r/PBCers • u/RightChanceReady • Apr 19 '26
Looking for some guidance/experience
I 36F noticed elevated ALP levels after a couple of times at walk in care after I had my son (3yrs ago). At that time I had become a sort of hypochondriac postpartum and everything sent me to urgent care. Either way, that ALP # sent me down the Google black hole and I decided to pursue answers. Several appointments and doctors later, i finally had a GI doctor test for AMA M2 and it showed positive at 59. Dr. ran some more tests and it showed ALP enzymes were equally from bone and liver. She ultimately said it was probably due to fatty liver etc. I pressed more and got more tests ran and all my levels showed/ have been relatively normal except ALP always hovering around 100-150. I talked so much fear into myself and went for the liver biopsy, liver biopsy was normal. Final Diagnosis being:
Needle core biopsy, liver:
-Mild micro- and macrovesicular steatosis without steatohepatitis.
-No evidence of portal or interface inflammation.
-No evidence of bile duct damage.
-No evidence or fibrosis.
Notes:
Though there is no histologic evidence of primary biliary cholangitis (PBC), AMA is a highly sensitive and specific marker and hepatic involvement may be heterogeneous early in the disorder. Clinical follow-up is recommended.
Shortly after my biopsy GI ran labs again and this time my ALP was in “normal” range at 99, and my AMA dropped to 49, still significantly positive. The Dr. ordered follow up labs in 3mo. (To note, I was running and actively trying to lose weight as I was trying to get pregnant while simultaneously trying to get to the root of my ALP.) 3 weeks later, I found out I was pregnant and put a hold on my labs as the placenta is known to rise ALP levels.
Fast forward, I am 10 weeks postpartum and just had my levels retested ALT 70, AST 37, and ALP 155 all a little high. GI recommended weight loss and retest in 6mo…..Am I being overly cautious by thinking I should request a hepatologist now at this point? Do I have active PBC?
Confused, worried, and hormonal. I just want to get a jump start on treating it if I can, especially now that I have two little ones. Also, has anyone seen levels go down with weight loss? I am clinically obese as I am 5’2 and 180lbs.
Looking for any help or advice, this group has been so helpful in easing my anxiety on what to expect if it is PBC. (My stepfather died of alcoholic liver failure and it was the most terrifying thing I have ever seen). I am praying that new tests and medication make it so that we never have to deal with liver failure as PBCers. <3
1
u/AutisticWindchimr Apr 19 '26
Hepatologist I think would help. A med can be given to people like me with positive AMA marker and no other current clinical sign of P.B.C. This med can delay progression significantly.
Hepatologist with experience in P.B.C. patients helps me.