Monday 5 November 2012

Please follow me - This could be you!

To raise awareness of Hemochromatosis/Iron Overload. Please read my blogs

1 comment:

  1. I'm searching for haemochromatosis stories and testimonies as the medical field isn't addressing it very well and stumbled upon your story.
    I have hemochromatosis that I discovered by going to the Doctor (NOT, just kidding, Doctor didn't have a clue as to why I hurt except the general thyroid/arthritis/physical therapy/pills to mask). Every year I had blood drawn for annual physical, but ferritin not tested (?), cheap test and quickly read.
    I actually found out from 23andme which when 23andme shown to the doctor he said insurance probably wouldn't pay for a iron Test (they did).
    Ferritin was at 675 and I had >20 phlebotomy sessions, first time blood was so thick and not coming out to well, very thick and dark, nurse said she had never seen blood so dark and thick like pudding. I control as best I can Iron intake by drinking green tea, and eating more vegetables/little red meat/avoiding vitamin C.
    Some level of pain and movement of joints got somewhat better but pain is my constant (I thought everybody was in pain like me).
    My current problem is my heart. Shortness of breath, heart palpatations, blood pressure all over the place, and chest tightness. Got the general diagnosis like Family Doctor from Cardiac Doctor. Asked him about hemochromatosis and its involvement. Said it can harden the heart and then he let it go. HHHMMMPHHH. Hardened heart would mean not flexible and wouldn't pump like a flexible heart. Blood thicker than meant to be, again not a Doctor but something to look at. Even the stress test revealed left side of heart has problems and that is classic HH, found that out searching the web, not from Doctor. Trying to find a Cardiac Doctor familiar with Hemochroatosis, not easy. I applied for a medical marijuana license and interview doctor stopped interview, reached across the table to shake my hand and apologize for my Doctor not diagnosis me and causing irreversible damage.
    That's my journey and story. Awareness of this blood disorder needs a platform, actually just screen and test for it.

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