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Autoimmune Hepatitis

Last March I went to the doctor because I was having low grade fevers, muscle weakness, and flu-like aching. Blood tests showed normal CBC, LFT's, and electrolytes, positive ANA of 1:640, positive LKM1 antibodies, positive antibodies for prior EBV and CMV infection, high morning blood cortisol, negative anti-DNA, SSA, SSB, Scl-70, cardiolipin, negative hepatitis viruses, and normal 24 hr urine cortisol.

I have a history of positive ANA 1:320, positive anti-cardiolipin antibodies, anemia, low lymphocytes during pregnancy ten years ago. I've also had a rash on my cheeks and nose since that time for which rosacea creams don't help. I have dry skin, rashes, and tight, cracking skin on my fingers. I also having joint aches in my fingers in the morning sometimes. I'm cold all the time. I have had bloating for years and have been diagnosed with IBS and gastritis. I've had random vomiting episodes where I feel lightheaded and my arms go numb since childhood (I'm in my 30's now). Have gone to the ER for it, but they didn't check liver tests, only CBC and electrolytes which showed high WBC, high neutrophils, high MCH, low sodium, low calcium, ketones in urine, and high urine PH. I have Hashimoto's but it is well controlled. My mother and maternal grandmother died of liver disease, and my dad had Hashimoto's, diabetes, and he died from interstitial lung disease.

Went to a respected hepatologist at a major medical center and he said the LKM antibodies are associated with autoimmune hepatitis type 2, but since LFT's and ultrasound are normal, I just need to have blood tests every 6 months at my GP. Rheumatologist has diagnosed me with undifferentiated connective tissue disease and I'm on Plaquenil. I'm wondering if I should push for a liver biopsy because of my family history even though my liver tests seem normal. I know it is important to get treatment with AIH to stop progression to cirrhosis. My hepatologist thinks that since my tests are normal, I'm probably fine. I'm just afraid he's going to turn out to be wrong, especially since I'm still having aching and fevers, which I know can be present in liver disease, but maybe it's just the UCTD. I don't know what to think.

Anyone have any insight on my situation, please?
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Avatar universal
Thank you for your reply. I may seek a second opinion at some point. I feel like I've seen "the best" in the field so maybe I should just let it go and not worry about it. I know AIH type 2 is rare and more common in children than adults, but just because it's uncommon doesn't mean it's not happening to me. I've had some symptoms (nausea, vomiting, bloating) since childhood, and now I'm having fevers and weight loss (forgot to mention that before). For all I know it's been missed all these years. Probably not, but who knows. I haven't exactly had liver tests done very often in the past and AIH can be mild and flunctuate. I just can't shake the feeling that the LKM antibodies mean something. My mom was diagnosed with cirrhosis in her 40's and died from complications of it in her early 60's, AND her mom died from primary liver cancer at 80, AND I have antibodies and symptoms that could be attributed to liver problems. It's too coincidental in my opinion. In any case, my basic blood tests are normal so I guess there's nothing to be done right now. I will be diligent about getting liver tests like my specialist advised. If anything new pops up I'll be sure to post an update.
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Avatar universal
MEDICAL PROFESSIONAL
Hi,
I understand your concern regarding this considering your family history.  Type 2 autoimmune hepatitis is less common and occurs more often in children than adults. And it is good that the present test results are fine. While blood tests and liver biopsy are needed for the diagnosis, other considerations such as risk factors, symptoms and results of other tests are also important. It is important that you talk about this with your attending physician also for proper evaluation. Seeking another specialist's opinion may also help. Take care and do keep us posted.
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