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I can relate so well to your story. I am so sorry you feel bad, but glad some medication helped. I had a Ferritin Level of a 1, same symptoms as you. I am a 41 year old female, 2 kids and exercise regularly, mainly running, but not excessive exerciser. I was originally diagnosed in October 2006. I travel so much for work that I had to go on disability because my doc thought I might fall asleep while driving. I was on disability for about two months and multiple tests were run; everything you can imagine. Nothing was found. Oral iron made me too sick so I lost weight. I am about 5'5" and weigh between 105-110 lbs. I used to weigh about 115 lbs so I really haven't lost that much weight, I'd rather sleep than eat because I keep hoping I will wake up one day and be rested.

The reason for giving so many physical details is to say from all of the specialists that are working on me, many had differing opinions. My internist is a friend (fortunately) so she quickly referred me to a GI doc for a colonoscopy and later to a hematologist. The GI doc swears I have anorexia because nothing showed up in the colonoscopy. My internist thinks he is ridiculous because I have weighed about the same my whole life. Other doctors thought maybe I was exercising too much and concerned about the level of oxygen getting to my brain and told me not to get my heart rate up like I used to do. No running, skiing, basically any physical exercise for risk of losing iron. Some of my friends know about my low iron and there are actually a couple of aquaintances I know of that also have low iron, I don't think as low as ours, and they are both runners with body types similar to mine. I began feeling so bad I was begging for infusions. I have had about 8-12 infusions to date. I began in Jan 2007, one per week, and think they went until April 2007. You know brain fog I can't remember.

After infusions, I felt great! However, I had two reactions during two separate infusions. I did my infusions at a cancer center and they really watched me for any reactions-not fun. I had energy and was able to be a normal person for a while. My highest ferritin I think was a 92. I have Ferritin checks every 3 months at the hematologist and every month at the internist. My levels began declining as soon as the infusions stopped. I'm just not able to hang on to the iron. I had my most recent lab performed, December 10, 2007. I have a ferritin level now of a 7. I go back to the doctor tomorrow, December 17.

I wish I had an answer for us. Please get the medical testing done, rule out what you can and monitor your iron. What is strange now is that my hemoglobin is normal, but iron is low. I feel ok and wouldn't have know I had low ferritin without the monitoring. The benefit I think will be increasing the ferritin before I start feeling so ill (like last year) and think monitoring is the most proactive thing we can do after testing.

I have not missed a single day of work due to low iron since my leave so hope you get to feel better too. I'll post again if I find out anything new tomorrow.

Take care

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