HealingWell
Search Close Search
☰

Possible AIH - In Need of Support

Support Forums
>
Hepatitis
✚ New Topic locked
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/10/2013 8:27 PM (GMT 0)
I am going through the process to try and determine what is wrong with my liver.  A routine blood test showed that my ALT was 208 and my AST was 153.  My liver ultrasound was "unremarkable" and my Hep A, B and C results were negative. I am still awaiting the results of my autoimmune tests, but right now, I cant imagine it being anything other than AIH. 

I am terrified by this possibility and have no idea how this could have happened since I have never had any problems with my liver or other autoimmune issue.  And I had no symptoms at all until the blood tests came back abnormal.  The only major life changing event was that I just gave birth to triplets three months ago, and I had my blood monitored throughout that pregnancy.  Everything was normal until just now with this big spike, so I'm wondering if the pregnancy was my trigger.

I'm just looking to see if anyone here also has AIH and if the disease can be managed and controlled long term.  I want to be here as long as possible for my new babies.

Posted 12/10/2013 8:43 PM (GMT 0)
Hi cookiechick, Welcome to our world... We are patients and loved ones of those affected by various types of liver disease.

I am caregiver to my 64 years partner who is 2+ years post liver transplant who still has Hep C. He is doing pretty well. This forum was a life saver for me...I learned 10 times more here than I did at his appointments.

One of our Moderators, Dany is an AIH patient herself and I'll send her a quick email to let her know you have posted....she is better at the specific lingo for AIH that I am. We have another member, Ann, from the UK who is a great resource. I hope she posts in today as well.

While your liver functions are elevated, they are not nearly as high as some AIH folks. The real test will be how your auto immune test show up. And even then, some folks have mixed test results as they can fluctuate during more and less active times.

It is not unusual for a "flare up" after childbirth. Dany will explain all that including how to cope with side effects of long term medication for AIH if it comes to that.

Again, it is great to see you here. When do you think you'll get the next tests back?

Hugs,
Posted 12/10/2013 8:53 PM (GMT 0)
Well hey there CC. Calm down until you get the full picture. Congratulations on the babies. Wow triplets!! Our people familiar with AIH will give you more information later. You came to the right place. Take a deep breath.


Sandia
Posted 12/10/2013 8:56 PM (GMT 0)
Hi cookiechick

I think you may be jumping the gun a bit by assuming it is AIH. Raised LFTs can be caused by a range of things often temporary.

The autoimmune tests should show more.

But if it is AIH it is a very controllable disease for most people. But it can and usually does strike out of the blue. Basically you have to have a genetic predisposition and then something triggers it. That trigger can be anything or everything - they really aren't too sure!

The treatment starts with steroids then an immunosuppressant is added in that allows the steroid to be reduced or in some people withdrawn completely. It can take a bit of time to find the right meds and doses but once that is done people with AIH can expect to lead a pretty if not totally normal life.

I have had AIH for 14 years now and have to say I live a normal life just swallowing my tablets everyday day and seeing my hep twice a year.

Do let us know if you have any further questions but there isn't a need to panic. I won't tell you not to worry but do try and keep things in perspective. AIH is eminently treatable.

Ann
Posted 12/10/2013 9:31 PM (GMT 0)
Thank you all for your responses. I know I have a tendency to get ahead of myself. It's so hard for me not to. I should be getting the results back from my autoimmune tests by Monday, and I will provide an update when I do. If it is shown that I have AIH, then I am glad that I found this forum.
Posted 12/10/2013 11:21 PM (GMT 0)

cookieChick!

I agree with the others...don't stress out too much.  It's easier said than done and on the very plus side, if it is AIH, it seems to be super duper early!  That is always better for any disease. Stress is no one's friend and even less of a friend to those with autoimmune issues.  It can trigger flares.

Does anyone in your family have an autoimmune disorder?  Generally, one has a predisposition to autoimmunity issues.  You may not have another family member, that you know of, and you may be the first to have developed one.  Sometimes people figure out their trigger.  In any case, if you are diagnosed with AIH, the trigger doesn't matter. 

When will you be having follow up labs done to check your levels again?  You should be having a repeat blood test a couple of weeks to a month following the first elevated tests.

If you search my name or Ann's, you'll see lots of old posts with tons of info.  Ask any questions you have.  The only thing I would advise you to change in your regular behavior is to not consume alcohol until you know what's going on.

And Welcome to HW smilewinkgrin

Posted 12/12/2013 7:06 AM (GMT 0)
I can relate. I have yearly physicals so I believe onset is in that time frame. I took prilosec for gerd, I was going to a boot camp, trying to eat better. I started to feel full quickly, nauseas, went to PCP sept 2013 who referred to GI, blood work showedhigh levels 200 to 300s, higher at some point. I had an ultrasound that said I had a fatty liver (but this changed to not having a fatty liver after liver biopsy), an upper endoscopy that was normal and GI doc said I have NERD and not GERD, all the blood tests ruled out hep a, b, c and all other conditions, doc said I was an outlier, and said to come back in 3 months. My PCP did not agree and I had a liver biopsy that was "unspecific" but looked most like autoimmune hepatitis although I did not have the major markers, so I waited a month after the biopsy for more blood work with no significant improvement and started on 40mg of prednisone, but had changes in vision and other side effects so now on 50mg imuran and 20mg prednisone. I worry about the vision although it has improved but not back to where it was, I plan to ask my gi at appt next week about these things.

I too worry if this is treatable I want to see my daughter grow up, she's almost 6.

I overall feel better and I think im dealing more with med side effects but I am so fatigued in the mornings after taking the meds.

seems like everyone's condition is unique but know I have the same, worries and concerns. I'm trying to keep a positive attitude, I think it helps, mentally and mentally will help physically.
Posted 12/12/2013 8:30 AM (GMT 0)
Hi muddypaws.

I see that you have repeated this post in a new thread.

I have replied to your other post.

Ann

Post Edited (AIHer) : 12/12/2013 2:56:38 AM (GMT-7)

✚ New Topic locked