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Thread: Iron

  1. #1
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    Default Iron

    How many of you have had low iron levels? And what kind of iron worked/works for you? Pills? Or infusions?
    And have any of you had low blood counts? Not enough blood? Did you get a blood transfusion and did it help and how long?

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    When dx, our daughter had a red blood count of less than 5... For her age should be more than double that. She did receive transfusion in the hospital - almost all pediatric cases I know of have had transfusions. She was on iron until her blood count stabilized; I think it was about 9 months. Recently her blood count has fallen, and she is on iron again. For her, anemia is a real ongoing concern.

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    I think anemia is common when the Wegs hit your kidneys and lungs. Internal bleeding causes some of it and kidney damage affects the body's ability to make new red blood cells. I had significant anemia for several months and lots of blood transfusions to try keep RBC up to the minimum level needed to survive. Now years later my Hemoglobin is in the normal range.
    Knowledge is power! Wisdom is using it to make good decisions!

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    I certainly don't have low iron levels as I also have haemochromatosis. But, strangely, I'm also often anemic even though treatment for this is iron.
    Diagnosed April 1995

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    Are wegs supposed to eat iron if they have low iron levels? I think I remember hearing somewhere that infection uses iron in at least some vasculites, and then getting extra iron would just make the infection worse. Not at all sure about this though, but I'd probably ask a doc before starting to pop iron pills.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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    I'm just getting ready to start taking the iron pills again... They make my so sick and can't go to the bathroom right.

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    I just got back from a doctor appointment... Grr not the results I wanted to hear. My iron is very low like almost not there. He said that I should be able 100 and it's at 4. I have been very tired and lots of headaches. Well now I know why. Plus my hemoglobin is dropping again.
    Just wish I could get into remission!

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    I have to take iron pills also, don't like the way they treat my stomach. They are suppose to help my RBC.

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    My ferratin levels are always low, which i'm meant to be on iron for. No known reason for it.

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    Yeah that is what is really low for me too. But last time they got this low my hemoglobin dropped really fast and I had to have a blood transfusion. You need the iron to help make new blood cells so if they are low then they cannot. But the pills make me so very sick!! So I'm not sure if they will work or not. Last year I was on 975 mg every day and it did nothing to my iron levels

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