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Hi Tina and welcome to the boards :)

I can't answer ALL of your questions, but with so many people on this board who have had a variety of experiences i'm sure someone can help you with the more complex queries you have. Basically, rest in the knowledge that so many of us have experienced either all that you have experienced or at least a fair portion of your experiences.

It took me 6yrs to find out and make connections between my symptoms and the causes and i didn't find out anything from any gp which was worth sharing on any healthboard!! The things of benefit i found out have been through my own research and through this healthboard. I started over on the 'hair problems' section of the board as that was pretty much the only symptom i had back then. I blamed it on the sodium lauryl/laureth sulphates in shampoos, my doctor blamed it on stress, i saw a dermatologist who said i had a very healthy scalp and healthy hair folicles, my diet was good, i didn't smoke, only had the odd glass of wine every so often, i used to exercise moderately. My instinct was that something was very wrong, but after doing blood tests my gp would simply say "everything is fine". I was clueless as to iron and it's low effects on the body and i only learnt about that in the 'hair problems' section of the board. Finally i changed doctors as i moved to a new town and by this stage i was experiencing excessive tiredness. Simply eating breakfast wore me out and i would have to lay down to gather up the energy so that i could change my clothes. This was when i found out my ferretin was 8 so i hate to imagine what people with a lower ferretin are going through.

That was a year and a half ago and earlier this year i declared that something had to be done about this hair loss business. I now had a little more energy due to taking an over the counter liquid iron supplement, but i still didnt feel 'normal'. After being poo pooed by gp's regarding info i had found via my research, i then went on the hunt for a Trichologist (hair/scalp specialist). On the phone i asked him a few what i thought were 'trick' questions and he passed my little test and i went to see him.

My ferretin has moved up, ever so slowly, but i'm feeling so much better. Still experiencing the hair shedding, but that wont stop until the ferretin gets much higher. My doctor and most educated doctors will tell you that ferretin needs to be 70+. Now keep in mind that we are all individuals and there is a possibility that your hair will improve at eg: ferretin of 40 or 50 , but some of us might have to push it up to 70. You wont see results the moment your ferretin hits that magic number. What will happen is once your ferretin reaches the right figure for your hair growth, you will have to stay stable at that figure or higher so that hair will stop its shedding and then will start it's growing cycle. This can take 3 - 6 months and in some people up to 12 months. Some people are fortunate enough that their ferretin has increased quite quickly with supplements, whilst the rest of us are doing it one step at a time and it's a slow process. Some of us have even gone forward on one blood test, but by the next blood test we may have gone backwards a little. It's really a wait and see game. But the moment you start taking iron supplements you wont see results in a few weeks regarding hair. Hair is the first to often suffer due to low iron and the last to see results as our body views hair as a non essential organ in the scheme of things. If you do see any results, the first ones might be a little more energy. Any additional iron stores go always firstly go to bone marrow and other key organs along the way, while energy, hair/skin/nails get it last.

Iron is a strange thing b/c it hasn't affected my nails, but has affected myhair, while my friend is the opposite and her nails are like paper with very bad ridges and her hair is nice and thick. She eats poorly and can't be bothered to cook for herself so that explains her situation, while i cook and eat fresh foods and do all the right things and my iron is rubbish.

One other thing i did learn from visiting this Trichologist is that the years of low iron have affected my thyroid and now it's improving as my iron improves, my vitamin D was lower than the lowest figure recommended on the blood test results as was my iodine, my zinc was low but not extreme. With the zinc test, i looked ok on the serum zinc, but later when he ordered a red cell zinc test i was actually low. So at the end of the day it's a matter of getting everything tested, but knowing what sort of test to have as clearly with some things you can appear normal in one type of test and low if they do a different form of test.

I'm sure you will find lots more info on this board and there will be others who can answer more of your questions or share their personal experience as it will vary from person to person. All the best with your recovery process :)
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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