You are absolutely not crazy, and your feelings are completely valid. Unfortunately, many people with PBC have shared similar experiences of not being believed or being dismissed by doctors. You are not alone in this.
Here's something important to know: itching is one of the most common and well-documented symptoms of PBC Show Full Answer
You are absolutely not crazy, and your feelings are completely valid. Unfortunately, many people with PBC have shared similar experiences of not being believed or being dismissed by doctors. You are not alone in this.
Here's something important to know: itching is one of the most common and well-documented symptoms of PBC. Research shows that over 80% of people with PBC experience it. It happens because damaged bile ducts cause bile acids to build up in the bloodstream, which then triggers nerve endings in the skin — even without a visible rash. Slightly elevated ALT and Alkaline Phosphatase are actually significant flags for PBC, even if bilirubin is normal. Elevated bilirubin tends to appear in later stages, so its absence doesn't rule anything out.
It may be worth asking your doctor about:
- Testing for antimitochondrial antibodies (AMAs), which are found in about 95% of people with PBC
- A referral to a hepatologist who specializes in liver conditions
- Keeping a symptom journal to track when itching occurs and how severe it is If your current doctor isn't listening, it is completely okay to seek a second opinion. Advocating for yourself can feel exhausting, but you deserve a doctor who takes your symptoms seriously and investigates them properly.
You are not imagining this. Keep pushing. 💛
May 27
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