this is gonna be out of place for my blog but i'm a trans masc 3 years on T and last week i got diagnosed with the very early stages of polycythemia vera and just. i wanted to ask if stopping HRT will make it stop? i understand there's no cure but would stopping T make it stop progressing perhaps?
it may be a silly question but i'm just learning about it now and i think tumblr is a good place for getting answers for things like this
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Finally managed to take a pic of how much blood they take from me every 2-4 weeks.
(This is trans related, as it can occur to about 20% of afab ppl who are on testosterone injections that they produce too many red blood cells and need regular bloodletting.)
tw: blood
more info on why i have this done:
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Polycythemia can be diagnosed at any age, but it is more commonly observed in adults, particularly those over the age of 40. However, it can also occur in younger individuals, including children and adolescents, although this is less common.
Primary polycythemia (polycythemia vera) typically presents in adults, with the average age of diagnosis being around 60 years old. Secondary polycythemia, which is often caused by underlying medical conditions or environmental factors, can occur at any age depending on the underlying cause. For example, secondary polycythemia due to chronic lung disease may occur in adults of various ages, while congenital heart defects causing chronic hypoxia can lead to polycythemia in infants and children.
Overall, while polycythemia is more commonly diagnosed in adults, it can occur across a wide range of age groups depending on the underlying cause.
Diagnosing and treating polycythemia typically involves a combination of medical history assessment, physical examination, and laboratory tests.
Here's an overview of the diagnostic process and treatment options:
Diagnosis:
Medical History and Physical Examination: The doctor will ask about symptoms and conduct a physical examination, including checking for signs such as an enlarged spleen or liver.
Blood Tests: Laboratory tests, including a complete blood count (CBC) and blood smear, can help determine red blood cell count, hemoglobin levels, and other parameters. Elevated red blood cell count and hemoglobin levels are key indicators of polycythemia.
Additional Tests: Depending on the suspected cause, additional tests may be ordered, such as genetic tests for primary polycythemia (polycythemia vera) or tests to assess oxygen levels in the blood for secondary polycythemia.
Bone Marrow Biopsy: In cases where primary polycythemia is suspected, a bone marrow biopsy may be performed to examine the bone marrow cells for abnormalities.
Treatment:
Phlebotomy (Blood Removal): For many individuals with polycythemia vera, periodic removal of blood (phlebotomy) is the primary treatment. This helps reduce the number of red blood cells and lowers blood viscosity. The frequency of phlebotomy sessions is determined based on individual factors and blood test results.
Medications: In addition to phlebotomy, medications may be prescribed to help manage symptoms and reduce the production of red blood cells. This may include medications such as hydroxyurea, interferon-alpha, or ruxolitinib.
Aspirin Therapy: Low-dose aspirin may be recommended to help reduce the risk of blood clots, particularly in individuals with polycythemia vera who are at higher risk of thrombotic events.
Treatment of Underlying Conditions: For secondary polycythemia, treating the underlying cause is essential. This may involve managing conditions such as chronic lung disease, sleep apnea, or kidney tumors.
Regular Monitoring: Individuals with polycythemia require regular monitoring with blood tests to assess red blood cell count, hemoglobin levels, and other parameters. This helps ensure that treatment is effective and complications are detected early.
Lifestyle Modifications: Making healthy lifestyle choices, such as maintaining a balanced diet, staying hydrated, avoiding smoking, and staying physically active, can help manage polycythemia and reduce the risk of complications.
Treatment decisions are individualized based on factors such as the underlying cause of polycythemia, the presence of symptoms, and the individual's overall health status.
Get the best treatments for various diseases and full body health checkup at the best hospitals in India.
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I. Polycythemia Diagnosis:
A. Clinical Assessment:
• The diagnostic process for polycythemia commences with a thorough examination of medical history and physical condition to detect signs indicative of erythrocytosis, assess potential risk factors (e.g., smoking habits, family history of thrombosis), and uncover underlying causes.
• Special attention should be given to symptoms of hyperviscosity syndrome (e.g., headaches, dizziness), skin manifestations (e.g., erythromelalgia), and signs of organ enlargement (e.g., splenomegaly, hepatomegaly).
B. Laboratory Tests:
• Laboratory investigations are crucial for diagnosing polycythemia and understanding its underlying mechanisms. Essential tests include a complete blood count (CBC) with differential, examination of peripheral blood smear, and measurement of serum erythropoietin levels.
• Additional tests, such as JAK2 mutation analysis, bone marrow biopsy, and molecular testing for other mutations associated with myeloproliferative neoplasms (e.g., CALR, MPL), may be necessary to confirm the diagnosis of PV and rule out alternative causes.
C. Imaging Techniques:
• Imaging methods like ultrasound, computed tomography (CT), or magnetic resonance imaging (MRI) may be used to evaluate organ enlargement (e.g., splenomegaly, hepatomegaly) and identify potential underlying factors for secondary polycythemia (e.g., renal tumors).
II. Polycythemia Treatment:
Management of polycythemia aims to alleviate symptoms, lower the risk of thrombotic complications, and prevent disease progression. Treatment approaches may vary depending on the underlying cause and severity, often involving a combination of strategies:
A. Phlebotomy (Venesection):
• Phlebotomy is the primary treatment for PV, involving the removal of excess blood to achieve target hematocrit levels (<45% in men, <42% in women).
• Regular phlebotomy sessions usually start at diagnosis and are adjusted based on individual response and disease activity.
B. Cytoreductive Therapy:
• Drugs like hydroxyurea, interferon-alpha, and ruxolitinib may be used in PV patients who do not respond to or cannot tolerate phlebotomy.
• These drugs work by suppressing abnormal hematopoietic proliferation and reducing the risk of blood clotting, with hydroxyurea being the most commonly used and studied cytoreductive drug in PV.
C. Antiplatelet Therapy:
• Aspirin and other antiplatelet drugs are often prescribed to PV patients with a history of blood clots or other high-risk factors to lower the risk of arterial thrombosis.
• Aspirin is usually started at low doses (e.g., 81 mg daily) and may be combined with cytoreductive therapy for better thromboprophylaxis.
D. Treating Underlying Conditions:
• Management of secondary polycythemia focuses on addressing the root cause to relieve hypoxia-induced erythropoiesis and prevent disease progression.
• Interventions may include oxygen therapy for patients with chronic respiratory problems, correction of hemoglobin disorders or other genetic issues, and surgical removal of erythropoietin-secreting tumors.
E. Lifestyle Changes:
• Lifestyle adjustments such as quitting smoking, maintaining a healthy weight, regular physical activity, and proper hydration are vital for improving clinical outcomes and reducing cardiovascular risks in polycythemia patients.
Doctors suggest undergoing regular health checkups for the early diagnosis and treatment of polycythemia. You can choose to undergo a regular full body health checkup at Jaslok Hospital Mumbai, which is one of India's best hospitals for the early detection and management of blood disorders.
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Cw: medical talk, self-harm mention as a hyperbole (scratching skin)
Does anybody else on this platform have polycythemia? Especially trans masc folks or others taking testosterone HRT?
It's the only explanation I can find for my symptoms, but I feel like mine are way more intense than I've seen described, and I wondered if anyone has had a similar experience?
I do have elevated hemoglobin/hematocrit, but I was told it's not actually terribly out of range. The main symptom I'm grabbing onto here is the bit about "itching, especially after a hot shower" because there's no rash or swelling or any other visible reason for my itching.
Except, for me, it's itching any time my temperature is slightly elevated. Nevermind hot shower, I can't even take a warm one! I can't sit outside in the sun, I can't go for a walk or spend too long on my feet or exert myself in any way without it flaring up.
And if I get agitated (anxious, angry, stressed in general), I'm not sure if that makes my temperature rise or if something about that agitated state itself triggers it, but it flares up horribly, and then I spiral because the itching stresses me out and the stress increases the itching. But, if I lie down in a cool place and distract myself from whatever is upset me, it goes away fairly quickly?
And the sensation ranges from "itchy like a mosquito bite" to "itching-burning pain that makes me want to rip my skin off and that leaves me shaky and wanting to scream or cry".
Does this aound like what anyone else with polycythemia experiences?
I'm just. Really struggling right now. I feel like I can't leave home at all, because driving stresses me enough to trigger it but walking triggers it too. And don't even get me started on my job or housing related stress.
I'm miserable and itchy and in pain, and I just want to know if it is what I think it is, or if I need to look for other explainations that would have other treatments.
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Partial Exchange for Polycythemia in Neonates Calculator
Polycythemia, defined as a central venous hematocrit (Hct) level of greater than 65%, is a relatively common disorder. The primary concern with polycythemia is related to hyperviscosity and its associated complications.
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High red blood cell count
Pathophysiology of High red blood cell count.
Before understanding effect of High Red Blood Cell Count let’s See what is Normal Range of RBC. The Normal range of red blood cells in our body for male is 4.3 to 5.5 million per micro liter (µL) and for females it is 3.9 to 5.10 million red blood cells per (µL).
Slight more count beyond this range may not be causing any disease or may not cause any…
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I have a character that is genetically modified to make more blood. What are some problems that they might experience as a result? Also is this even possible? Thank You :)
You're not going to believe this but this is actually a real thing. Not the genetic modification exactly, but some people are born with a mutation that causes an overproduction of red blood cells (the oxygen-carrying component of blood and what is usually transfused when someone is given a blood transfusion).
The condition is called polycythemia vera. It's technically a cancer, but the condition itself doesn't kill people. There are some unpleasant symptoms and secondary conditions that warrant treatment, though.
In the early stages there are usually no symptoms. As red blood cell counts rise, the blood literally becomes thicker and moves more slowly, leading to high blood pressure, bruising, headaches, ringing in the ears, fatigue, dizziness, sweating, itchy skin, trouble breathing, pain in the hands and feet, and an enlarged and painful spleen.
The increased production and breakdown of red blood cells (PV doesn't break down blood cells directly- but since the marrow is making more, more break down in time) also causes an increase in uric acid. This is a metabolic byproduct generally peed out, but when there's too much of it it can cause kidney stones, gout, and stomach ulcers.
The easiest treatment for PV is bloodletting. If a person keeps up with regular removal of excess red blood cells (which are normal, so technically they could be transfused into someone else if other conditions are met), they can avoid symptoms for a long time. Later in life (80+) they may enter something called the "spent" phase of the illness, where their over-productive marrow has been replaced partially by scar tissue and they have trouble even making enough red blood cells to meet their own needs and end up with anemia.
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virtue and vanessa are insanely funny because virtue is obsessed with how cool vanessa is like "vanessa hi do you think im cool sorry what who said that" and vanessa is obsessed with how fucked up virtue is like "yeah sure hey btw have you gotten diagnosed with anything. multiple things. maybe all the things that can be wrong with someone"
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Shirtless in the work bathroom fo today <3
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getting iron pumped into me
(as opposed to pumping iron :p)
i have an iron deficiency, but i also have polycythemia from hrt (happens to around 20% or so of ppl who take testosterone via subq injections) so they gotta replace iron removed from my monthly phlebotomies.
i eat meat and tried supplements in the past but i simply don't absorb iron thru digestion, hence infusions.
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found out i've got secondary polycythemia so if any vampires are looking for blood to drink i've got plenty of extra
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Today in my search history:
polycythemia vera
difference between blush and flush
what does fluid in the lungs sound like
the chronicles of narnia
what temperature does asphalt burn at
what temperature does concrete burn at
fire color and temperature
converting Fahrenheit to Celsius
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Results came back from the bone marrow biopsy and PET scan. No cancer. There's other issues that are causing problems, but no cancer. Christ.
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hi gang i might have PV/leukemia ☹️ so that sucks for me. its not that serious bcuz im still young but if i have to get a bone marrow sample ill scream.
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