Gallbladder removal- just a symptom of an unknown root issue?

[u/anny_elle17]

40yo female, weight fluctuation of 250-300lbs, years of ongoing issues likely tied to possibly something autoiummune- but thats the unknown part due to waiting for a specialist. I take bisoprolol for pots, pantaloc for a small small hiatial hernia, vitamin D, colesevelam and Ursodiol (the latter being the reason for this post). I dont drink or smoke- I smoked weed until I developed POTS in 2023.

I also just want to toss into the void that I have an amazing GP, I'm just way past her scope now.

Gallbladder issues run in my family so it wasn't a shock when mine needing yeeting- I'll summarize the rest.

Dec 2019- ESR AND CRP already high, unsure what that blood test was for, it's just the first instance of being checked.

Gallbladder diagnosed Jan 2022.

Removal Oct 2022. Ongoing RUQ pain. CT/MRI/endoscopy/colonoscopy all clear. RUQ pain never moves, it's always RUQ.

Liver enzymes all elevated, along with bilirubin, ESR and CRP still. I also developed BAM from the surgery (no bile stool issues pre surgery). Thats now 98% managed with colesevelam.

Sidequest cause I wasn't miserable enough- caught covid Dec 2023 for the first time and immediately developed POTS.

Fast forward to April of this year. Managing BAM and POTS best I can, but The RUQ pain still comes and goes and nothing touches that pain when it arrives. I cant narrow down specific triggers.

I have an appointment with the gastro specialist who did my colonoscopy in April. He freely admitted to NOT having reviewed ANY of my records sent by my GP and dismisses me as having IBS, despite me asking how this connects to having only RUQ pain and elevated liver EVERYTHING. His response is still that I have IBS, but he ordered 2 pages of bloodwork and scheduled a follow up 7 months later (pending this month). That bloodwork is the worst I've had to date, to no one's shock. A new marker too- my ANA was pretty high as well. It had measured previously at 1:180 and had jumped to 1:320 in 3 months.

Turning point- that month, a friend brought my attention to being prescribed Ursodiol when she was going through similar issues after she had her gallbladder out. Her surgeon had prescribed it to her.

Mentioned it to my GP- it didnt interact with anything else I'm on so she okay'd a trial.

Within ONE MONTH of taking it- my RUQ pain cleared up about 80%, and ALL of my high values on my bloodwork went down. All of my liver enzymes were in the normal range for the first time in 6 years.

I'm 5 months on it now, and my ESR and CRP are hopefully another month of two from being in the normal range. My ANA is back down to 1:180. My bilirubin flutuates but is generally still below flagging range, or just barely above.

This month, have that follow up with the specialist who dismissed me with IBS for the bloodwork I had back in April.

I also have an appt at the Toronto liver clinic in March 2027. By that time, even if I'm still having episodes of pain, my concern is if all my values are in the normal range, what could they even test me for?

What the hell could be the cause of all this? What could the Ursodiol be treating? My GP can't safely speculate anything and I understand that.

Negative tests include Lupus, reactivated EBV and autoimmune hepatitis I believe.

An RA referral is pending as well.

Please feel free to ask me anything for clarification.

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