Patient Comments: Polycythemia (High Red Blood Cell Count) - Cause

Question:

What was the cause of your high red blood cell count (polycythemia)? Submit Your Comment

Comment from: Tigerlady, 65-74 Female (Patient) Published: October 01

I was diagnosed with polycythemia vera last year. I know several years of symptoms were related to this. Finally I had severe pain in my upper back that would spread through my body into my legs. It felt like the blood had been caught off and my body was screaming for blood. A spine doctor referred me to a gastrologist who found an enlarged spleen and high white and red blood cells. I went to an oncologist and found the mutated gene. I have no pain as before, but headaches, increasing bone pain in legs, dizziness, and cognitive issues. I am on HY chemotherapy and aspirin.

Comment from: Cindy, 55-64 Female (Patient) Published: June 04

I was diagnosed with polycythemia a year or two ago. I started taking aspirin, and was checked out, no JAK2 mutation. I saw a hematologist and my levels are all high so started phlebotomy. I have had all of the symptoms for years, and complained to my doctor, but they were just excused as menopause. I have been doing my own research and I was a graphic designer. I worked with a chemical called Bestine, to clean off layout boards. I wonder if any other designers are diagnosed with polycythemia.

Comment from: FTM , 35-44 Male (Patient) Published: May 22

I am on Reandron 1000 for FTM (female to male) transition and have a high RBC (polycythemia) due to this medication. Treatment is to perform venesection, every 2 to 3 months to keep it under control. Due to the venesections I am now also anemic. To avoid both these issues completely I would need to cease HRT (hormone replacement therapy). This is not an option at the present time. We also tried to split the dose into two 4 week doses instead of one 9 week dose. This has been ineffective. Going to try stretching half dose to 6 weeks.

Comment from: Alec, 19-24 Male (Patient) Published: September 10

I’m transgender (FTM) and my secondary polycythemia was caused by my testosterone hormone therapy. So far the treatment to lower this is to lower my testosterone dosage, lose weight, and therapeutic phlebotomy. Getting off of testosterone completely would also fix it, but that’s often not an option for transgender patients who opt for hormone treatments in the first place.

Comment from: Bill, 65-74 Male (Patient) Published: December 29

I probably had polycythemia vera for about 13 years but it was only diagnosed one year ago. I had two strokes during the past 13 years. I have had occasional phlebotomy treatment and take hydroxyurea, but continue to have symptoms. I was exposed to Agent Orange in Vietnam and wonder if this may be related. Current symptoms include a heart rate of about 30 beats per minute, although this can vary within a short period of time. I have chest pain at times when I exercise (run), but this subsides after taking a break and then re-engaging in the exercise. I have fatigue and lack of stamina. Hope this adds to your information about this disease.

Comment from: Cynthia, 35-44 Female (Patient) Published: June 04

I have lived with polycythemia vera with Jake 2 mutation. I use one raw garlic clove diced and swallowed for blood thinner. I've also started salmon three times a week and a low purine diet to reduce uric acid. I was taking Benadryl to reduce hives, now taking Allegra and it seems to be working. I've had high red blood cell count, platelets, and triple white counts. Garlic has been my life saver thus far.

Comment from: map, 45-54 Female (Patient) Published: February 11

Fibroids were the cause of my high red blood cell count (polycythemia). There were 17 of them but the primary one was very large with a stalk (pedunculated), which was the main trouble maker.

Comment from: DLWSr, 55-64 Male (Patient) Published: July 30

The doctors discovered my polycythemia vera (PV) 5 years ago after being hospitalized and treated 4 times for an aneurysm and heart attacks. The aneurysm was glued shut and they looked at numerous blood counts and finally realized I had a history of high red cell counts. I was given hydroxyurea and phlebotomies of a pint to 500 ml every 4 to 6 weeks. I eventually had a biopsy of my bone marrow done and was prescribed Pegasys interferon injections every week in my abdomen. My counts have stabilized and I no longer need phlebotomies but now suffer from fatigue and other issues that may or may not be attributed to the Pegasys. I had to medically retire due to a number of medical issues and unable to work. My depression from PTSD (post-traumatic stress disorder) and MST have failed to get better as I have found out that Pegasys may be making my depression worse. Although I am happy I no longer require phlebotomies I see that my wife and I must keep constant awareness of the side effects of the interferon injections.

Comment from: DBoe, 55-64 Male (Patient) Published: May 01

My polycythemia has pushed me into thrombocythemia, too many platelets. I have had a blood clot and a stroke and I am thankful I can still work and live. This is also due to a Jak2 defect that causes my bone marrow to make too many red cells and the platelets try to keep up. When I had my stroke 14 years ago, my blood was thicker than Karo syrup.

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Comment from: Chuck, 45-54 Male (Patient) Published: April 01

Jak2 gene mutation was the cause of my polycythemia. I have flushed face, headache, red eyes, dizziness, hard time concentrating, fatigue, double vision and a pain/weakness in left arm. First diagnosis was migraines but treatment didn"t help. After further blood tests it was found that I have elevated red and white blood cells. Tests revealed it was primary polycythemia vera due to the Jak2 gene mutation. Interesting fact about that gene is its proper function is to turn your bone marrow on when you have a trauma like a loss of blood to quickly make up the difference of lost blood cells that"s why it produces both white and red.

Comment from: Shanna, 45-54 Female (Patient) Published: October 15

My polycythemia is secondary to Sleep Apnea. I now use a C-PAP machine and oxygen at night and my RBC stays pretty normal.

Comment from: Jules, 55-64 Male (Patient) Published: August 31

We don't have confirmation of lung cancer yet as my 57 year old husband is going to CT scan on 23rd September. He went to the general physician (GP) as he had lost around 20 pounds in weight since beginning of summer and over the past 4 to 6 weeks some drastic muscle wasting. He wouldn't go to the doctors so I basically made the appointment and forced him. He said GP sent for bloodwork and referred to an oncologist. He doesn't have any other symptoms, just occasional whistle sound when he sleeps. I am more worried than he is and he just dismisses anything serious!

Comment from: Barb, 55-64 Male (Caregiver) Published: March 28

The doctor found too many red blood cells in my husband"s last physical. It is due to excessive alcohol over decades of abuse. The doctor says it can be reversed if my husband stops drinking. He also smokes. Does he care? No. Did he stop? No.

Comment from: GG, 65-74 Female (Patient) Published: July 12

My mother had PC and now I have been diagnosed with it. She passed away at age 83 after having it for five years. She was on Hydrea the last few years. We think that she quit taking the hydrea the last few months and she passed away with a massive blood clot. I have been undergoing phlebotomies for the last three months and seem to be doing well. From all I have read it seems that it is much better to do the phlebotomy rather than the Hydrea.

Comment from: petero, 45-54 Male (Patient) Published: May 19

I found out that I had polycythemia more than 10 years ago. I am nearly 50 now, but my blood count is erratic. It can be fine for a few months and then escalate rapidly. It varies weekly and quarterly. I used to smoke, but apparently this is unlikely to be the cause. I do get really tired at times, but I just have to live with it. No one else in my family suffers from this condition, but both my parents died from heart attacks. That might be a connection, my consultant says; maybe, maybe not. I wish I could avoid all the hospital appointments.

Comment from: Ian, 45-54 Male (Patient) Published: September 08

My problem was discovered during a search for the cause of severe back pains. The doctor and even a neurosurgeon had exhausted all the obvious. A blood test then revealed a highly elevated red cell count and when questioning me about my lifestyle, we found that I had many symptoms of secondary polycythemia. These included disturbed sleep, fluctuating blood sugar levels, bronchial infections, etc. At 48 years old, I was really glad this was found, as I have lost most of my family to chronic heart disease.

Comment from: kkkkkk, 25-34 Male (Caregiver) Published: May 16

My red blood cell count is 5.50, I am not sure if it is high.

Comment from: Ernan, 45-54 Male (Patient) Published: April 15

I am having surgery for stenosis, doctors don't seem concerned about my polycythemia and haven't done pre-operative tests regarding that.

Comment from: couldbfishin, 55-64 Male (Patient) Published: August 15

I am a 57 year old male who has never smoked. About three years ago my doctor told me the reason I was tired was that my testosterone (T) level was 26, the lowest he had ever seen. After a few months of rubbing cream on my shoulders, my T level had gone up only a few points, and remained way below normal for my age (600-700). After about a year of testosterone injections, my T level averaging about normal for my age, but I was tired once again. Blood tests showed I had high hematocrit and RBC counts and I was diagnosed with secondary polycythemia. I have been undergoing therapeutic phlebotomies for about two years and it seems to help. I started three times a week, then twice a week, then once a week, now I go every 3-4 weeks for a CBC and phlebotomy if my hematocrit is over 50. I felt a little sorry for myself a couple of times, but meeting people with cancer at the oncology clinic where my hematologist practices, cured me of that. Now I see my phlebotomies as a chance to meet some real nice people and to make them laugh for a while.

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Comment from: Elaine, 65-74 Male (Caregiver) Published: December 20

My husband's polycythemia was due to high platelet count, and he was found to have kidney cancer. The kidney was removed with no chemo or radiation. He is on hydroxyurea and has blood drawn periodically. He is 73.

Comment from: 45-54 Male (Patient) Published: February 06

I am a 45 year former pro athlete who was recently diagnosed with polycythemia. My hematocrit was higher than my doctor has ever seen, and I'm lucky to be alive. I had a DVT and a Pulmonary Embolism, but survived both of those 4 years ago. I am awaiting my first trip to the hematology doctor to get some blood taken.

Comment from: Sad Mom, 35-44 Female (Patient) Published: May 04

My Polycythemia has been found after having a number of miscarriages. Blood tests have revealed my Haeomocrit being high. I have been a lifelong smoker and this may have contributed to my condition. I’m pregnant again, and have had to quit smoking and go on Aspirin products to reduce my blood count in order for this baby to (hopefully) survive.

Comment from: Disgusted, 45-54 Male (Patient) Published: April 12

My red blood cell count shot up due to my receiving testosterone shots. I'm a 47 year old man who was feeling tired, anxious, and was advised by a 'Testosterone" specialist that my "T" level was low. A few months after taking the shots, the RBC shot way up, I had to donate blood to lower my level, needless to say, I've stopped receiving testosterone shots...Be wary people, it's not for everyone.

Comment from: lisag323, 45-54 Female (Patient) Published: February 25

I have just been diagnosed with polycythemis as a result of smoking.

Comment from: David, 55-64 Male (Patient) Published: February 23

As a child my body did not make enough Testosterone. My testicles were under sized and my breasts were larger than a normal boy should have. My childhood doctor thought I was failing my classes for attention. I failed the 4th grade and the 6th grade; I never graduated high school. I passed the GED test and joined the United States Navy. When I got out they told me I needed Testosterone injections for the rest of my life and that I would never have children. I began medication and I went to college. I graduated with honors. Testosterone also helps with brain function. I am now 64 years old and I have Polycythemia; a condition of long term hormone useage. I have been phlebotomized 14 times. I'm hanging in there.

Comment from: 45-54 Female (Patient) Published: October 04

I was having daily headaches and increased sweating and lethargy, then I experienced two episodes of splenic infarct. The hematologist tested me for leukemia and any other related disease, found elevated platelets and hemoglobin and the JAK2 mutation. I am a 45 y/o female diagnosed with primary polycythemia vera who has never smoked a day in her life. I am adopted and do not have a family history, but I have been told this disease can run in families.

Comment from: reedy888, 55-64 Female (Caregiver) Published: August 16

My husband has Polycythemia Rubra Vera. He was diagnosed in January 1994. He now has severe chills, high fevers, and extreme pain in his knees and arm bones. He has Leukemia but we don't know how far. We don't hear much about the final stages of this disease. Thank you.

Comment from: Donna, 45-54 Female (Patient) Published: November 18

As a student in a Medical Assistant program, I started noticing spikes in my blood sugar and elevated HCT levels, along with an aching kidney pain. I already have been diagnosed with osteoarthritis, so I thought that would be the primary reason for my joint pain. Diabetes is hereditary in my family, so I am going to get checked by my Dr. as soon as possible. Thankfully, we learn basic lab tests on each other in school with a Dr.'s supervision, so the results are accurate and can be used by the physician.

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