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Hello. First time poster......I have a few questions I'd like to put out there for anyone who could answer.......
I am a hard working, health conscious, good eating 35 year old woman and have been feeling like complete garbage for about 3 years. It got to a point that I could not live a normal life. I was EXHAUSTED all the time, always out of breath, had no energy, chronically constipated, hair falling out in clumps, depressed, had debilitating brain fog, always weak, severely heavy periods and passed large 3 and 4 inch clots, and had no interest in my the activities I normally loved.
I went to so many doctors over the past few years, and they would tell me I was fine, slightly anemic, with my hemoglobin ranging from 10 - 10.5, so I would take iron for a few months, and never feel any better. They only prescribed me birth control for the periods and then even suggested it was mental and gave me prozac, which I did not take because I knew deep down it was PHYSICAL, I was not depresed, just sick. I got to a point that I had no life any longer..It took all the energy I had to go to work, then I would come home and lay on my couch and fall asleep.
Then I got to a point where I HAD IT !!!! I wanted my life back . I had gone to so many dr's (gyno, gp, gastro, nuerologist) and I finally made an appointment with a decent endocronologist who took the time to sit down and talk to me and really listened. He took 7 vials worth of blood. He tested for things other than the standard CBC and basic TSH that other doctors tested for. The results showed that I was anemic, Hemoglobin level of 8.9, and my ferritin level was 2. My 'sedementation' TIBC rate was 3 ???? (IF that sounds right). Additionally, when my T3 / T4 was checked, I showed to have levels that were off, indicating a thyroid problem. This was 2 weeks ago.

He prescribed me Trinsicon , which is an iron / B12 supplement with intrinsic factor (what that is, I have no idea) and Armour thyroid. And I have lived the best 2 weeks of my life. I feel energetic, I can think again, I am motivated, I am able to walk up the stairs without almost passing out..... I feel like I woke up out of a 3 year nap..........I feel like I have my life back !!!!!

So here are my questions, for anyone who knows medical information....... Could my periods alone have caused my iron to go down to a 2 ??? Could there be other causes ? How come doctors didn't previously test my ferritin ? How long will it take to get my ferritin levels back up ? Did anyone ever hear of Trinsicon , and what is intrinsic factor? Do ferritin levels that low require me to get iron infusions intrevenously ? Should I ask the doctor to give me iron infusions ? I have lost so much hair.........when will it grow back ? And most importantly, how long will it take for my ferritin levels to get to normal ?

The lesson I have learned from all of this is that we need to manage our OWN healtcare......... Most doctors only prescribe the basic blood tests, and do not bother to listen .........They are so quick to assume it is mental and your are a hypochondriac........ I blame the loss of the pasta 2 years of my life on doctors that did not listen . So, if anyone has any answers, I'd really love to hear......
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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