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niaheany--I know you must be terrified, I know I was. Have you seen a Hematologist/blood specialist? If you are not having any luck with the doctor that you are seeing maybe you should try a new one. Hopefully there are answers and you need the right person to find them. You have ruled out a heck of a lot of things at this point.

I was not able to store iron until my Hgb was around 13 and higher. I know that the Hgb has to stay high in order to absorb into the ferritin. I stayed at a 6 ferritin for the most part. This was due to either not taking iron at all, too low of a dose or taking it with food. And not fixing the bleeding source i.e., my periods. I had resistant iron deficiency anemia. Your symptoms sound typical but extreme for a low ferritin especially over many years.

There are many types of iron out there. I had to take one that is especially designed for people that get GI upset. It also has Vitamin C already in it so you don't have to take it in addition to the supplement. I was extremely ill from Ferris sulfate. I would try different kinds of iron in high enough strength and see if that works for you.

I'm sorry I'm not able to give you any information other than what I have already. Please try to stay strong. There is a lot of support for you here on this board as you go through this rough time. Keep us posted. FLFLOWERGIRL:)

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