I see so many questions on here about labs and what do they mean. I remember being so afraid when they first started looking at PBC in me. It all started with a new patient physical back in 2002.
My alk phos test results came back elevated, only issue in the whole kebang, my new PCP(primary care physician) referred me to GI. More blood tests, alk phos still elevated, but nothing else. Told me to come back once a year to keep an eye on it. Did that. Was over weight and needed to lose weight but not much else going on. I worked for the government, and eventually took an expeditionary position to Iraq in 2008, in my pre-mobilization physical again only thing that was an issue was elevated alk phos. Came home from Iraq in 2009, and this is the part that I had posted about before on here. When I came home I went for another physical, figured it would be important upon returning from Iraq. My cholesterol was 360, and alk phos still high. I was itchy too, made me crazy, my PCP kept treating the itch with benadryl and antihistamines which did not really help. I was tired because of waking up in the middle of the night scratching. I had no rash, just scratch marks all over. I went to see GI about the cholesterol and the alk phos, he noticed me scratching and said he was going to so extra blood work. This blood work came back positive for AMA Antimitchondrial Antibodies, specifically M2. I was sent for a needle biopsy and an unltrasound. I also when to see an immunologist who tested me for a mess load of antibodies to screen out for lupus, he said the only thing that came back was the M2.
The Biopsy and ultrasound came back with NAFLD- non-alcoholic fatty liver disease. My GI referred me to a surgeon and suggested I look into Gastric Bypass. I was about 80lbs overweight at this time. I started the process for the Gastric Bypass (my mother had had it done), and continued to follow up with GI, but now it was every 6 months instead of once a year.
I had the gastric bypass in December of 2012. It was not an easy recovery, I had quite a bit of pain, but I progressed well and dropped 80 lbs the first year and another 40 in the second year. I only had one issue at 3 months (March 2013) after the GB (gastric bypass) surgery, I had a small bowel obstruction and had to have my gallbladder out. Had some adhesions from the GB procedure but that was the only time that I am aware of that it caused any issues. I was doing great come the end of 2014, I had finished my bachelors degree. It was just after Christmas and my husband and I had gone out to eat and were shopping when the pain hit.
I am not the kind to run straight to the ER when in pain. I tried to focus on it and figure out where it was coming from and I was trying not to worry my husband. The pain was steadily getting worse as we walked around the store and at some point my husband noticed I wasn't chatting anymore. He asked me way was wrong and through gritted teeth I told him I was in a lot of pain. He dropped what he had been looking at and we went home. I was in so much pain I could not sit down or lay down, it was awful, I finally said I had to go to the Emergency Room, I was pretty sure I was having a pancreatitis attack. I had one when I was 15 years old and had spent a week in the hospital recovering, but this was the first time I had another one that I knew of 26 years.
When we got to the ER I told them that I thought I was having a pancreatitis attack and they took me back and started the blood tests and gave me medicine for the nausea and pain. They determined that I was, in fact, having a pancreatitis attack and gave me zofran for the nausea and percocet for the pain and sent me home. I was up all night vomitting, I couldn't keep the pain medicine down. First thing in the morning I went back to the ER with my discharge paperwork from the night before. They did more blood tests, but now it seemed I was having liver failure, everything was off the charts. The admitted me and did a CAT scan, an ultrasound and an MRCP (MRI of the Bile Ducts). They said I had dilated biliary ducts and that I needed a procedure called an ERCP (Endoscopic scan of the Bile Ducts). I was still in a lot of pain every time I ate and struggled greatly. My ERCP was scheduled for the end of January, but it was inconclusive, they had not been able to get to the bile ducts because of the re-routing of my digestive system from the Gastric Bypass. Another ERCP with surgical assistance was scheduled for early February. This test did not go well and wound up being admitted with ascites, they also placed a feeding tube for better access for the next ERCP. They had placed drains for multiple abscesses and I was in a pretty bad way. They drained 2 liters of fluid from my back at one point. The next ERCP was scheduled for the end of February and again they were not able to access the hepatic bile duct, I continued to get worse and eventually they transported me to a bigger hospital at UNC Chapel Hill. At Chapel Hill they did another ERCP and placed two stents in my pancreatic bile duct and another stent in Hepatic bile duct. They diagnosed me with a fungal blood infection and began to treat for that. I continued to have pancreatitis and could not eat. I was in UNC for over four weeks. In my time there I had a collapsed lung, a PICC tube placed to treat the blood infection and once that cleared to feed me TPN (nutrition cocktail via central IV). I wound up having more drains placed and a chest tube. It was a very rough run. They were very focused on my pancreas and clearing the infections.
At my heaviest when I got the Gastric Bypass my weight was 247 lbs., after I got out of the hospital for all of this my weight had dropped to 107 lbs. I was weak as a baby and it took me months to recover. I could not put any weight on till they started giving me CREON, which are pancreatic enzymes. I was also being followed closely for a rather large pseudocyst on my backside of my pancreas which at its worst measured 3.5cm by 7cm. It took 18 months for the pseudocyst to resolve and once it had I found I did not need the creon anymore.
Now we are in 2018 almost 3 years since I had the stents removed from my pancreas and liver and at my last appt up at UNC I discussed the antibodies with the doctors there. In all the hulla baloo about the pancreas, I had gotten off track on checking my liver function like I had been. I wanted to make sure they were planning to follow that. They repeated my AMA tests and again I tested positive for the M2 antibodies. They are going to start to screen my liver function test once every 3 months with 6 month check-ups with the GI doctors at Chapel Hill.
Right now my Liver Function Tests are the best they have been since 2002. I hope they continue that way. I do worry, I never want to go through the craziness that the beginning of 2015 brought again. I try to focus on my diet and do what the doctors tell me to do.
My M2 antibodies were 54 back in 2009 and are only 63 now.
My Alk Phos, outside of the craziness of early 2015 vary between 126 and 215, not too terribly high.
I have had elevated bilirubin a time or two but never to the point of yellowing eyes.
I am concerned currently about my eyes. I was diagnosed with cataracts in my right eye back in 2011, and I am pretty sure I have it in my left eye now. I also think I am having issues with dry eye syndrome. I see the Eye Dr this coming Tuesday. Other than that I struggle with anemia, which also causes fatigue, and some tingling and numbness in my shoulder, one of my fingers, and transiently in my lower lip, so I will be seeing a neurologist soon too.
I am still pretty healthy after 16 years of elevated liver enzymes, I work out and am currently working on my Masters Degree, my children are 21 and 17, I have been able to be here for the important things for them.
So what I am trying to say is, just keep swimming, handle each day as it comes. None of us really know what life is going to deal us, we just take it day by day, so really having this issue is just part of that. There is hope for us, transplants do work, and while I hope never to need one, I understand if that is the hand I am dealt I will deal and thank the lord above for all the time I have been given with my those that I love.
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Need help about AMA versus M2 test and my results
What exact labs should one request the doc to do to see if they have PBC? 
Liver Biopsy Negative can it still be PBC?
More confuse than ever!
