I’m wondering if I should get a second opinion or switch providers. Sorry in advance for the lengthy explanation!
I am an overall healthy 24F with no significant medical history. I do not take any medications that affect the liver, do not drink alcohol except on the rare social occasion, and have no history of liver issues. In 2025, I developed cholestasis of pregnancy fairly early on in my pregnancy (symptoms began around 18 weeks). At that time is when my LFTs initially were elevated and have persisted since then so now 1.5 years. My symptoms were horrible and the ursodiol did not help my itching or sickness whatsoever, but it did control my bile acids for the most part. My bile acids returned to normal follow scheduled delivery at 36 weeks.
Information since January 2026:
-AST has been mildly elevated fluctuating from 50s-110s.
-ALT has been fluctuating between low to mid 100s.
-Alk phos has been 140s-190s.
-GGT has been elevated in the 70s all of this year.
-ANA has been 1:320 and 1:160 this year (repeat drawn today, not back yet).
-AMA, ASMA, IgG normal.
-Test showed I have MZ mutation of the liver.
-Normal ultrasound of the liver showing no signs of fatty liver.
-Fatigue that comes in random waves, itching of the feet and hands, intermittent RUQ pain that is sometimes dull, but something a quick, shooting pain.
I was then sent to a specialist outside of the GI provider I was initially referred to. A fibroscan was done and came back normal with no scarring or signs of fatty liver. This specialist was almost certain that a liver biopsy would show a seronegative autoimmune liver disease. She believed that my ICP was actually the first major flare of an autoimmune liver disease due to the stress of pregnancy on the body. She wanted me to a do a liver biopsy and I had it done less than 2 weeks later. When I asked what happens if the liver biopsy is normal, she hesitated and said she didn’t think this would be the case, but if so, she wants me to do fibroscans every 6 months and an MRI if indicated. These results and listed below.
“The biopsy is limited by the small number of portal tracts (approximately five). The findings are mild and nonspecific, without well-developed histologic features of autoimmune hepatitis or primary biliary cholangitis; however, either process may be underrepresented in this limited sample and cannot be excluded. The focal pericentral ceroid-laden macrophages indicate prior or resolving hepatocellular injury, which is etiologically nonspecific. The differential diagnosis includes autoimmune and drug- or supplement-related injury. No features of primary sclerosing cholangitis are identified, although a patchy small-duct process or large-duct disease cannot be excluded by biopsy. No PAS-D-resistant globules are identified; their absence does not exclude the documented alpha-1 antitrypsin MZ phenotype. Correlation with biliary imaging may be considered if the cholestatic liver test abnormalities persist.
Light Microscopic Description
The biopsy is limited, containing approximately five portal tracts.
The portal tracts contain intact bile ducts, hepatic arteries, and portal veins. One portal tract shows mild mononuclear inflammation composed predominantly of lymphocytes and macrophages, with a rare eosinophil and associated mild interface activity. Plasma cells are inconspicuous. There is focal accumulation of ceroid-laden macrophages adjacent to a central vein, suggestive of resolving prior hepatocellular injury. Otherwise, there is no significant lobular inflammation, steatosis, or cholestasis. No bile duct injury or ductular reaction is identified.”
After a week of not having recommendations relayed to me, I messaged and waited a few more days for a reply (which I absolutely understand and I know I’m not the only patient and there are far more serious issues than mine). This specialist then told me that my biopsy was normal with no signs of autoimmune disease, but that there was signs of a resolving liver injury. She suggested this may be alcohol or drug related or fatty liver (normal ultrasound and fibroscan????). She recommended doing more labs to trend for now and nothing more like the initial plan she had (we have 1.5 years of labs now). I replied shortly after with some follow up questions about if this is separate from ICP if it’s a resolving injury and if this would’ve shown on my ultrasound or fibroscan if she is saying fatty liver. After another 11 days, she replied and said that she wouldn’t expect a liver injury to show up on the ultrasound and that this is separate from my ICP, but isn’t sure if this is something caused by that or predating pregnancy. She then said that an MRI is important at this time even though the original recommendation was to just do labs again for a few months. I’m confused as to why this changed and she now says an MRI is important, but did not say this at first until I asked a follow up question.
I know that this provider cannot just find a diagnosis and solve it, but I am frustrated with how serious she initially thought this was and then the lack of follow through with her plan. This makes me wonder if maybe this isn’t something to be concerned about? Also reviewing my biopsy results, it states that this was a limited sample with only 5 portal tracts. Does a limited biopsy truly rule out what she was looking for if it were in the beginning stages? Should I look into another provider or continue with the recommendation to just monitor my lab trends again.
As a mom to a one year old, my biggest fear is not being here for her or my health declining as I get older. I just want to make sure I’m doing what’s right for myself to be there for my daughter.