Understanding Polycythemia: A Personal Experience
Rare Case of Erythrocytosis/Polycythemia Hello, everyone. I’m seeking opinions and insights concerning my condition of erythrocytosis. Here’s a brief overview of my situation: I am a 30-year-old male. At 28, during a standard lab assessment, I discovered elevated levels of hemoglobin (Hb), hematocrit (HCT), and red blood cells (RBC). My Vitamin B12 was found to be quite high at 1618, while my serum ferritin measured 76. At that time, my erythropoietin (EPO) level was 6.65 (normal range: 4.3-29). Subsequent tests, including kidney function tests (KFT), liver function tests (LFT), ultrasound, arterial blood gas analysis, and ECG, all returned normal results. Additionally, my serum lactate dehydrogenase (LDH) was within the normal range. I had my peripheral blood examined for mutations in JAK2 exons 12-15, CALR, and MPL, all of which came back negative. My physician recommended phlebotomy to help reduce my hematocrit levels. Over the past two years, I have undergone phlebotomy ten times and also had a bone marrow biopsy. Both the biopsy and aspirate results returned normal; the only noteworthy finding was a decrease in my iron stores, potentially due to the frequent phlebotomies. The cytogenetic tests were also normal. I was retested for JAK2 exons 12-15, CALR, MPL, and BCR-ABL from bone marrow blood samples, and again, all came back negative for these mutations. Currently, I am facing elevated serum LDH levels (470, with a normal value being <240), along with high serum total protein (8.4, normal range 6-8), and an increased serum albumin level (5.1). Additionally, for the past three months, I have noticed frothy urine, although my creatinine level is normal at 0.74. Recent urinary albumin-to-creatinine ratio (UACR) and urine protein-to-creatinine ratio (UPCR) tests showed results of 17 and 102, respectively. I would greatly appreciate any insights or advice regarding my situation.
Answers (1)
6/30/2025, 6:30:57 AM
OpenHealth AI
It sounds like you're dealing with a complex situation involving erythrocytosis, and I can understand how concerning this may be for you. Your situation involves increased red blood cell production, as evidenced by your high hemoglobin and hematocrit levels, and requires careful monitoring and management. Let’s break down your situation and focus on actionable steps.
Main Points:
- You have a history of erythrocytosis with multiple investigations yielding normal results.
- Recent lab findings indicate elevated serum LDH and total protein levels, as well as frothy urine.
- You have undergone multiple phlebotomies, leading to potential iron depletion.
Explanation:
Erythrocytosis can result from various causes, including factors related to oxygen availability (like altitude), increased erythropoietin production, or primary bone marrow disorders. Since your tests negative for common mutations associated with primary polycythemia vera, this indicates that your erythrocytosis might not be related to a primary hematologic disorder. The frothy urine you mentioned could suggest proteinuria, which may be a sign of underlying kidney issues or transient conditions.
Elevated LDH can indicate cell turnover or tissue breakdown, while increased total protein and albumin may reflect dehydration or chronic conditions affecting your kidney function. The frothy urine alongside elevated protein levels indicates that further evaluation may be needed to assess kidney health.
Next Steps:
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Monitor Symptoms: Keep track of symptoms like frothy urine, changes in urination patterns, and any new symptoms that arise.
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Stay Hydrated: Ensure you maintain adequate hydration, as this can help with kidney function and possibly affect urine protein levels.
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Balanced Nutrition: If you are experiencing iron depletion from frequent phlebotomies, consider incorporating iron-rich foods into your diet (such as lean meats, beans, and leafy greens) while monitoring your iron levels with your healthcare provider.
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Follow-Up on Urinary Symptoms: Schedule a follow-up to discuss the frothy urine and elevated protein levels with your healthcare provider. They may recommend further tests like a comprehensive metabolic panel or a renal ultrasound to assess kidney function.
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Regular Blood Testing: Continue routine blood tests to monitor hemoglobin, hematocrit, and other relevant parameters, and discuss any abnormalities like LDH increases with your doctor to determine the next steps.
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Review Phlebotomy Frequency: Since you've undergone multiple phlebotomies, consult your healthcare provider about the frequency and necessity of these procedures, especially regarding your current ferritin levels.
Being proactive in your management is key. Don’t hesitate to reach out to your healthcare team with any concerns or changes in your condition. Let me know if you have any more questions, or if you’d like to delve deeper into any specific aspect of your condition.
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