Autoimmune Hepatitis Blood Tests

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sweetmama
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 9/12/2008 3:11 PM (GMT -7)   
I am being treated for AIH even though the doctor said I don't have the classic symptoms. I suspect the use of Avelox (a floroquinolone antibiotic) and Augmentin (another anitbiotic) that I took for a sinus infection in March, but the hepatologist doesn't necessarily agree. I saw him for the first time two weeks ago and am on 40 mg Prednisone and 50 mg Imuran daily. Tolerating it just fine, but can detect weight gain creeping up and am having trouble sleeping. Blood lab work is scheduled for next week. Does anyone out there know what autoimmune measurements to look for on the report? I know all about the ALT and AST levels (mine were in the 5,000 range in April!), but I'm wondering what else to look for as far as autoimmune markers. The hepatologist said he would be looking at something called "f-actin" (?) and one other. I haven't been able to find any information about it. I am trying to educate myself about AIH, so if anyone knows about this, please help. The reason I want to know is this: the hepatologist is not a very good communicator. The office is very slow getting back to me. The lab results will be sent to him, but I'm going to have them sent to me also. I can't wait around for days not knowing. The doc doesn't seem to have a problem with making me wait and wonder and worry, so I'm taking control!! BUT--I need your help.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/12/2008 3:29 PM (GMT -7)   

Sweetmama, I don't have AIH, but I was able to find some info for you.  F-actin is a smooth muscle antibody.  It is part of lab diagnostic testing in AIH.  Hope this helps a little.

Hugs,

Connie


sweetmama
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 9/12/2008 3:50 PM (GMT -7)   
Thanks. Now I need to find out what "normal" is for F-actin, and also need to find out about the other one that I didn't have time to write down when the doc was talking so fast. I have been on the HealingWell web site all afternoon searching for info--went to every page. Someone suggested a link to a "liver tests and procedures" site, so I might be able to find it there. Smooth muscle antibodies? What the heck is that about? I'm a blonde, and this is all too much information for my feeble brain! tongue
Sweet Mama


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/12/2008 3:57 PM (GMT -7)   

I found the info on F-actin by searching on Google.  Try that.  www.google.com

C.


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 9/12/2008 4:31 PM (GMT -7)   
Hi Sweetmama and welcome to healingwell.

I too have autoimmune hep and smooth muscle anitbodies are a marker in determining the disease. Honestly I do not know what the nromal range is for this but as it goes into remission the number should lower. According to my hepatologist they will be present as the disease does not go away or "cured" It would be helpful to get a printed copy of your tests results. On them there are ranges of normal for all the enzyme levels and then what your levels are, so you may be able to get a more accurate idea of where it is falling for you. Once your levels decrease they will probably lower the dosage of prednisone that you are taking. Currently I am down to 5mgs daily along with 50 imuran. The weight gain you are experiencing now will stop and your weight will be more normal as they decrease the dosage. Hope this helps. Please keep us posted.

Lucy

sweetmama
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 9/12/2008 6:06 PM (GMT -7)   

Thanks, Lucy. I read a bunch of your posts today when I was going through the site. I will definitely get a printed copy of the labs. I've been holding up OK, but just now this minute had a little breakdown. Very first time I've shed tears over this. I'm trying to be brave and pro-active, but it's very depressing and LONELY. My husband just came up and hugged me and said, "it's all right," but he just doesn't know what is going through my mind right now. (Of course the prednisone doesn't help my mental state either!)

I know about the enzyme levels and all that--it's the antibodies I'm interested in. My GI doc said the ALT and AST would fall dramatically if I do indeed have AIH. So, I know what to look for there. I read that if significant amounts of ASMA (that's the F-actin, I think) and ANA (Anti-nuclear antibodies) are in the blood, that the most likely cause is AIH. I'm just interested in what the "significant amounts" are! 

The hepatologist I'm seeing at Vanderbilt University Hospital said I don't have all the signs of AIH, but treatment needed to start to prevent further scarring of my liver. So, we are treating AIH even though we aren't really sure.

So you are just maintaining right now? I mean, are you considered to be in remission? How long have you had AIH? Do you know what caused it? I have no autoimmune problems in my family, and have been healthy all my life.


Sweet Mama


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 9/14/2008 2:24 PM (GMT -7)   
Hi Sweet Mama

No they do not know the cause of my immune problems. Although it can run in families there does not seem to have to be a direct link to parents or siblings. The assume that at some point something caused my immune system to kick in and it never kicked out. I was diagnosised with AIH officially a little over two years ago. I also did not have all the markers that were needed for a quick diagnosis but as I respended to medication they agreed that this was the problem. I am not considered in remission at this point as my ASL and AST and alkaline phosphate and direct bilirubins are still slightly over high normal range. Although I am maintaining without extreme flucuations at this point.

The ANA levels you are referring to is specific to your immune system. I believe that it is considered high if the number is above 21 or 22. That should be a marker that your immune system is highly active. I am realy glad that they have started you on medication so quickly. It took nearly two years before they finally started mine and currently have been diagnosised with cirrhosis due to scarring.

I completely understand what you mean the prednisone effecting your mental state. But that wll change as they are able to lower it. Just keep your chin up. I have always described this as like a roller coaster ride. One day good another bad but always constant and sometimes scrary. This is a wonderrful place to express your feelings.

Lucy

LadyL
Regular Member


Date Joined Jul 2008
Total Posts : 20
   Posted 9/15/2008 9:08 AM (GMT -7)   

Sweetmama,

You might want to try to go to www.aasld.org - it is the american associate for liver disease website.  Now my doctor at the Cleveland Clinic told me about this website. Some of the information may be high level and over your head but at the same time, it breaks down the disease.  If you go to practice guidelines, it has information about autoimmune liver diseases there.   I also just sort of googled liver enzyme ranges and things like that so that I have a better understanding of my test results when I receive them.

LadyL


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 9/15/2008 5:37 PM (GMT -7)   
Lady L

I also go to Cleveland Clinic to see my hepatologist. They are wondeful there.

Lucy

LadyL
Regular Member


Date Joined Jul 2008
Total Posts : 20
   Posted 9/18/2008 10:47 AM (GMT -7)   

Lucy,

Do you live in Cleveland? I live in Columbus and have a local doctor as well as the doc at the Cleveland Clinic.


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 9/19/2008 5:30 PM (GMT -7)   
Lady L

No I don't live in Cleveland, I am in Huntington WV and my gastro doc here referered me to my hepatologist at the Clinic, by my gastro doc that works here at the universtity hsopistal, as honestly they were having dificulty diagnosising me as I did not have al the markers. Cleveland is like five hours from here so it is a long way o drive for an appointment, but has been totally worth it. My doc in Cleveland also discovered I had crohns while running tests that I do not have typical sypmtoms of either. So i am totally appreciative of his expertise and communications skills. Columbus is about a two and half hours away from where I am living here in WV, so we are nearly neighbors. Certainly not looking forward to the winter weaher we get here. I freeze all the time anyway so really do not need the added bonus of actually temps beginning to drop.

Lets hope for a mild winter.

Lucy

LadyL
Regular Member


Date Joined Jul 2008
Total Posts : 20
   Posted 10/10/2008 11:31 AM (GMT -7)   
Sorry for my delay in response, I haven't been on the website in a while. I only went to the Cleveland Clinic once back in May for a 2nd opinion and it was the same as the first.  My lab results have come back improved so I am really happy about that.  They are just trying to figure out the right medication to put me on as I can't be on the prednisone much longer and the Imuran makes me really sick. 
 
my sinuses have been giving me the blues and I'm fighting with a sore throat. It makes me a bit nervous because i got a sore throat which led to strep which led to jaundice etc.  So i just don't want to go down that road again.
 
I hope that this winter is mild and we don't have to suffer through the cold and snow!  The blizzard we had last year was enough!
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