Potential Autoimmune Hepatitis - Symptom Check

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hudsonhawk
New Member


Date Joined Feb 2016
Total Posts : 1
   Posted 2/29/2016 7:59 PM (GMT -6)   
Hey everyone, pardon the long winded post.

Im a 25 year old male, in decent enough shape, maybe a couple extra pounds but not unhealthy by any means. I eat relatively healthy, get an average amount of exercise.

about 14 months ago i started getting these sharp pains in my upper abdomen, typically centered roght below my sternum but sometimes a bit to the right, accompanied by shoulder pain from time to time. Usually either shoulder it isnt typically limited to one side everytime (sometimes both at the same time).

And of course silly me thinking it was purely diet related as ot tended to flare up after eating greasy, junky foods.

But it was weird as it was almost a cumulative experience, ie. Id eat something bad consistently feel perfectly fine for a few days and then have a massive attack (which seems to be almost always at night). And then id feel almost "toxic" inside for the next 24 hours and eventually feel perfect. And this would last for a few days, no matter how terribly i ate. But sure enough a few days would pass and it would happen again. Since then ive been getting attacks roughly every week to 10 days. This past 2 months i reaaally cut down on fats and it seems to help as in i lve only had 2 flare ups, one of which was mild enough to sleep through.

Finally started seeing a doctor back in november. Got my blood tests and it showed LFT levels in the low hundreds (200 and 300 ish). Tested for all viral hepatitis, nothing. Ultra sound and barium swallow with xrays, nothing. Got referred to a GI doctor and got a couple new blood tests, ASMA etc for AIH.

He called me a couple days ago saying that the tests came back, my LFT was elevated to around 500 (i got my blood tested the morning after my latest attack). Hes going to try and get me in with a hepatologist but thinks its probably AIH.

While im obviously stressing about a potential mis diagnosis, i know that something is definitely wrong in that part of my body

So my question to you folks while i wait for an appointment, is regarding symptoms.

I know that the stabbing pain during a flare up is common to AIH as it is with any disease affecting the liver, gallbladder etc. Is it normal in terms of AIH, when i dont have an actual attack, to feel just generally unwell in my abdomen? Especially so after meals (even those with lower fat), and also to have flare ups mainly if not entirely at night? The unwell feeling is characterized by mild bloating, passing gas tends to calm it down somewhat, but it seems to be worse than it was at the onset of pain, whereas id feel like nothing was wrong in between attacks, but now i just feel kind of crappy when food is in my stomach.

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 844
   Posted 2/29/2016 10:31 PM (GMT -6)   
Welcome Hudson,
Have they run gallbladder tests? I'd ask for a HIDA scan. I'd also ask them to check for PBC. What about an abdominal ultrasound? It might be NASH or NAFLD.

I agree that you need to see a hepatologist. They will likely suggest a biopsy unless they run more and definitively find something else.

As per how it feels, everyone is different. When I first fell ill, my symptoms were iced tea colored urine, vomitting and chills. Then I turned full yellow. What is your bilirubin at?

I'd also strongly suggest you abstain from all alcohol.
Do they have any idea when you might get an appointment?
Dany
Co-Moderator - Hepatitis
___________________________________________________
AIH Jan 2007
CMV June 2008
Raynaud's February 2010
Meds: Azathioprine 100mg & Ursodiol 250mg BID

rkayne
Regular Member


Date Joined Jan 2014
Total Posts : 93
   Posted 4/3/2016 11:43 AM (GMT -6)   
AIH is very difficult to find, it hides rather well. Yes, you may need a biopsy. From the sounds of it, one can hope it is just gallbladder related (fats do make that flare up!) My wife has AIH and it was not diagnosed until after transplant, when they autopsied her old liver.

You have concerns, make sure all are heard. I had concerns but she got so sick, so fast that until she was almost dead, most went relatively unheard.

You are well enough now to be your own advocate. Make the use of it since if AIH is caught early, it is easily treated.

Let us know how you are, if this is your diagnosis you can be very helpful with some descriptors of your journey and might help someone else here before it is too late (like my wife.) The one commonality was the 'not feeling well with any food in the stomach.'

And very much, avoid any alcohol. Even in a dessert!

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4794
   Posted 4/21/2016 4:03 PM (GMT -6)   
hhawk...how are you doing?

let us hear from you after your hep appointment.

ml
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.
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