Understanding Hemolytic Anemia: What’s Behind It?
Greetings – I was diagnosed with hemolytic anemia fourteen years ago. Throughout this journey, I have consulted with five different hematologists, including two specialists from Mayo Clinic. Recently, they suggested that I consider having my spleen removed, even though my spleen has never shown any signs of enlargement, alongside a potential gallbladder removal. This situation escalated following my second pregnancy, which coincided with my administration of the Rhogram vaccine; my first pregnancy had normal hemoglobin levels. Currently, my baseline hemoglobin rests around 9, but it can plummet to between 5 and 7 during infections. Typically, I lose about two grams daily when fighting off an infection. Various illnesses, including cold, flu, COVID-19, as well as lack of sleep and significant stress, necessitate blood transfusions. Notably, my Coombs test returns negative, as do all results from the Agios genetic screening, although I am a carrier of Guillain-Barre syndrome. While on prednisone, I did achieve a hemoglobin level of 11. I also underwent four rounds of Rituxan in December, which left me severely ill, experiencing influenza A, B, and then COVID in quick succession, which led to three emergency room visits for transfusions. Now, I also contend with secondary hemochromatosis; my ferritin levels fluctuate steeply between 800 and 4,000, although both iron and iron binding tests appear normal. My reticulocyte count is at 16% absolute, with slight spherocytes visible in my blood smear that my doctor believes could be a result of transfusions. B-12 levels are normal, and while my creatinine is slightly elevated, all other indicators in my kidney panel remain normal. My bilirubin levels tend to vary between 7 and 12, with a baseline of around 2. Both MCV and MCH readings are consistently high. This raises the question – what might be at the root of these issues? I am extremely apprehensive about the prospect of having my spleen removed, especially since my episodes seem to arise from infections. Furthermore, my insurance has denied coverage for IVIG, and my doctors have indicated that it likely wouldn’t provide relief. Can you help clarify this for me? Is it possible that my spleen is offering a level of protection that remains unseen? Would you truly consider removing an organ based solely on a physician’s assessment of potential benefits? I am hopeful for insights on this matter. ❤️
Answers (1)
7/19/2025, 6:50:39 PM
OpenHealth AI
Thank you for sharing your detailed health journey and the specific concerns you have regarding hemolytic anemia and the potential splenectomy. Your situation is complex, and it’s understandable to seek clarity, especially given the length and seriousness of your diagnosis.
Main Points:
- Hemolytic anemia can worsen with infections, and your spleen may play a protective role.
- Weighing the risks and benefits of splenectomy is crucial, especially considering your history and current health status.
- Monitoring your symptoms and seeking a second opinion from a specialist may provide further guidance.
Explanation: Hemolytic anemia occurs when red blood cells are destroyed faster than the body can produce them. It can have various causes, including autoimmune issues, infections, or underlying health conditions. The spleen is involved in filtering blood and can sometimes contribute to the destruction of red blood cells. Its removal (splenectomy) is sometimes considered when it's believed that the spleen is causing significant destruction of red blood cells, but it's not without risks. Removing the spleen can increase susceptibility to infections and other complications, particularly for individuals like you, who already experience fluctuating hemoglobin levels during infections.
Your situation is complicated by secondary hemochromatosis, experiences of severe illness after treatments like Rituxan, and the varied levels of your bilirubin and ferritin. It's important to understand the full scope of your health when considering surgery, especially with the protective role your spleen might play against infections.
Next Steps:
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Discuss Risks and Benefits: Have an open, detailed discussion with your hematologist specifically about the rationale for the proposed splenectomy and how it aligns with your symptoms. Ask about both short-term and long-term implications, especially concerning your infection history and hemoglobin levels.
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Seek a Second Opinion: If you haven't already, consider consulting another hematologist with a focus on rare blood disorders or autoimmune conditions. Another expert's perspective could provide valuable insights or different management options.
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Track Your Symptoms: Keep a detailed log of your symptoms, hemoglobin levels, and any triggers for your anemia (like infections). This information can help your healthcare providers better understand your condition and tailor treatments more effectively.
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Explore Other Treatments: Talk about alternative treatments or management strategies that might help stabilize your hemoglobin without resorting to surgery. Options could include medication adjustments, lifestyle changes, or possible clinical trials.
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Assess Infection Management: Work with your healthcare team to optimize your approach to preventing infections, as this is a critical aspect of your health that seems related to your anemia.
Remember, your feelings and concerns about surgery are valid. It’s crucial that any decision respects your health goals and comfort level. Take your time to gather information and ensure you feel fully informed before making a decision. If you need more details or support breathing through your current situation, don't hesitate to reach out. 💖
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