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I'm told I have AIH but my liver panel is perfect. Can anyone give their experience?

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Posted 10/22/2017 1:35 AM (GMT 0)
Hello. My name is AndLo. I'm new to the forum. I have been rescently told by my rheumatologist that I have Autoimmune Hepatitis and I am being referred to a specialist in the Bay Area in a couple weeks. I'm not very surprised to have an autoimmune issue due too all my symptoms but never thought my liver! Here is a little background on me. I'm a 36 yr old, married, mother of 3 girls. I am mildly obese and non active. I'm a full time employee in medical field.

Symptoms: chronic back pain for at least 10 months everyday; also hips now. Joints flare in hips, back (mild arthritis), hands, feed, arms, legs. Mild tingle in face. Lots of tingle in hands and feet; fall asleep. Fatigue everyday. Diarrhea everyday for at least three months, bloating, some edema to hands and feet. Itching. Restless legs.

Labs: CBC - normal, CMP- now normal ( my electrolytes go up and down due to diarrhea), PT/INR- normal, ESR- normal, u/s- wnl

WHY MD CONCERNED- actin sm igg 38 high and ANA 1:320; my CRP keeps rising and current test is 1.139

From reading my post , I'm looking for input on what may be going on??? My guess possibly colitis with autoimmune. What do you think will be the next step?? Why would CRP go up but not ESR?

Thank you in advance.
AndLo
Posted 10/22/2017 6:10 PM (GMT 0)
hi Andlo and welcome,
your actin sm igg, ANA and CRP are all related to AIH. ESR is non specific, because it doesn't tell your dr where the inflammation is.

Good to see your CMP(liver function, kidney, electrolytes) are normal. Since your RH is also autoimmune, the meds are similar for both.

as far as the next step is concerned, I will notify our aih moderator to follow up with you. may take a day or 2, but she is very knowledgeable and has AIH herself. Stay tuned!!
Posted 10/22/2017 7:55 PM (GMT 0)
AIH can be episodic. I am glad to hear they are doing extra watching and testing. Good luck. Generally they will use a steroid and sometimes an immunosuppressan to see how that works. When AIH is active the liver function tests can go WILDLY high quickly. Stay alert.

Oh, and I forgot, we have a daughter who was diagnosed with AIH, then Lupis, then something else I can't remember, but the final and likely correct diagnosis is long term issues following Lyme Disease (tick born...she lives in CT where it all started.)

Hugs,
Mama Lama
Posted 10/22/2017 9:55 PM (GMT 0)
Thank you for your responses. Is AIH genetic? Do think I will have a liver biopsy? I'm just shocked this came out of no where.
Is it normal for an ultrasound to look normal ??
Posted 10/22/2017 10:26 PM (GMT 0)
Aih like other liver diseases, in advanced stages caused cirrhosis of the liver. In the early stages it may not show up like later. But I am no doc and can't diagnose. And, it is episodic so hard to figure out when you are not in the midst of a flare up.

WE have seen folks here with AIH in advanced stages that need transplants...and quickly. But that is way way way down the line. The good part is that once properly diagnosed and on meds, most with AIH do well...lead normal lives, have kids, jobs, normal lives.

Also know that the arc of liver diseases in long. Like the brother I described in an earlier post. His Hep C was acquired in like 1969...and cured last year...so he had it and it didn't kill him for almost 50 years. It was the booze added that did the job...and even then it was over 50 years of regular use. And only a minor % of heavy drinkers actually get cirrhosis, it isn't a guarantee! That part I understand is genetic, but I am not 100% on that.

In your case, please take the conservative road...

ML
Posted 10/22/2017 10:30 PM (GMT 0)
Hello AndLo,

Welcome!
I wonder if the CRP is related to your being mildly obese. Fatty liver is not uncommon with AIH. Has your doctor discussed the possibility of having NAFLD (non-alcoholic fatty liver disease)? Since your ALT/AST are not elevated, I doubt they'll jump to a biopsy since you're likely not having active inflammation...aside from the CRP but that shows elevation in a few different illnesses.

It's not necessarily genetic. Autoimmune disorders run in families. So it's common for family members to develop one (not necessarily the same one). My two sisters have MS...one is from my dad/mom, the other is from dad/stepmom...so it's coming from my dad's side. My ex-sister in law has MS also so my daughter is a prime target. A few years ago I had them run her ANA so we can make sure...well, what do ya know, she's positive at 1:640 and still is. She had it rerun this summer. No other antibodies are positive so she's on a watch and test regularly plan.

So your US might look normal since you aren't currently having active liver inflammation. I googled US with NAFLD and it might not show up with mild disease. I'd speak to the doctor about it though.

Are you seeing a hepatologist or just your GP? How often are you having lab work retested?
Posted 10/22/2017 11:26 PM (GMT 0)
Hello- DGinSD
I appreciate everyone's input. Thank you!!!
I am 5'4 and 210 pds. My CRP keeps going up though so is my ANA. I've had LOTS of different blood work threw out the last year. I've seen a neurologist last year for chronic migraines and he ran a whole panel of autoimmune work and it was all negative.
I started topamax daily. Migraines are way under control.

Around December back pain was my issue which led to hip pain. Started physical therapy and seeing anesthesiologist for epidural. No relief. X2 MRI. Showed small herniated disc and some arthritis. With no relief and more symptoms occurring like more joint pain, diarrhea, tingling, anesthesiologist suggested autoimmune work up where my ANA came back positive.
Now I'm off to the rheumatologist who checked me for RA and Lupus. Everything negative except the crp, ana, and actin
Now here I am. I am going to see a hepatologist at UCSF ON NOV 8th. I had lab work on sept 7th. I had random liver panel and crp on oct 5th. That was my last lab work.
I'm also really concerned about all this diarrhea. Any thoughts to a connection?

Meds: Zoloft, topamax, Celebrex, neurotin
Posted 12/28/2017 3:39 AM (GMT 0)
Hey there, AndLo!

Any updates since your hepatologist appointment?
Posted 12/28/2017 5:16 AM (GMT 0)
Well I have been twice to UCSF now. The first time was with a hepatoligist who told me I don't have "Autoimmune Hepatitis" because I have never had any abnormal liver panels and my ultrasound showed no inflammation of the liver. The dr is still going to monitor my labs since my other labs like ANA, CRP, and ACTIN IGG were high.
Now since the diarrhea is still an issue and joint pain, I referred to a GI doctor at UCSF. I went for a consult on Nov 21st. Start a trial med called Questrin. Made me so sick. Way more lethargic and vomiting acid. So stopped that med. I am going to have EGD/Colonoscopy on Jan 30th. Nothing was said, but it sure sounds like Crohns or maybe Colitis. I have had many stool studies too. Only thing abnormal is blood.
Thanks for checking on me
Posted 12/28/2017 3:37 PM (GMT 0)
Hi Amelia
I think your referral to a GI may give you answers..colitis is also auto immune and can cause the elevated
ANA and actin igg. Good luck and hope you find answers
Posted 12/29/2017 2:30 AM (GMT 0)
Ppm guy- good to know about the actin igg! Since it being a smooth muscle IGG and all it makes since. Not just "hepatitis". Thanks for replying.
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