Navigating Post-Vaccine Cholangiopathy Concerns
Age: 29 Gender: Female Height: 5’5" Weight: 170 lbs Ethnicity: Caucasian Symptoms Duration: 5 years Background Medical Conditions: Hashimoto’s thyroiditis, suspected small duct primary sclerosing cholangitis (PSC) or primary biliary cholangitis (PBC), polycystic ovary syndrome (PCOS), obsessive-compulsive disorder (OCD) Medications: Levothyroxine 200 mcg, Liothyronine, Ursodeoxycholic acid (URSO), Tirzepatide I am feeling quite disheartened and would greatly value any guidance or support to keep seeking answers rather than giving up. A part of me is tempted to stop consulting liver specialists, yet another part still yearns to continue the search for a resolution. Approximately 30 minutes after receiving the COVID vaccine, I experienced my first instance of vomiting bright yellow bile in a parking lot, and I have been throwing up bile daily for the next 3.5 years. Medications like Phenergan and Zofran have provided no relief. In 2021, a liver biopsy indicated “peri-bile duct fibrosis,” leading my doctor to conclude it was PBC. I was treated with URSO for a year, yet my liver enzymes remained abnormally high, and I had no detectable antibodies. Every six months, I underwent liver ultrasounds or MRCP scans, all of which were consistently described as "unremarkable." By 2022, a new liver specialist consulted with a panel regarding my biopsy results and revised the diagnosis to small duct PSC. I ceased taking URSO, but my liver enzyme levels increased further. Despite having my gallbladder removed—pathology confirmed it was healthy—I continued to vomit bile, and follow-up ultrasounds and MRCPs yielded normal results. In 2023, after relocating and seeing a different liver doctor, I received the PBC diagnosis once more. They recommended restarting URSO, which finally led to normalization of my liver enzymes, despite the scans remaining unremarkable and antibodies still absent. Due to insurance complications, I recently had a new liver doctor who expressed skepticism about the biopsy and suggested I undergo another one, claiming the need for updated liver histology. They conducted extensive lab tests and forwarded them to the Mayo Clinic for further evaluation. I’ve been researching this condition and suspect I might be experiencing a post-vaccine autoimmune cholangiopathy, given the unclear nature of my actual diagnosis—whether it’s PBC or PSC. **Post-COVID Vaccine Autoimmune Cholangiopathy** has been documented in medical literature, with potential manifestations including bile duct inflammation and bile acid imbalance. Associated symptoms can encompass nausea, vomiting, elevated liver enzymes, and bile duct injury. I am keen to find a specialist in liver injuries. Are there professionals who focus on this? Is that even a recognized field? Am I deluding myself? I truly desire assistance, yet I feel close to surrendering, particularly after the painful experience of the liver biopsy. I am reluctant to endure another, especially if biopsies are not entirely conclusive. What purpose do they serve? Would it be detrimental for me to cease consultations with liver specialists entirely? Could I simply walk away from this? Thank you for your attention and insights.
Answers (1)
7/8/2025, 8:31:13 PM
OpenHealth AI
I understand that you are feeling disheartened and overwhelmed with your ongoing health issues related to bile vomiting and liver conditions, particularly your concerns about post-vaccine cholangiopathy. It's completely normal to feel uncertain during such a challenging time. Your journey so far has been difficult, but it's important to remember that seeking further answers can lead to improved management of your symptoms.
Key Points:
- You have a complex medical history involving potential liver conditions that might be linked to autoimmune responses.
- There is documented evidence of post-vaccine autoimmune reactions, and it’s valid to explore this in relation to your symptoms.
- It's crucial to maintain some level of medical care rather than ceasing consultations entirely, even if it's frustrating at times.
Explanation:
Your symptoms after receiving the COVID vaccine, including consistent bile vomiting, raise valid concerns about possible vaccine-related effects on your liver. Your experience with multiple diagnoses such as PBC and PSC, along with the results from liver imaging and biopsies, highlight the complexities of these conditions. While liver biopsies can be painful and sometimes not definitive, they can still provide valuable insight into the progression of diseases and help tailor your treatment plan.
Next Steps:
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Continue Liver Consultations: Rather than stopping all consultations, I encourage you to keep following up with liver specialists, particularly as they may be better equipped to evaluate your changing condition. If you feel uncertain about your current doctor, you could consider seeking a second opinion from a specialized center focusing on autoimmune liver diseases.
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Seek Specialized Care: Look for specialists at academic medical centers or large research hospitals with a focus on autoimmune liver diseases. Institutions like the Mayo Clinic often have teams who specifically handle complex liver cases and may have insights into post-vaccine complications. You can check their website or contact them for referrals.
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Express Concerns Thoroughly: When meeting with your liver doctor, be open about your concerns regarding your diagnostics and the possibility of post-vaccine autoimmune cholangiopathy. Make sure to ask about the rationale for any proposed biopsies and how they would impact your treatment or understanding of your condition.
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Document Symptoms: Keeping a symptom diary can be beneficial. Note the frequency and severity of your symptoms, any correlations with medications or activities, and any side effects from treatments. This information can aid your healthcare provider in making informed decisions about your care.
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Mental Health Support: Given the emotional toll of your symptoms and medical conditions, consider seeking support from a mental health professional. This can help address feelings of despair and provide you with coping strategies.
While continuing to seek answers may feel exhausting, it can also be a path to finding relief and improving your quality of life. You're not alone in this journey; reaching out for professional support is a strong step toward advocacy for your health. Please let me know if you have more questions or need further guidance.
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