Autoimmune Hepatitis Diagnosis???

[Debbie22]

Hello,
I am a 39 years old female. I was diagnosed 5 months ago with Type 1 Diabetes and Hashimoto's Disease. I was also checked positive for  SLE and Sjogrens and I have Linchen Sclerosis.
For the past 12 months my liver enzimes are elevated (not to much, about 2 or max 3 times normal limits). I have a ANA positive (titer 1:160), ASMA Positive, I had a Liver Biposy done and the results came back as "rare isolated focus of non-caseating granuloma and rare focus of chronic inflammation of lobule with minimal chronic inflammation of portal triads, no accumulation of iron or fibrosis".  My doctor was not able to give me a final diagnosis yet. As I understand my liver biopsy doesn't show that I have AIH so my question is : Is it possible to have ANA positive, ASMA positive, elevated liver enzimes, joint pain, nausea, liver biopsy negative and still don't have AIH?? In this case why do I have ANA and ASMA positive?? Are they signs of something else besides AIH?? Can someone give me some ideas, please??? I want to make an educated decision when I talk to my doctor again, especially taking in consideration the fact that the treatment for AIH will be very hard on my body, as being Diabetic. Thanks for your time!!!

[Debbie22]

Thank you for your concern. Well after almost a year of tests and doctor's visits I was send to SHANDS and there the dr. confirmed that I have AIH. I am currently on treament my Liver Enzimes came back to normal which is a relief. I have to say that I've learned a lot in this past year. I've read, spoke to a doctor friend of mine overseas, asked opinion from his fellow doctor's... Fortunately as I understand liver has a enormous capacity of regeneration but we can't rely on that and just ignore whatever is going on. The biggest challenge for me was make a decision about a treatment that would not do more harm than good and I spend months trying to make my mind, taking in consideration the fact that I don't have only one issue going on... I think I mentioned in my first message... I was a very healthy 39 years old woman and all the sudden I've got so sick that I can't even start to number the symptoms...I was speechless to find our that I not only had Diabetes but Type 1 Diabetes! My pancreas went from producing insulin to not producing at all in a matter of weeks!!! and I am not kidding! I am very thin person, my diet was always good (I have my chocolate weakness :D ) and not one single person in my family had health issues that we could say comes close to what I am facing. At the same time I was Diagnosed with Type 1 Diabetes, I was also diagnosed with SLE overlaped with Mixed Connective Tissue Disease (now controled with same medication for AIH), Thyroid Hashimoto, Sjogrens Syndrome (beggining stages and not active), Moderate Myocardial Ischemia, Hiatal Hernia, Ulcer, Linchen Sclerosis, gallbladder issues, and now the confirmation of AIH... it is almost unbelievable! As I had my appts with dr. they would say that I was an "interesting case"... not fun I have to say. I guess something trigged my body to respond by attacking itself all at once... it has been a long journey and many times painful between the diseases symptoms and medicines side effects but I don't give up. God graciously has helped me to be strong and to make lemonade with my lemons and I try to be encouraging to everyone that I have a chance to talk to... life is too short and sometimes too hard to be lived alone or whitout hope. Between my loving husband, my 5 years old son and God's grace, I am able to live a blessed life. I agree with you, take charge of your health, do your home work before and after you talk to you doctors and be firm, ask questions, research all the medicines side effects and ask for alternatives... I've done that I so far it has worked for me. I hope to hear from you soon. I am interested in find out how was your visit with your doctor. Also, we have very nice ladies in this comunity that are going through the same problem and they are great at comforting you when you think that you are alone when it comes all the pains and aches that that disease brings.
God bless!

[bloomerdale]

I am so sorry to hear what you are going thorugh.   I too am having these same problems you are having.  I am just at the scared stiff stage, that I should have been treated last month and there is damage going on in that liver.  A few years ago, my family dr said I had slightly elevated liver enzymes, nothing to worry about, probably fatty liver.  Okay, so I trusted him.  Mistake number 1 - never trust the doctor.  It's up to us to take full charge of our health issues.  Reading on the internet- there are also sites where a dr will answer your question, I went there too.  I am 53 yrs old.  In March I went to the Spine Clinic as I have neck and lumbar sacral issues that require injections every year or longer.  I did myself in painting the very small entrance to our condo.  I could not even stand up I had to sit on a stool that nite to shower.  That ended up with me having joint pain.  On the dr's diagram- I circled all the joints on my fingers, wrists, elbows, knees, feet.  LS is my largest concern from accidents.  So the dr sent me to a Rheumatoligist.  I had + ANA and other blood tests were done.  I know I was told I had high amount of inflammation going on in my body.   (Plus I was just diagnosed woth severe sleep apnea about 2 months ago- I was sleep deprived and had nocturia)  So my liver enzymes were elevated.  Dr redoes-I don't have the ANA result but AST is 127 and high as yours is; ALT is 154 and high the dr said 3- 31/2 x is not normal- probably have AIH.  I can't express how stunned I was and still am.  The liver is enlarged, spleen enlarged and cyst in middle 1/2 of the 1 kidney.  I did a search on AIH on the internet in my toolbar and read and read.  They all say about the same- some a little more than others.  I am stilll fatigued and also my blood sugar is 158 2 days ago, not even diagnosed with diabetes yet.  Wonder when that will come?  It feels like ther eis pressure under my breast area.  I was taken via ambulance a few weeks ago with severe pain there, throwing up and diahrrhea(sp) like water.  My Bp dropped to 80/60 and they took 20 minutes to stabilize before ER. There is a big quetsion mark about whether this was related.  I had no flu, and no symtoms.  It struck suddenly and violently.  I had to take 5 days off work as I could not eat.  Liquids, then soft foods.  Anyhow I was told to see a gastroenterologist-hepatologist.  There are also sites that you can pull up that give you information on where to find these rare drs.  I live in the Tampa Bay, Fl area and would need to travel to find a specialist in those areas.  I decided to go get the testing and if I get toy our point I will then go to a SP in those areas.  Gainsville, 2 hrs away, Miam 4 hrs, Jacksonville.  I have been told treatment is effective early.  I was told by a dr it can be treated with prednisone, so I understand your concern with your diabetes.  I know from my sister that makes your sugar levels go up.  However there are new treatments I read and generally the liver sp knows the new things.  I odn't know where oyu live, I came originally from near Pittsburgh, Pa and they have a great place there.  UPMC I think it is called now.  It's amazing how little doctors tell us and we have to go scrounging for the answers.  I was told the dr needs to do ANA/SMA/LKM1/AUTOANTIBODIES/VIRAL MARKER STUDY/LIVER BIOPSY.  I am not looking forward to this.  Oh joint pain and fatigue are listed in this condition.  Try to do a search on AIH and see if you can find more information.  I feel your concern and am also concerned for you.  I am not taking this light nor playing around, once the liver is damaged??  My BF died of Liver disease about 5 yrs ago.  This dr told meif this is not treated you could end up with chronic liver disease or cirrhosis or liver failure.  So I have made an appt just today with Gastro for Fri and if necessary will go to Hepatoligist.  Good luck to you, I would be interested in learning more about this as well.  Hope you are feeling better, God Bless and take care. Jean

[Debbie22]

Well... I wish things were easier to find out... saw another doctor and now they are testing me for Sarcoidosis, Liver TB and AIH. It doesn't look like I will have any sort of answer soon... I hope your husband is doing better... at least sounds that he got an answer pretty fast. Take care!

[drian]

Hi debbie!
My husband had also granuloma. He was diagnosed pretty soon. He took medication right away (Ursofalk and Imuran). Maybe you should ask for a second opinion.
All the best and feel free to write anytime.
Drian

[Debbie22]

Hi Drian!
Thanks! Do you remember your husband's results?? Anything related to granuloma or something similar? Was he dignosed in the beginning stages? I am going to see another doctor soon. My first reaction and after reading a lot about the treatment is to not go for the treatment yet. You see I am Type 1 Diabetic on Insulin Pump, I have heart disease (taking nitrates) and other complications and the treatment itself seems to be very heard. I am researching other forms of treatment before I make my decision. My best wishes for you and your husband. Please keep us posted so we can learn with your experiences! Any aditional information is always helpful and useful! Debora

[drian]

Hi Debora!
I am not any doctor, but I think it is possible that you have AIH. The liver biopsy may result like yours when the AIH just began, so your liver is not so affected. My husband has a liver biopsy just like yours. I sugges you see another doctor and start getting some medication. Good luck and hope to hear well from you. Drian

[Debbie22]

Hi Jody,
Thanks!
I know, it is very weird. Up to 1 year ago I was just fine and healthy and now I am so many issues at once!!! I can deal with all the other issues. I am learning, reading and getting as much as I can about them and I can make good decisions based on my conversations with the doctors but I am concerned about the AIH Diagnosis... the treatment is very intense and I am not sure if I would go for it. I really would like to understand the meaning of so many positive antibodies and other issues for AIH and still the liver biopsy doesn't show that it is AIH (at least that is what I doctor told me). Anyway.. I will keep reseraching. Thanks again!!!  Debora

[Jody515]

Gosh Debbie,
I am sort of lost on all you have going on.  What type of joint pain are you experiencing?
The only joint pain I experienced with AIH was upper body.  
There are others out here who have had  similar issues but haven't posted in awhile.
I wish I could be of more help to you but with the biopsy I had it was pretty clear about my AIH.  
I truly wish the best for you & maybe others out here could be more help.
Jody