This is all new to me and I need some advise

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Lucyloo2
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/19/2008 1:53 PM (GMT -7)   
Hi - I have been vaguely diagnosed with auto immune hepatitis by my doctor.  When I say vaguely, she says that my lab test results are what you would see in auto immune hepatitis.  Needless to say, I was surprised but have been feeling so poorly (exhaustion, joint pain, all over aching feeling, left upper abdomen pain) that it had to be something.
 
My question is:  my ANA was positive, my ALT is 135.  I'm having an ultrasound on Tuesday to look at my spleen and liver.  My doctor is saying "let's wait another 4 weeks, re test blood work to see if it gets better".  Meanwhile, I feel awful.  It seems my throid has stopped working and I have hypothyroidism as well that I"m dealing with.
 
Is this a firm diagnosis at this point?  Is it typical for a doctor to want to wait an additional 4 weeks to wait and see before starting treatment?  Shouldn't I be having a liver biopsy?  I'm 52 years old.  Any information or opinions would be appreciated.  

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/19/2008 2:47 PM (GMT -7)   

Hi, Lucyloo, and welcome to the forum!  I don't know much about autoimmune hepatitis (I have hep C), but there are a couple of people on here who do have AIH.  Hopefully, they will see your post and respond.  All I can think is that your doctor is being conservative.  She may think the lab results were an error, or that there is some other reason for the abnormal blood work.  Therefore, she wants to wait and see what the next blood work looks like.  Have you been put on medication for your hypothyroidism?  Untreated thyroid disease can also make a person feel really sick.

Try doing a search of AIH on this forum, and some old posts should pop up.

Good luck to you!

Connie


Lucyloo2
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/19/2008 8:11 PM (GMT -7)   

Thank you Hep 93!  Actually she has already re-run the blood work once - about a week apart from the initial bloodwork just to see if it was accurate - it was.

 

I'll check back to see if anyone else responds.  Like I said, up until a couple of days ago, I had never even heard of something like this.


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 7/19/2008 10:39 PM (GMT -7)   
Hi Lucyloo2,

Welcome to the forum. As an ESLD Hep patient, I have found everyone to be supportive and knowledgeable. It helps to have a community of people who understand the challenges. I hope that if you do have Hep that you will find as much here as I have.

You don't say if your doctor is a specialist. If you are not comfortable with what you hear from any doctor, I recommend that you get a second opinion, preferably from a specialist. In the recent past, much has changed and much has been researched regarding livers. If there is any chance that you have Hep, you should depend on a doctor experienced with liver disease. I hope that liver disease is not a challenge that you will need to deal with.

Be well, John
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 7/20/2008 5:03 AM (GMT -7)   
Hi Lucyloo2 and Welcome to Healingwell

I also have autoimmune hep and have found that diagnosis takes a while. Elevated ANA's indicate an over active immune system so it can indicate other disorders such as Lupus. I know that is one of the first things that was presented to me. It can also indicate infections etc that your body is fighting off or has recently. It doesn't sound like your doctor is trying to put you off on a diagnosis, he may be waiting until your thyroid condition is under control to see if your liver enzymes and ANA's are still elevated before he/she makes a confirmation. I know the waiting is very difficult at least it was for me. It was extremely frustrating to continue to not know what was going on with my body and continued to feel so lousy. The fatigue makes every day routines almost impossible to do and the joint pain makes moving such a chore at times. There is hope though. Medication has helped me tremendously to be able to function better.

Keep us posted on what is going on and good luck.

Luicy

Lucyloo2
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/20/2008 8:28 AM (GMT -7)   

Thank you Luicy - now I get it.  My GP is the one who is running the tests and I couldn't understand why she wasn't acting on this yet.  BTW, I have Kaiser. I know I can be a tad anxious so I need to slow down at least for the next 4 weeks.

I'll check back in after the 4 week re-test. At that time, if it's still AI hep I will ask to see a specialist.

 

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/20/2008 12:59 PM (GMT -7)   

That sounds like a good plan, Lucy!

Good luck and be sure to let us hear from you after the retest!

Connie


DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 7/22/2008 4:29 PM (GMT -7)   

Hi LucyLoo2,

I have had AIH for 1.5yrs. Mine was actually diagnosed quickly because my ALT was 848, AST was 748 and bilirubin, initially, was 9 but climbed to 23.3 in 2 weeks.  So since it was a severe onset...it was a pretty quick diagnosis with blood tests about every 2 days to test for everything under the sun (since I was turning that color  tongue  ).  I was in to see a specialist 1 week after the jaundice and initial blood work was done and had a biopsy at the 2 week mark.  I had started prednisone the night before the biopsy and responded very quickly.

So, I would say, from everything I have read on the illness, not to worry if they are waiting to retest.  It appears that some people remain mild and don't have treatment right away.  If your symptoms change whilst you wait....go back to your GP and either press the issue of seeing a hepatologist or request another blood test earlier. 

Please keep us posted on how you are.  You'll find this a great site with many supportive people.

Take care,


Dany
 
Diagnosed with AIH January 2007
meds: Azathioprine 50mg + Prednisone 5mg


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 7/22/2008 5:13 PM (GMT -7)   
Hello Lucyloo and welcome to HealingWell. I am sorry somehow I miss your post or I'd have welcomed you sooner. I am sorry that you are going through all the stress of getting a diagnosis. But like everyone else has said it takes awhile sometimes.

Dany gave you some great advice along with the others. Do take charge of your health care. And don't be intimidated by your doctor. If your symptoms get worse do not hesitate to get a referral.

By the way Dany glad to see you posting, you were missed. Hope you're doing well.

Good luck with your testing Lucyloo and keep us updated.

Thoughts and prayers...........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


bfleon
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/25/2008 11:30 PM (GMT -7)   
Hi, I want to know what are the treatments for autoimmune hep. Is imuran commonly prescribed? Also, can a person have both lupus and autoimmune hep? Is this disease
life threatening even if it well managed with treatments?

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 7/25/2008 11:41 PM (GMT -7)   
Hello Bfleon and welcome to HealingWell.

There are others who can answer your questions that are dealing with AIH.

You have found the right forum. We have oodles of members who are very educated and helpful here.

Take care and welcome again.............. smurf
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 7/26/2008 5:41 AM (GMT -7)   
Hi bfleon and welcome to Healingwell

I have AIH and can give you information on my specific treatments. I do take Imuran along with a prednisone and urso. The imuran allows me to be on a lower dosage of the prednisone, which can have several complications when taken long term. The urso aids in bile prodcution due to the damage I have in my duct system due to the disease. I understand from reading posts from other AIH patients that prednisone combined with either imuran, celcept, or other immune suppressants seems to be the most common forms of treatment.

I am not sure I can answer your question regarding Lupus and AIH. It seems to be common for people with immune disorders to have more than one. I have both AIH and crohn's disease. My hepatologist has said that it is very common for him to see a combination of immune disorders in his clients. There are so many similarities between Lupus and AIH that I do not know if that would be as common.

Hope this helps with your questions.

Lucy
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