Concerns Regarding Potential Polycythemia Vera Diagnosis
25-year-old male | Occasional smoker | No significant health problems I find myself in a complicated situation with conflicting opinions from various healthcare professionals regarding my potential diagnosis. In January, my complete blood count (CBC) displayed the following results: - Hemoglobin (HGB): 17 - Hematocrit (HCT): 50 I visited a hematologist (referred to as Hem-1) who recommended that I undergo testing, including an erythropoietin (EPO) assessment and a myeloproliferative neoplasm (MPN) reflex panel. The results were as follows: - EPO level: 6.6 - MPN panel: All tests returned negative for the mutations tested (Jak2 V617F, Exon 12, CALR, MPL, BCR/ABL1). Hem-1 advised me not to worry excessively and suggested donating one unit of blood, with plans to revisit around late June with updated results. Yesterday, I received my latest results, which indicated: - Hemoglobin: 16.2 - Hematocrit: 48.3 Although I intended to discuss these findings with Hem-1, he was unavailable, so I saw another hematologist (Hem-2) who presented an intriguing interpretation of my situation. Hem-2 explained that while I do not exhibit signs of MPNs, my normal EPO level suggests that secondary polycythemia can be excluded (since EPO would typically be elevated in such cases). He concluded that my condition might signify a primary variant of polycythemia vera (PV). Additionally, I noted that before these recent events, my blood work from 2021 showed values of Hemoglobin: 16.8 and Hematocrit: 49. This raises a question: if I indeed have PV, why have my levels not escalated over the past two years? Furthermore, can an EPO level of 6.6 genuinely rule out smoking as a contributing factor to my blood counts? I would appreciate any insights into my situation!
Answers (1)
6/28/2025, 6:50:43 AM
OpenHealth AI
Your situation regarding the potential diagnosis of polycythemia vera (PV) can understandably feel overwhelming, especially with the different interpretations from various healthcare professionals. It's important to focus on the key points and clarify what steps you can take next.
Main Points:
- Your latest blood tests show stable hemoglobin and hematocrit levels, which is encouraging.
- The normal erythropoietin (EPO) level supports the conclusion that secondary causes of polycythemia are less likely, though smoking can be a contributing factor.
- The current lack of significant escalation in your blood counts over the past two years raises questions about the nature of your condition, whether PV or another issue.
Explanation:
- Erythropoietin and Polycythemia: EPO is a hormone that stimulates red blood cell production. Elevated levels often indicate that your body is responding to low oxygen levels (like from smoking or other health conditions). A normal level typically suggests primary causes, such as PV, rather than secondary causes like smoking.
- Primary vs. Secondary Polycythemia: Primary PV is a condition where your bone marrow produces too many red blood cells without a compensatory mechanism (like low oxygen). In secondary polycythemia, levels are elevated due to external factors (e.g., chronic hypoxia from smoking or other diseases).
- Stability of Levels: The stability of your hemoglobin and hematocrit values over two years, even in the context of a suspected primary PV, is atypical for what would usually be expected if the disease were progressing. This could suggest your body has reached a sort of equilibrium.
Next Steps:
-
Monitor Symptoms: Keep an eye out for any symptoms of polycythemia vera, such as headaches, dizziness, visual disturbances, or high blood pressure. Tracking these can provide valuable information for your next appointment.
-
Continued Communication with Hematologists: Continue discussing your concerns openly with both Hem-1 and Hem-2 when you see them next. Express your questions about the lack of progression in your blood levels and how smoking may be influencing your condition.
-
Lifestyle Adjustments: If you're an occasional smoker, consider reducing or quitting smoking altogether, as this can improve overall health and potentially influence your blood cell counts. If you need support or resources to quit, there are many programs and tools available.
-
Regular Monitoring: Follow up on regular blood tests as recommended, and ensure you keep track of any changes in your health.
-
Consider a Multidisciplinary Approach: If you continue to feel uncertain or unsettled by the conflicting opinions, speaking with another specialist or a second hematologist may provide further clarity.
Your health is your top priority, and while conflicting opinions can be confusing, staying informed and proactive will help you navigate your diagnosis effectively. Let me know if you have any more questions or need further clarification!
Related Questions
Understanding Tuberculosis Exposure Risk
A 26-year-old male, who neither drinks alcohol nor smokes, seeks to understand the implications of exposure to tuberculosis (TB). As an anesthesia technician, I became concerned after I encountered a TB-positive patient about a month ago. I had to enter the patient’s room several times to perform blood gas tests. On my first entry, I mistakenly wore my N95 mask incorrectly due to the hectic nature of attending to multiple rooms. From my research, it appears that TB is quite transmissible; direct exposure can pose a serious risk of infection. Transmission usually requires prolonged contact with an infected individual, particularly in a close or face-to-face setting. In this case, the patient was lying face down and appeared to be sleeping when I entered. I have already undergone testing for TB, but I am eager to deepen my understanding of the risks involved in these situations.
24M | Unexplained Fainting Incident
**Note:** I previously shared this story, but it was inexplicably removed. I’m a 24-year-old male without any medical diagnosis or prescription medications. While I do consume alcohol occasionally, I hadn’t been drinking before this happened. Around 3 a.m., I got up from bed to use the restroom. As soon as I began to urinate, I suddenly felt a wave of dizziness. The next moment I was aware of was regaining consciousness in the bathtub, startled awake by the sensation of something dripping on me—only to discover it was my own blood. This was my first experience with fainting. When I came to, confusion set in. I was disoriented and couldn’t comprehend why I was being dripped on while in what I thought was my “bed.” Strangely, I also imagined that I was lying on a collection of marbles (which I actually don’t own)—this turned out to be the shattered glass of my shower door lying around me. I’m uncertain whether I lost consciousness first and then fell, or if the fall caused my brief blackout. It took me a few moments to understand why I was in the bathroom at all. I’m not sure how long I was out; I only remember it was around 3 in the morning when I initially got up, and about the same time when I regained consciousness. I dialed 911, and the ambulance arrived promptly. They checked my vitals, performed an EKG and measured my blood sugar, finding nothing unusual. At the emergency room, they repeated the vital checks, conducted a CT scan, drew blood, and took x-rays—yet still no abnormalities were detected. I had several cuts on my face and left arm (curiously, this is the arm that would have been turned away from the door), along with bruising around my ribs. Since the incident, I’ve been suffering from headaches and pain in my ribs. I received stitches on both my face and arm. The nurse suggested I could have stronger pain relief, but I opted for just Toradol. They eventually discharged me, stating, "We’re unsure what caused this, but return if it happens again." What might have triggered such an incident? How can I safeguard against it reoccurring if they remain uncertain about the cause?
Healing Progress Post-GBS: Toe Concerns
I am a 28-year-old male, measuring 5 feet 10 inches and weighing 131 pounds. My current medications include Fomadatine and Zyrtec, prescribed due to my ongoing battle with Chronic Gastritis and SIBO. I maintain a healthy lifestyle, abstaining from both smoking and alcohol. My health concern revolves around the toe adjacent to my pinky toe on my left foot, as well as my pinky toe on the right foot. Since August of last year, I have been on the mend from Guillain Barre Syndrome. Recently, I've noticed that at night, the skin on my feet tends to turn a reddish pink, although this usually improves after I walk around. However, two of my toes have remained red, with one appearing slightly swollen. Generally, my pinky toes are quite thick, but the condition of my left foot's toe is worrisome for me. It seems that I'm unable to upload an image to illustrate my issue.
Challenges with Appetite and Discomfort While Eating — Difficulty in Gaining Weight
As an 18-year-old male, I find that I become satisfied after consuming rather minimal amounts of food. This situation presents a considerable challenge, particularly since I only need to have a standard breakfast, lunch, or dinner to feel completely satiated for the remainder of the day. My goal of increasing my weight has made this issue even more complicated. When I limit myself to one meal per day, I often face weight loss or an uncomfortable sensation of fullness that leaves me feeling sluggish. Opting for two meals makes me feel excessively bloated, distracting me from my daily responsibilities. Moreover, I suffer from an unusual issue with my throat, where almost any food I consume causes discomfort, as detailed in the list below. I have contemplated focusing on having just lunch while continuing my weightlifting regimen to maintain my current weight and gradually build muscle. What advice could you offer? Could there be an underlying cause for these symptoms? Lastly, would it be wise for me to consult a healthcare professional? Foods That Cause Discomfort: Bread, flour, pizza, fruits, sugary or starchy items, seed oils, chips, and essentially everything else. Foods That Are Tolerable: Rice, salads, chicken, fish, and vegetables. Overall Symptoms Include: * Quick satiety after normal meals * Challenges in gaining weight * Bloated and lethargic sensations when consuming more than one meal * Persistent throat sensitivity to a wide variety of foods
Seeking Insights: My Journey with Undiagnosed Neurological Symptoms
Hello everyone, I'm a 34-year-old female grappling with neurological symptoms that first appeared in October, and I’m eager to hear from anyone who might have faced similar challenges. My journey began with unexpected migraines, blurred vision, and an ongoing sensation of being off-balance or intoxicated. Gradually, I began experiencing mainly sensory-related symptoms, such as tingling and burning sensations, feelings of extreme heat and cold, sharp pains radiating in my arms and back, as well as discomfort in my hands and toes, alongside intermittent numbness. I also endure varying degrees of weakness and heaviness in my right side, specifically my arm and leg, although I haven’t suffered complete functional loss. The nature of my symptoms is erratic; they fluctuate rather than consistently deteriorate. An MRI revealed mild, scattered lesions in the white matter, which were deemed nonspecific. Further tests from a lumbar puncture returned normal results, showing no markers of inflammation, and the oligoclonal bands were not present. A thorough range of lab tests yielded no significant findings. After evaluating my case, the neurology team suggested a possible diagnosis of MS and administered a three-day course of intravenous steroids. While I noticed a slight improvement in some sensory pain, my symptoms persist and continue to vary day by day. I still experience headaches and pressure in my head along with episodes of blurred vision, but there have been no new deficits since treatment. I am reaching out to connect with others who have had similar experiences. I would like to learn about the insights or diagnoses you encountered and what treatments proved beneficial (such as those related to migraine disorders, dysautonomia, or sensory neuropathy, for example). If you have navigated a similar path, I would greatly appreciate your sharing your story. Thank you!