I started turning a little yellow this week.......got some questions?~?

Ok, here goes, I have always have autoimmune issues, I had hashimoto's and had my thyroid removed, I had a positive ANA when I was pregnant 22 years ago and have always had some sort of symptoms of Lupus.  On June 1st I had what was supposed to be a minor gallbladder removal but it went way way different.  I had gotten very ill 3 weeks prior to the surgery and couldn't eat or when I did it came out so three days prior to surg I started to swell from the knees down.  I worked for my PCP at the time and she said it was nutritional, on day of surg I told anesthesiologt about the swelling and  3 week sickness and he ordered stat bloodwork but next thing I knew I woke up and I had a 13 inch incision because my gallbladder was 4x its normal size, my intestines were knotted around a huge hernia and they found stones in my appendix.  While in the hosp I continued to swell and I mean SWELL but it was just shrugged off.  They did say all of my electrolytes were off but anyway after 6 days I was sent home.  I of course got bigger and sicker, two days later I was in the ER with congestive heart failure and was swollen with 50lbs of fluid from protein malnutrition.  I was told I was approximately 2 days from death.  I was in the hosp another 13 days to be fed TPN thru a PIC line and lasix you wouldn't believe.  I am NOT getting better very fast but I got very weird symptoms and they just kept coming.  Horrible mouth dryness I can barely describe, within a month I will be bald the hair loss is so bad, I hurt so bad in so many places it isn't even funny, and my fatigue is mind altering.  I fall asleep waiting on a green light I have no words for this type of tired.  After my dr got done rolling her eyes when I asked for an ANA test it came back positive.  Now I am in the hands of a rheum who did more blood work and my vit d is very low my calcium is low and my liver enzymes are elevated he thought I could have autoimmune hepatitis.  He did some more blood work and it said that I do not.  SO....to  my recent event!

I am still really not feeling well, I have a true sense of not myself but I had a traumatic family event this weekend and I got upset and was having a lot of vomiting all Saturday night and the fatigue is really really bad right now (I am on Vyvanse which usually helps)  I work at my new doctors office and he said when he first had a visit with my that I was lucky to be walking around at all, that with blood levels I had I should be dead.  Anyway I passed his nurse in the hall on Monday and she grabbed my arm and said "Why are you yellow?"  She pulled my eye down and looked she said you just won yourself fasting blood work.  I have had really bad experiences with docs lately so he said he prefers to draw all his own to make sure he has it all.  He said that I should not have been told that I don't have autoimmune hepatitis unless there is a biopsy done.  So now I wait on this new round of blood work.......

Have any of you turned yellow before?  I was told I don't have autoimmune hepatitis I am so sick of myself I really am.  Any thoughts anyone?

Peggy

Synthroid 250mcg, Topomax 100mg, Lamectal 300mg, Vit D 50,000 mon/thurs, B12 inj once a week, Plaquenil, Valium PRN, Lasix 40mg 2x daily, Percocet PRN, Imitrex inj or nasal PRN, Phenergan, Vyvanse 40mg

PJ555,

So which blood tests did they do that they told you you definitively don't have AIH?  Sometimes, the antibody tests for AIH are negative so they HAVE to do a biopsy.  It sounds to me like an AIH issue.  They should also test you for Sjogren's for the incredible dry mouth.  Once you have one autoimmune disorder, the door opens to others.

Please don't let them put you off any longer.  Insist on a referral to a hepatologist.  If your ANA is elevated and your liver enzymes are off (the yellow is more than likely your bilirubin being elevated) then you should see a specialist.  I was almost orange by the time I had my biopsy but it went very quickly for me.  From the first time the jaundice showed in my skin to the near orange and biopsy was 2 weeks.  They should also check your blood clotting factors.  I was so sick I couldn't clot so I had a transjugular biopsy because the risk for bleeding out was too great.  I am very happy I had my biopsy that way. 

So I think this doctor does know more since he told you you shouldn't have been told you don't have AIH without biopsy.  I'm sure your levels will come back high and he sends you for either a biopsy or referral (or hopefully both) but if he doesn't, ask ask ask!  It is a potentially life threatening illness but it is treatable.  I live a perfectly normal life with it.

Sorry for not getting back to you sooner.  I know how scary it all is.