I posted this in another section, but you should read it so i'm posting it again. Maybe my mission in the world is to make other people aware. I'm not a doctor so there could errors in my account, but please read on:
when I first went to the doctor about 8 years ago and said, I noticed my hair is getting thinner, what could it be? He did a blood test and called me that night and said my iron was very low, to get on iron supplements right away. At that time my iron level (hemoglobin) was at 7.5. I did supplements, well granted I am terrible at taking pills, so ever so slowly my hemoglobin levels rose. Meanwhile, I didn't realize my periods were abnormally heavy and so all my pathetic pill taking attempts were like two steps forward, 1.5 steps back. Needless to say, the iron supplements did little to help, my hair got thinner, and I became more and more tired. I tried everything from ginseng to exercise to smoking to get energy. Well, as my energy dwindled, so did my quality of life. I am tired alll the time, my complexion is pallid and dull, I gasp going upstairs, and gave up on exercising as my arms would become numb and my left arm would even hurt. The doctors kept saying take the pills, or try birth control which I did, but it only served to make me feel ill. They started talking about hysterectomies....
Finally, I got this nice british doctor (i'm in the us) who tried a few things, then, after having not been to the doctor for 2 years, I went back and said I feel like crap basically so she decided to test me for other things. My hemo was 8.9 (up a little from the supplements 12 - 15 is normal), my ferritin was down to 2.5 (15 - 200 is normal though some hairloss researchers feel you should have 70-200), my serum iron was 27 (35 - 175 is normal) and my iron bidning capacity was up, 449 (250 - 400 normal but will go up to compensate to bind more iron). She sent me to a hemotologist who told me it's von willebrand disease, which is a genetic blood disorder and was further confirmed by the fact that my mother has a history of hemmoraging from her nose, uterus and gastrointestinally.
To make a long story short, I had the hair loss (telegon effluvium) with the follicle clumps at the end (my ponytail is the size of a dime now sniff), I have been exhausted for 8 years, I feel like i'm 70 when I should feel like i'm in my 30ish, my memory has gone terrible, I have no spunk anymore and all I want to do is lay around and watch movies. My hemotologist said the supplements weren't going to make a difference and immediatly put me on intraveneous iron which I will do for two hours, once a week for four weeks. She also is prescribing a nasal spray to use before my period to boost the protein factor in my blood that binds the iron.
There is hope, please get checked. If you relate to anything I described, forget your physician, go to a hemotologist. I should have done it years ago.
