown up, who knows.  In retrospect, I would have asked if I had even known about autoimmune hepatitis.  I was diagnosed after having a bout with nausea and vomitting followed by jaundice.

My advice to you, ask the doc to run other antibody tests for the connective tissue disorders and check LFT's.  Then if something else is positive, they'll know which way to go.  I was also told that sometimes people have a positive ANA and it never develops into anything else.

Good luck and take care!

Posted 5/21/2008 9:25 PM (GMT 0)
thanks Dany! my next visit is in 3weeks so i will ask about the LFT's. is nausea always a part of it for you or was it that one time period? do you know alot of people with AIH?

Posted 5/21/2008 11:26 PM (GMT 0)

Hi Loni,

The nausea went away as soon as the jaundice set in for me.  Everyone seems to have different experiences.  There are a few people on this site with AIH.  I have my next appointment with the hepatologist next Tuesday.  Haven't seen him in 6 months...longest stretch!  I had bloods done 3 months ago and they were fine.  Hopefully these hold up too.  I have been having a lot of right upper quadrant pain these last few weeks along with a feeling of fullness when I lean that way....fingers crossed.

If you put AIH in the search bar, old posts should come up.  There are 2 groups on Facebook, if you are on there too.  Surprisingly with a decent amount of members.  In one of the posts, someone had asked how everyone had been diagnosed so you can read different stories.  I'm sure you'll find a lot on here too.  On here people talk about specifics to side effects and emotional issues as well...it's a really nice site and I was so happy to have found it.  I find myself on here less when things are going really well but it's so nice to know people are here for you when you aren't coping or need advice from those who really understand.

I wish you well and hope to hear how your next appointment goes.

Posted 5/22/2008 3:14 AM (GMT 0)
Hi--
I don't post much here because I've been diagnosed with NASH and autoimmune disease, but finally disgusted with my health and being faced with taking strong immunosuppressants that could be hard on my liver and potentially kill me or reactivate liver disease, I went to Mayo hepatology. They worked with rheumatology to run very specific state of the art and sensitive tests for antibodies and other markers and it's looking like autoimmune hepatitis. The sad part for me was that, I'm now told, I test either false positive for HCV antibodies or somehow fought it off long ago, and went through interferon probably with autoimmune hepatitis, according to my pretreatment biopsy. Because I went through interferon therapy before they had a test for the virus, they looked at lfts and HCV antibodies.

I now realize it is very important to get a really good diagnosis and make sure they are running the right tests and the best of hepatologists that were outside Mayo did not run the stuff they ran here and did not get the sensitivity in results that they did at Mayo. They did a really good job.
Posted 5/22/2008 1:02 PM (GMT 0)
Thank you all for your comments. I put AIH in the search, i am trying to make a list of lab test that need to be ran to either confirm or deny AIH. The problem is I not only have an HMO but my docotor doesnt seem to remember being alive yestarday lol! So I have to pretty much do all of my stuff on my own. It is crazy one day he will act like my blood work is the end of the world and the next he cant remember even ever seeing me. Maybe I should request some lab work for him lol lol lol!!

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