Wow Lauren, you body is keeping you busy for sure. I also struggle with many AI issues (MCTD) and my primary problem is a sister liver disease to AIH, but it focuses mostly on the bile ducts.
Not sure to start with your message, you've got a bunch here for sure. First off your primary symptoms wrt what you're feeling and your family/friends are noticing. Check you bilirubin levels, if they are lower than 2.5 mg/dL, then what your friends see as an off color is "pallor" (due to the anemia) and not jaundice. My friends made the same mistake when they kept noticing that "I didn't look right".
Also, the anemia can cause quite a few of your other symptoms as well: fuzzy headed , cognitive difficulties, extreme fatigue, etc. Do you have any other types of bleeding as well? For instance, blood in the toilet and/or in the stool after a BM? I ignored this one myself not realizing how much blood you can be losing.
Your liver enzymes are slightly elevated and point towards a cholestasis issue. I wouldn't read too much into these given it's just one data point, but your ALT and AST levels are a bit low for an active AIH case. But your ALP does point to mild bile flow obstruction and that fits with many of your other symptoms: RUQ discomfort, cholesterol, light colored stools, dark urine, etc.
Please note we are not doctors here but we can help you in dealing with some of your medical issues based on our collective experiences and knowledge. And please do see you doctor(s) about all of this with followups. If you are dealing with AIH, then get your GI to recommend a Hepatologist for you. You do need a liver specialist when dealing with AIH, especially given the additional issues that you have going on as well.
Hope this answered your question. Take care.
Thank you for your reply ! Once I reread my post I realized how all over the board it was so I appreciate trying to make sense of it . I have some more questions for you or anyone who wants to chip in . I will check my billiruben count to see if its lower then that , I am pale and I don't go out in the sun since I'm sun sensitive from Lupus . Under my eye lids there is a half to 3/4 inch ring of straight yellow constantly , it gets lighter and darker but never fully goes away , could that be consider jaundice ? Nurses always say yes but drs ow me off and won't even look at my eyes .... I haven't had a lot of luck w drs since I became sick none of them believed me when I said something is not right for 7 years they told me it was all in my head come to find out I have end stage bladder disease, lupus, fibro and on and on . And this GI Dr I saw completely blew me off w having anyiver issues. What concerned me was he told me that my ASMA came back HIGHLY POSITIVE and then he said he has no idea what that means . So I looked it up and everything I found says that highly positive ASMA and positive ANA point to Autoimmune Hepatitis and that you need a biopsy to confirm. So that made me feel like maybe i need to see a heptologist because this particular GI didn't know what the tests he order meant and he didn't order the right set of tests seemingly either ... does anyone know about the ASMA & + ANA tests regarding AIH ? Also is it possible for your levels to go up and down between flare's ? My rheumatologist said I have all the classic symptoms of particularly AIH but that he definitely believes something is going on w my liver thats autoimmune based , do I sound like I fit any category ? I'm just so tired of being sick and want to feel better I know something is not right and if I could have it figured ou and begin treatment then I may start to feel better ...
The key with your eyes will be your bilirubin level. Jaundice will not occur until the levels reach 2.5 or higher. In my case, I also had horrible sunken, deep color around and underneath my eyes. And my anemia was bad enough for transfusions to be considered. Once I got my GI bleeding under control and my red blood cell numbers improved, this slowly went away and everyone loves my color now. Amazing what a little blood will do in my case.
Now wrt your liver issues, I suspected that your GI doc wasn't on board with the AIH diagnosis. As I indicated, your numbers aren't consistent with that even though you do have ANA and ASMA positives. So I'm afraid there is no way he'll authorize a liver biopsy which would be needed in your case. Btw, did he test for AMA as well?
That's why it might be a good idea to at least consult another doctor (preferably a hepatologist) to get a second opinion if you still feel strongly about the AIH. Keep in mind that other CTD AI diseases like Lupus can also affect the liver in secondary ways. This would not be a pronounced as AIH but is something to discuss with your rheumatologist.
Clearly you do have AI issues and yes, they can wipe you out for sure. It's completely changed my life in recent years and isn't much fun. Diminishes our quality of life in countless ways. Unfortunately, finalizing the diagnostic process with them takes forever sometimes.
Thank you for your input . I am definitely going to see a Heptologist and have them check me out , I'd rather have a second oponion by a specialist who knows what they are talking about and maybe they can figure out if/what is going on ...( the reason I feel this GI doc didn't know much about liver issues of autoimmune nature is because he flat out told me he doesn't and then 2 he ordered the ANA & ASMA and tells me " Your Ana & ASMA came back extremely high, but I have NO IDEA what that means honestly, but I think your fine and don't have any issues" so that didn't make me feel very secure about his professional opinions ) I know that a lot of the symptoms of AIH are similar to the conditions I already have . While I am not trying to force a DX, it just seems to fit w what has been happening to me for the last 3 years , the on and off attacks , the worsening of how I feel , the seemingly unexplained reason why I became menopausal at age 33 etc No he didn't order an AMA, when I looked up what blood work SHOULD be ordered for possible AIH or just AI liver disorders in general he barely ordered anything that he should have w the exception of the ASMA, the rest of the blood work was just testing for HEP A, B, C which I was negative for all 3. As for my billiruben count its just under 2.5, and I meant the whites of my eyes are dark yellow underneath the eyelids mainly although it slowly creeping towards the middle of my eye . Is it possible for your billiruben levels to ebb & flow w attacks ? Because the times it becomes more pronounced & dark yellow is during/right after flare ups . I have had several nurses in my family check it out and they said it definitely looks like jaundice in the whites of my eyes and oh the inside of my mouth turns very yellow as well during after these flare ups , so I wonder if the Billi count could go up & down . Unfortunately I haven't had blood work during or right after one of the flare ups , just in between and while I still feel crappy its not as bad as when these symptoms seem to flare and worsen ... Do you know of any other reason an ASMA comes back really high ? I can't find any other conditions its associated with, but since it was so high I doubt it was just a random fluke .My rheumatologist doesn't want to see me back until I see a heptologist because he also thought Acute Intermittant Porphoria was a possibility at some point which can also cause liver issues in time... My red blood count is low but not extremely low, so I don't know if I would be considered for a blood transfusion ? My anemia is pernicious anemia , so not the same as an iron deficiency , mine is a severe B12 & folate deficiency, that should up randomly at age 32, before that I had regular iron deficient anemia my whole life . O had read on a few websites that sometimes almost "near-normal" levels of liver enzymes can be found and to depend on the serological aspect more , and that an automatic liver biopsy should be done if AIH or PBC is expected since in the end one is needed to firmly DX and categorize the extent of damage there may be. I would feel better if I had a biopsy and knew for sure, but I want a heptologist to do that not a GI doc. I never had my liver enzymes raised until recently, and while they aren't that high they have persistently above the normal range ( except my BUN levels) for the last 3times I've had blood work drawn since August. Oh I also meant to mention as one of the most concerning symptoms is that my body is no longer filtering out medications , case in point I was hospitalized in August and given certain meds while in there that should up in blood work that was taken in Oct and Nov , when it should have cleared in days( that is what the ER docs, and my primary care doc told me) and also I VERY rarely drink but had a half of a glass of wine on my 35 birthday on Oct 1st, and that alcohol showed up in my blood work in Nov !!! My doc alcohol especially small amounts such as a 1/2glass should clear my system in 24hours ,48 tops and that isn't the first time that happened to me , this whole alcohol/medications not clearing my system normally began in the end of 2012 so its been ongoing . That seriously worries me, because it elludes to the fact that my body can't cleanse out toxins ,medications and other things it doesn't need or that's bad for it. Sorry I'm rambling, its just I have no one to talk to about this so I just want to get it all off my chest . My other concern is that I was told that I didn't have my bladder disease for years too then by the time I was finally officially DX I was at end stage & they want to remove my bladder . It took me 3years for anyone to listen to me about the Lupus, my Dr didn't believe me w that either ,until I came home from a shore trip where I was out in the sun and it caused my entire system to flare ( rashes, petechia, nodule tumors in my lymph nodes w lesions over the tumors , not to mention pain, fever, hair loss, swollen lymph nodes, butterfly rash etc etc) they finally believed me once I had a stroke at 31. So I'm afraid of the same thing happening w this, that I'll be blown off & told "your fine, your fine, your fine" then BAM my liver starts failing and then they'll listen and figure it out, especially since I've been having symptoms for over 3-4 years now . So that concerns me, I agree that AI conditions can really put you through it and make you feel incredibly cruddy and I've wondered myself if maybe its my Lupus attacking my liver or just causing inflammation in a new organ system, but hopefully a Heptologist can figure out the difference or what's going on and if its not my liver maybe direct me to different specialist who can help me...
I also debated on mentioning this since its such a private subject but figure I should since it could possibly have something to do w things , minimally speaking it definitely made things worse I would think... I have tried to take my life twice now, 1st time in January 2013 and the second time this past August 2014, both times I purposely overdosed myself on medications ( old antidepressants, anti-seizure meds I take for nerve pain, muscle relaxers and this last time valium )the first time I took 8 & 1/2 bottles of medications, and the second time I took 6 & 3/4 bottles and then duct taped my mouth shut so my body couldn't force itself to get rid of them . Not that the reason has anything to do w the physical damage this could have triggered but I was so overwhelmed & depressed from living w such severe chronic pain all over all the time I just couldn't see how I could make it through another year let alone a lifetime and since I'm disabled I'm on a fixed income and was trying g to support 4 people on 1grand a month and wound up going under so I lost my apartment and became homeless the 1st time in winter where I would've frozen to death or starved and the 2nd time was summer but the same thing I lost my home and because of that I lost my kids and I tried to find shelters and help but either there was no funding or the programs closed so every where I turned the doors were slammed in my face. My family abandoned me once I became sick, and so did majority of my friends so I had no one I could turn too and I just couldn't seem to find a way to fix things no matter how hard I tried. But anyway , I had been having symptoms before either attempt, so I don't think this is what originated whatever this issue is, however I'm wondering if it could've worsened it ? Could my doing this twice caused mild damage to my liver ? It makes sense... Although I would've assumed my liver would have healed by now, or been in the process of since 2years ago...I also around the time the symptoms started to occur & shortly after I started a statin drug (simvistatin) for my incredibly highof hloestoral at the time ( bad was over 300, & good was over 200 , I'm 4foot 11inches and 110 pounds so I'm not obese or eat unwell in order for me to have incredibly high cholesterol the way I did. When my cholestoral came back so high it was then suggested to me that there may be a issue w my liver since cholesterol is the livers responsibility to handle that. So technically there were seemingly issues before I started the statin drug which I read is one of the drugs that can induce AIH . But with what I did,even w symptoms starting before that, I put my body through the ringer , especially my liver since its responsible for clearing medications and toxins out of your system ... So that could make my levels rise slightly too couldn't it if my liver was struggling to heal from my attempts ?
I think you switching doctors is a good idea, hepatologist perferably. If your current doctor is blowing off possible jaundice and your bilirubin is hovering around 2.5, well that's not a very diligent at all. Along with the cholestasis comes malabsorbtion issues as well. You definitely could use a new set of eyes on this.
And there are others groups/forums here like Depression for instant. Others who might be able to help.you out with other issues. Please don't chose a dark path again with help, advice and friends available here and elsewhere!