First post here (after reading for a long time)
After five years of elevated LFTs (always AST and usually ALT), ultrasounds and MRIs (with normal results), I finally had a biopsy two weeks ago, because as an athletic, mid-30's, non-drinker, non-smoker, non-diabetic, non-celiac, non-hyperthyroid... my doctor was totally stumped by my continued poor labs.
I've had GI pain on and off for years as well as occasional periods of bad itchy skin, metallic mouth taste and fatigue (yet EXTREMELY poor night sleep with constant waking). I was also recently 'diagnosed' with rosacea (some suggestion of larger auto-immune issue I suppose), and have been dealing with pretty uncomfortable flushing / burning face and eye inflammation for the last year.
Long story short, I received a very rare diagnosis of Obliterative Portal Venopathy (OBV) with mild Nodular Regenerative Hyperplasia. My doctor has never seen it before and we've been working with colleagues to determine next steps. There's extremely little research out there. No one can suggest a treatment. But you more or less are at risk of the end-stage liver failure outcomes (portal vein hypertension... varices... etc), even though there's no cirrhosis of the liver. With my biopsy, supposedly there is even no sign of any fatty liver composition, and just mild inflammation (likely producing the poor LFTs -- all other liver levels like Alb and Bili are normal). But no one can provide a prognosis. It's mainly a future of keeping and eye on complications.
But since the biopsy, my stomach pain has become much worse. I feel sick after every meal - nauseous and swollen. The fatigue is extreme too. And I have had pretty constant pain, even two weeks later, at the biopsy site (although the stomach pain after eating is both right and left in the upper abdomen). All this said, I'm 100% conscious of the fact that stress/anxiety around the liver issue could be at least contributing to the symptoms. But the pain is real. I've also been trying to gain weight, so I've (literally) been forcing myself to consume more calories for the last couple of months (although never eating large meals... doing many many small meals of good quality food throughout the day), so the whole system has had more to do lately (and yet the weight gains have been... slow).
Part of the follow-up at this stage was a full abdominal ultrasound last week to confirm there are no clots in the portal veins - a necessary item to rule out. I'm hopeful the results will provide some clarity and call out any issues that could be causing the pain, or any issues from the biopsy.
But has anyone had similar experiences? This rare diagnosis? Prolonged discomfort after a biopsy?
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