so they finally found out what is wrong with me

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    jrvswim's Avatar
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    so they finally found out what is wrong with me


    Its been over a year since my low testosterone struggle began. At a recent endo I saw, he felt my liver and felt like it was enlarged so he ran an iron test. It came back way too high and he said that iron levels like mine can (and in my case almost def. do) interfere with LH and testicle function. The only way to lower the iron is to get weekly blood draws for a couple months, and then later every three months to maintain the lower iron levels.


    This guy literally spent an hour with me asking me tons of questions physical etc.
    Its a disease called hemochromatosis.
    He said sometimes testosterone and LH can bounce back after the iron is lowered but sometimes it doesn't and I might want to considered trt. He is the first doctor who has actually even entertained this idea and he is the first doctor who believes there is a physical problem and its not all in my head ----> keeping him!

    Has anyone had experienced with hemochromatosis? Once treated and iron levels were lowered did your t rebound as the LH was no longer surpressed?

    If anyone doesn't know about iron levels, here is a bit about how iron works in our bodies.

    Iron comes in but there is no bodily way (besides sweating a bit out) for iron to leave the body. In order to lower amounts in the blood, you need to give blood to over time, to water down the iron level basically.

    People with hemochromatosis absorb iron from their food at higher than normal levels.

    I'm only 21, and from what I have read that raises your chances of things bouncing back since I was normal only three years ago.

    So in short anyone have experience with this? especially it effected t levels ( a known side effect)


    Labs:



    Component Results
    Component Your Value Standard Range Units
    Ferritin 63 30 - 400 ng/mL

    Component Results
    Component Your Value Standard Range Units
    WBC 4.0 4.0 - 10.5 x10E3/uL
    RBC 5.42 4.10 - 5.60 x10E6/uL
    HGB 17.0 12.5 - 17.0 g/dL
    HCT 47.9 36.0 - 50.0 %
    MCV 88 80 - 98 fL
    MCH 31.4 27.0 - 34.0 pg
    MCHC 35.5 32.0 - 36.0 g/dL
    RDW 13.1 11.7 - 15.0 %
    PLATELET 230 140 - 415 x10E3/uL
    NRBC Not applicable
    Hematology Comments: Not applicable

    Component Results
    Component Your Value Standard Range Units
    TIBC 310 250 - 450 ug/dL
    UIBC 109 150 - 375 ug/dL
    Iron 201 40 - 155 ug/dL
    Iron % saturation 65 15 - 55 %

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    Wow thats interesting.. havent heard of such a thing before. At least you've got a diagnosis now! So a high iron level causes the liver to enlarge?

    Let us know how your treatment goes.. Obviously you probably wanna avoid any big source of iron.. and make your no supplements your taking have iron in them.
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    cant help you out but it seems like you have a dr that at least cared about finding the culprit. you got a keeper
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    Quote Originally Posted by jrvswim View Post
    Its been over a year since my low testosterone struggle began. At a recent endo I saw, he felt my liver and felt like it was enlarged so he ran an iron test. It came back way too high and he said that iron levels like mine can (and in my case almost def. do) interfere with LH and testicle function. The only way to lower the iron is to get weekly blood draws for a couple months, and then later every three months to maintain the lower iron levels.


    This guy literally spent an hour with me asking me tons of questions physical etc.
    Its a disease called hemochromatosis.
    He said sometimes testosterone and LH can bounce back after the iron is lowered but sometimes it doesn't and I might want to considered trt. He is the first doctor who has actually even entertained this idea and he is the first doctor who believes there is a physical problem and its not all in my head ----> keeping him!

    Has anyone had experienced with hemochromatosis? Once treated and iron levels were lowered did your t rebound as the LH was no longer surpressed?

    If anyone doesn't know about iron levels, here is a bit about how iron works in our bodies.

    Iron comes in but there is no bodily way (besides sweating a bit out) for iron to leave the body. In order to lower amounts in the blood, you need to give blood to over time, to water down the iron level basically.

    People with hemochromatosis absorb iron from their food at higher than normal levels.

    I'm only 21, and from what I have read that raises your chances of things bouncing back since I was normal only three years ago.

    So in short anyone have experience with this? especially it effected t levels ( a known side effect)


    Labs:



    Component Results
    Component Your Value Standard Range Units
    Ferritin 63 30 - 400 ng/mL

    Component Results
    Component Your Value Standard Range Units
    WBC 4.0 4.0 - 10.5 x10E3/uL
    RBC 5.42 4.10 - 5.60 x10E6/uL
    HGB 17.0 12.5 - 17.0 g/dL
    HCT 47.9 36.0 - 50.0 %
    MCV 88 80 - 98 fL
    MCH 31.4 27.0 - 34.0 pg
    MCHC 35.5 32.0 - 36.0 g/dL
    RDW 13.1 11.7 - 15.0 %
    PLATELET 230 140 - 415 x10E3/uL
    NRBC Not applicable
    Hematology Comments: Not applicable

    Component Results
    Component Your Value Standard Range Units
    TIBC 310 250 - 450 ug/dL
    UIBC 109 150 - 375 ug/dL
    Iron 201 40 - 155 ug/dL
    Iron % saturation 65 15 - 55 %
    Iron taken in serum reflect the daily amount you take in. you take an iron supplement it will be high or eat alot of red meat. Its ferritin levels that are the main compent for hemochromatosis. I see more likely hidden form of anemia such as b-12, copper, or b-6 with your CBC. I get a second opinoin on this seriously and test for specific genes C282Y and H63D with liver biosopy to confirm. I would look deeper before an actually conclusion would be rendered.
    I am not a medical Dr, please keep in mind that this answer is for information purposes only, and is not intended to diagnose, treat or replace sound medical advice from your physician or health care provider.

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