Need help decoding labwork : Hi all. I have... - PBC Foundation

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Need help decoding labwork

Mittenskittens52 profile image
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Hi all. I have had a rough year in terms of my health. Before this year I was very active and healthy. Played high intensity soccer 4 times a week, hiked, and surfed. I'm 29 y/o female. In February I went jaundiced, was violently throwing up, high fevers, and basically felt like I was going to die. Finally got a surgery in April and doctors took out my gallbladder. It was rather normal? No gallstones, not even sludge, inflammation or wall thickening. He only said it was a little off color. They also did a cholangiogram while I was in the or. On that report they said I had opacification of the extrahepatic and intrahepatic ducts and theysaw slight irregularities in the common distal duct at the level of the ampulla. My doctor never told me about any of the bile duct stuff. Fast forward I'm 6 months past the surgery. I did well for like a month? Then my bilirubin went back up again, (do not have Gilberts) my anion gap has been low and my alts are always low. All of these labs have been this way now for awhile and doctors seem stumped. I started having low iron without being anemic, low potassium, and low magnesium which I've never had before. I am extremely symptomatic. I had been holding a low grade fever often, when I eat it's not violent like it was before my gallbladder, but I feel very nauseous, losing lots of weight. Most concerning symptom of all is after I eat my blood seems to be pumping really hard in my stomach area to digest my food which it doesn't seem to be doing well so then I get heart palpitations and I eventually start to pass out. I had been close to passing out all of the time. Does anyone know if this could be bile duct? Maybe my surgeon messed up my surgery? Or perhaps signaling to a liver issue with constantly low anion gap and alts? (I also wonder since I'm having low for so long if it's possible I may be a rare case of someone who is not producing ENOUGH liver enzymes?) I would be really appreciative of any help possible. I did test positive for crohns on my autoimmune panel as well but so far no crohns found. Psc can come up though for that same test.

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Mittenskittens52
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Ktltel profile image
Ktltel

Mittinskittens52,

Man, what an ordeal. AND, i bet your still trying mentally and physically to catch up with everything.

I don't really know what to tell you about your labs, but, as far as PBC goes there are usually 2 markers present to make a diagnosis. AMA-M2 test, and another liver enzyme testing elevated. For me it was AMA-M2 and my Alk-phos. Both were elevated.

Did they diagnose you with PBC? Are you on any medication for any of this?

It's quite a shock for you. I'm so sorry. Hopefully others will come on here and provide some answers for you.

Hang in there...

Stella ♥️

cazer profile image
cazer

are you under a liver specialist... if not this is what I would be asking for.... cazer

It's just a thought but could some of the symptoms be a flare up of the chrohns. The symptoms of this disease differ depending on where the chrohns disease is, for example it can affect either the colon, stomach, intestine or esophagus. The other thing that occourd to me was your low iron without anemia, I had low blood iron once without anemia but it was found to be too high in the liver.. also have you had your vitamin B12 levels tested? If it were me I'd be asking to be referred to a heptoloagist you mention PSC at the end of your post was this diagnosed? this is different to PBC and needs looking into by a specialist.

PSCMartine profile image
PSCMartine

Have you been diagnosed with PBC at a specialist centre?

I ask because I have PSC (not PBC) and what you describe is familiar. Most (80%) people with PSC have IBD. What you describe sounds like it could be IBD issues, but it also sounds a bit like a PSC flare up, for which you could need antibiotics.

Whatever the causes of your issues, you should think about getting checked out by a specialist soon. You’ve had a rough year, and I hope your specialist can get to the bottom of the issues and help you get your life back on track xx

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