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Old 01-16-2013, 10:31 AM   #1
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Erythrocytosis and Hemachromatosis Questions

Hello,
This is my first time posting, and I'm glad to be here, since I have many questions and I hope I can improve my situation after 10+ years of no answers. I'm 51 year old female, with high hct noticed 11 years ago, along with high blood pressure. At the time, my hemotologist did all the tests for Polycythemia Vera, but the tests didn't confirm PV or other causes for the raised HCT. The bone marrow biopsy showed erythroid hyperplasia. We tried plebotomy, however my uncooperative veins and thick blood make it very difficult to draw the blood. After getting only 1/2 bag, the blod clotted, and then I felt VERY weak for 2 days afterwards. So, I've only been on a baby aspirin all these years, with monitoring via CBCs. HCT has stayed between 45 and 48. I've felt fairly well until a year ago. With the onset of pre-menopausal symptoms, I've been blaming my fatigue, moodiness, depression, insomnia, and heavy periods on those darned hormones.

But then last March I had a mild heart attack. The cardiologist said I have a "muscle bridge" where the muscle crosses over an artery, and I had a spasm in my heart muscle that cut off the blood supply long enough to cause some damage. They don't know what caused the spasm, as I was just sitting at my computer, but I'm on cardiac meds that have controlled the issue - with no more problems since then.

Last year we also discovered I have one gene for hemachromotosis. Here are my current blood counts:
HCT 45.7 (H)
RDW 15.1 (H)
Transf 288 (H)
Ferritin 8 (L)
All other numbers in the CBC and Iron Studies are normal.
My hematologist didn't want to do anything, but when I told him I was very tired and had an extremely sore tongue several times last year, he said I could "try" taking some iron. I think he's concerned it will raise my HCT too high, since I seem to have two different issues going on, and they conflict. I just started taking 1/2 tablet of iron per day.

I asked him if this may be related to B12 deficiency and he said "no". Does anyone else have similar issues with 2 different conditions, and how do you achieve balance? Thanks in advance for your help/advice/support!

 
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Old 09-11-2013, 08:17 PM   #2
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Re: Erythrocytosis and Hemachromatosis Questions

Quote:
Originally Posted by LovesDogs3 View Post
Hello,
This is my first time posting, and I'm glad to be here, since I have many questions and I hope I can improve my situation after 10+ years of no answers. I'm 51 year old female, with high hct noticed 11 years ago, along with high blood pressure. At the time, my hemotologist did all the tests for Polycythemia Vera, but the tests didn't confirm PV or other causes for the raised HCT. The bone marrow biopsy showed erythroid hyperplasia. We tried plebotomy, however my uncooperative veins and thick blood make it very difficult to draw the blood. After getting only 1/2 bag, the blod clotted, and then I felt VERY weak for 2 days afterwards. So, I've only been on a baby aspirin all these years, with monitoring via CBCs. HCT has stayed between 45 and 48. I've felt fairly well until a year ago. With the onset of pre-menopausal symptoms, I've been blaming my fatigue, moodiness, depression, insomnia, and heavy periods on those darned hormones.

But then last March I had a mild heart attack. The cardiologist said I have a "muscle bridge" where the muscle crosses over an artery, and I had a spasm in my heart muscle that cut off the blood supply long enough to cause some damage. They don't know what caused the spasm, as I was just sitting at my computer, but I'm on cardiac meds that have controlled the issue - with no more problems since then.

Last year we also discovered I have one gene for hemachromotosis. Here are my current blood counts:
HCT 45.7 (H)
RDW 15.1 (H)
Transf 288 (H)
Ferritin 8 (L)
All other numbers in the CBC and Iron Studies are normal.
My hematologist didn't want to do anything, but when I told him I was very tired and had an extremely sore tongue several times last year, he said I could "try" taking some iron. I think he's concerned it will raise my HCT too high, since I seem to have two different issues going on, and they conflict. I just started taking 1/2 tablet of iron per day.

I asked him if this may be related to B12 deficiency and he said "no". Does anyone else have similar issues with 2 different conditions, and how do you achieve balance? Thanks in advance for your help/advice/support!
I went to court aug 22 this year metal detecto went off only when he put it under my left arm research shows HEMACHROMATOSIS I can not afford to go to the dr but I got all the stmptoms of HEMACHROMATOSIS

 
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Old 09-12-2013, 08:34 AM   #3
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Re: Erythrocytosis and Hemachromatosis Questions

Loves dogs-there is no way you have hemochromatosis with a ferritin of 8. Your HCT is likely high because of something else, and I would strongly suspect low oxygen levels stimulating the excess RBC formation. I would suggest four things: get a sleep study done for sleep apnea, which causes low oxygen at night. Make sure your oxygen saturation is checked every time you see Dr. for anything, and get some pulmonary function tests done. A 24 hr pulse oximetry, done at home, is an easy test too, that measures your oxygen thru 1 day and night and can be a good screening for sleep apnea and other hypoxic problems. When hypoxic, your RBCs increase in an attempt to deliver more oxygen to tissue. If you solve the oxygen problem, the HCT comes down to normal and prevents complications from thick blood.

Last edited by ladybud; 09-12-2013 at 08:35 AM. Reason: correction

 
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Old 09-12-2013, 11:27 AM   #4
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selena4467 HB User
Re: Erythrocytosis and Hemachromatosis Questions

Quote:
Originally Posted by LovesDogs3 View Post
Hello,
This is my first time posting, and I'm glad to be here, since I have many questions and I hope I can improve my situation after 10+ years of no answers. I'm 51 year old female, with high hct noticed 11 years ago, along with high blood pressure. At the time, my hemotologist did all the tests for Polycythemia Vera, but the tests didn't confirm PV or other causes for the raised HCT. The bone marrow biopsy showed erythroid hyperplasia. We tried plebotomy, however my uncooperative veins and thick blood make it very difficult to draw the blood. After getting only 1/2 bag, the blod clotted, and then I felt VERY weak for 2 days afterwards. So, I've only been on a baby aspirin all these years, with monitoring via CBCs. HCT has stayed between 45 and 48. I've felt fairly well until a year ago. With the onset of pre-menopausal symptoms, I've been blaming my fatigue, moodiness, depression, insomnia, and heavy periods on those darned hormones.

But then last March I had a mild heart attack. The cardiologist said I have a "muscle bridge" where the muscle crosses over an artery, and I had a spasm in my heart muscle that cut off the blood supply long enough to cause some damage. They don't know what caused the spasm, as I was just sitting at my computer, but I'm on cardiac meds that have controlled the issue - with no more problems since then.

Last year we also discovered I have one gene for hemachromotosis. Here are my current blood counts:
HCT 45.7 (H)
RDW 15.1 (H)
Transf 288 (H)
Ferritin 8 (L)
All other numbers in the CBC and Iron Studies are normal.
My hematologist didn't want to do anything, but when I told him I was very tired and had an extremely sore tongue several times last year, he said I could "try" taking some iron. I think he's concerned it will raise my HCT too high, since I seem to have two different issues going on, and they conflict. I just started taking 1/2 tablet of iron per day.

I asked him if this may be related to B12 deficiency and he said "no". Does anyone else have similar issues with 2 different conditions, and how do you achieve balance? Thanks in advance for your help/advice/support!
I don't have any med insurance I went to my disability hearing and the metal detector went off every time he scans on my left side under my arm I researched and it came up with hemochromatosis I did not have anything on metal that day I got all the symptons I guess im just waiting to die im real low sick can not get no help im n scooba ms

 
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Old 09-12-2013, 12:47 PM   #5
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Re: Erythrocytosis and Hemachromatosis Questions

The treatment for hemochromatosis is removing blood, so donating blood if your local blood bank will accept it is a way to get treatment without paying for it. Donating blood as often as you can will help remove the excess iron stores eventually.

 
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Old 09-12-2013, 01:46 PM   #6
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selena4467 HB User
Re: Erythrocytosis and Hemachromatosis Questions

I just call the blood bank will giving the blood make me feel better im so scared

 
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