OpenHealth Q&A

Concerns Regarding Phlebotomy Care

I recently faced a situation that left me quite surprised since relocating from the United States to another country, particularly concerning a doctor's opinion on my health. To better understand the validity of their statements, I'm turning to others for insight on whether this perspective is unreasonable enough to warrant a search for alternative medical guidance. Here's a bit of background: I've been dealing with secondary polycythemia, which has arisen due to sleep apnea. For the past five years in the US, my condition has acted similarly to polycythemia vera. Although I'm JAK2 negative, my hemoglobin and hematocrit levels, along with my red blood cell and platelet counts, have been consistently on the rise, despite adhering to nightly CPAP therapy for this entire period. Prior to using the CPAP, my situation was dire, as my sleep study indicated I was halting breath approximately 86 times per hour, likely impacting my health for most of my life. This escalating condition leaves me feeling lethargic and unwell, and I have also developed erythromelalgia, which has become a major health issue since my diagnosis three years ago. The absence of regular phlebotomies results in increased redness and heat in my body, making it difficult to concentrate. At its peak, I experience a sensation akin to burning, especially when physical activity or excessive temperature challenges arise—leading to severe discomfort even at work. My medical records thoroughly document these issues, which the hematologist I consulted is already aware of. However, this doctor has declined to authorize therapeutic phlebotomies, claiming that in their country, there’s no standard procedure for treating secondary polycythemia, unlike polycythemia vera. Furthermore, there's virtually no clinical direction available for erythromelalgia, given its rarity. Historically, medical professionals in the US have tried various treatments before settling on a routine of CPAP usage combined with phlebotomy every 6 to 8 weeks. On a brighter note, one advantage of my new environment is the cooler climate, which has allowed me to engage in regular exercise, resulting in a loss of 7 kilos over the past three months and a marked improvement in my diet. For context, I am nearly 32 years old and male. Now, the crux of my inquiry: this doctor mentioned they would only entertain the possibility of a therapeutic phlebotomy if my hemoglobin levels exceeded 200 (20 gm/dL) and my hematocrit or EVF surpassed 54. Notably, my highest recorded hemoglobin was 186 (18.6 gm/dL) with a hematocrit of 53.8, at which point I felt extremely unwell. I have been led to understand that my situation might be approaching dangerous territory, potentially involving clotting or more severe complications. Am I irrational for questioning the authority of this physician, or is their approach indeed questionable?

Answers (1)

2/8/2026, 6:00:50 PM

OpenHealth AI

It's understandable to feel concerned about the management of your health conditions, especially when experiencing ongoing symptoms and navigating a new medical system. Your situation, involving secondary polycythemia and erythromelalgia, is complex, and it's essential to ensure you receive appropriate care.

Overview of Your Situation

1. Secondary Polycythemia: This condition can lead to elevated red blood cells due to factors like sleep apnea and requires careful management, especially with symptoms like fatigue and erythromelalgia.
2. Erythromelalgia: This rare condition causes severe pain and discomfort, often exacerbated by heat and exercise.
3. Current Doctor’s Recommendations: The local physician's threshold for therapeutic phlebotomy (only if hemoglobin exceeds 200 gm/dL) seems higher than what you've experienced as problematic.

Explanation of Your Concerns

• Your doctor’s reluctance to initiate phlebotomy until very high hemoglobin levels is not typical according to many guidelines, which often recommend intervention at lower levels, especially when symptoms significantly impair quality of life.
• Your past experiences and consistent records of feeling unwell at previous levels (186 gm/dL) indicate that your body's response to elevated hemoglobin is concerning.
• The potential risks of untreated high hemoglobin, such as clotting complications, further emphasize the importance of proactive management, ideally at levels lower than the threshold proposed by your current physician.

Next Steps to Consider

1. Document Symptoms and Levels: Keep a detailed record of your blood tests, symptoms, and any changes in your health, especially how you felt at various hemoglobin levels.
2. Seek a Second Opinion: Consider consulting another hematologist or a specialist with experience in polycythemia and erythromelalgia. They may provide alternative insights or management strategies that align more closely with your previous care in the U.S.
3. Discuss Additional Management Strategies: Explore other therapeutic options that might be available to you in your new location, such as medications that help manage erythromelalgia symptoms or alternative treatments for secondary polycythemia.
4. Lifestyle Modifications: Continue to embrace your new environment, including diet and exercise, while monitoring your hydration and stress levels, as these can contribute to your symptoms.

Reassurance

It’s not irrational to question your physician’s approach, especially when your wellbeing is at stake. Advocating for yourself is important, particularly when navigating a healthcare system that may not have the same protocols or approaches you are familiar with. Prioritizing your health and seeking a solution that addresses your specific needs is both reasonable and necessary. Should you need further clarification or considerations, feel free to ask.