Diagonosed with Polycythemia Vera and on TRT?

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    Diagonosed with Polycythemia Vera and on TRT?


    I am not a regular poster but have been a member for a while.

    I am 53 and got diagnosed last August 2010 with Polycythemia Vera (PV)and am Jak 2 positive. This means its the nasty PV which is partly due to a defect in the Jak2 gene. I say partly due because I had this gene for 53 years before it kicked off PV.

    I had a CBC last August and HCT was 56 and haemoglobin 197 and on further checking the Jak2 test was positive so its PV. Right now by venisecting by HCT is 46 and haemoglobin 154 so its cool for now except the venisections I get every month to keep counts down makes me anaemic
    with iron and ferritin 1/2 of minimum, not sure how this is affecting my helath apart from fatigue and maybe hairloss. However the big risk is the PV can turn to more serious blood conditions or leukemia. Second big risk is clotting as PV changes the stickines of the platelets.

    Ok so shock over, now what to do because I am on Testim Gel, thyroid meds,DHEA 25mg, Hydrocortisone 10mg, melatonin 0.1mg. I developed hypogonadism in 2005 and have been on the above since then.

    I see a Oncologist who specialises in detoxing the body and making people healthy so that their own body can fight the disease (PV) better.

    He maintains that I need to come off the hormones because they are causing inflamation in the cells, also as we know testosterone can increase production of red cells which is not helpful for those with polycychemia.He is also concerned about prostrate in future.

    Coming off hormones is asier said than done of course. He maintains that I developed hypogonadism in 2005 due to chemicals stuck to my DNA (this is backed up with labs that show that the chemicals are on my DNA and proof that these chemicals block production of hormones, so quite convincing). He also maintains that a severe inbalance in EFA's and shortage of good fats in my cells (again labs show this), mean I cant produce hormones naturally, he also maintains that the hormones I take are buring up the good fats in my cells hence compounding the situation. On the DNA test I had it also showed that DHT was stuck on my DNA

    I have been getting blood infusions to detox the chemicals which is working and I have been on a dietary regime to increase the good EFA's and fats I need to make hormones, this has been going on for about 4 months.

    Ok so thats the story, the easy bit. The hard bit is what to do about the hormones, if anything??

    The questions I have are.

    1. Are the hormones especially (testosterone)I take causing inflamation in the cells and how much can these hormones aggravate the PV, also hydrocortisone they say lowers immune, not good if true. Also people with PV are more prone to other cancers, my PSA is 1.3 so no problems now but has to be considered.

    2. Is taking HCG instead of testosterone (or part HCG/part T)any safer for my condition and is it likely to produce less red cell production than the testim gel.

    3. Assuming I have to come off the hormones what is best way to do it and which ones first, I am starting to cut down the hydrocortisone very slowly now. I have tried without testosterone for a day or so in the past and its a disaster so I either need to take it some other way eg. HCG or restart my system. The Oncologist doesnt appreciate how hard it is to come off.

    So any informed view would be much appreciated.

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    Quote Originally Posted by 1Ainslie View Post
    I am not a regular poster but have been a member for a while.

    I am 53 and got diagnosed last August 2010 with Polycythemia Vera (PV)and am Jak 2 positive. This means its the nasty PV which is partly due to a defect in the Jak2 gene. I say partly due because I had this gene for 53 years before it kicked off PV.

    I had a CBC last August and HCT was 56 and haemoglobin 197 and on further checking the Jak2 test was positive so its PV. Right now by venisecting by HCT is 46 and haemoglobin 154 so its cool for now except the venisections I get every month to keep counts down makes me anaemic
    with iron and ferritin 1/2 of minimum, not sure how this is affecting my helath apart from fatigue and maybe hairloss. However the big risk is the PV can turn to more serious blood conditions or leukemia. Second big risk is clotting as PV changes the stickines of the platelets.

    Ok so shock over, now what to do because I am on Testim Gel, thyroid meds,DHEA 25mg, Hydrocortisone 10mg, melatonin 0.1mg. I developed hypogonadism in 2005 and have been on the above since then.

    I see a Oncologist who specialises in detoxing the body and making people healthy so that their own body can fight the disease (PV) better.

    He maintains that I need to come off the hormones because they are causing inflamation in the cells, also as we know testosterone can increase production of red cells which is not helpful for those with polycychemia.He is also concerned about prostrate in future.

    Coming off hormones is asier said than done of course. He maintains that I developed hypogonadism in 2005 due to chemicals stuck to my DNA (this is backed up with labs that show that the chemicals are on my DNA and proof that these chemicals block production of hormones, so quite convincing). He also maintains that a severe inbalance in EFA's and shortage of good fats in my cells (again labs show this), mean I cant produce hormones naturally, he also maintains that the hormones I take are buring up the good fats in my cells hence compounding the situation. On the DNA test I had it also showed that DHT was stuck on my DNA

    I have been getting blood infusions to detox the chemicals which is working and I have been on a dietary regime to increase the good EFA's and fats I need to make hormones, this has been going on for about 4 months.

    Ok so thats the story, the easy bit. The hard bit is what to do about the hormones, if anything??

    The questions I have are.

    1. Are the hormones especially (testosterone)I take causing inflamation in the cells and how much can these hormones aggravate the PV, also hydrocortisone they say lowers immune, not good if true. Also people with PV are more prone to other cancers, my PSA is 1.3 so no problems now but has to be considered.

    [B]Inflammation would be more from the lack of cortisol then testosterone.
    Testoserone in some case can be a pro or anti inflammatory it is case specific. This one you would need to consult with your dr about. I know in cancer state or remission that urologist prefer people not to be on testosterone as there is a chance if they did not get all the cancer the testosterone can feed its growth. PSA is not really a proper evaluation for cancer as noted in several studies.


    2. Is taking HCG instead of testosterone (or part HCG/part T)any safer for my condition and is it likely to produce less red cell production than the testim gel. Natural production or exogenouse have the same impact. With HCG ou are at the mercy for increased e2 conversion from with in the testciles
    3. Assuming I have to come off the hormones what is best way to do it and which ones first, I am starting to cut down the hydrocortisone very slowly now. I have tried without testosterone for a day or so in the past and its a disaster so I either need to take it some other way eg. HCG or restart my system. The Oncologist doesnt appreciate how hard it is to come off.

    That I can not tell you but i would stay on HC to keep inflammation at bay.
    With the testosterone there is no easy way to taper. If you are gels it takes about 3-5 days to be at the lowest point.

    So any informed view would be much appreciated.
    in black

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