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  • Afraid im dying of anemia- Plz help

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    Old 01-29-2008, 05:36 PM   #1
    niaheany's Avatar
    Join Date: Jan 2008
    Location: Dublin, Ireland
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    niaheany HB User
    Afraid im dying of anemia- Plz help

    For the past 11 years i have ben sufering from worsoning symptoms of anemia. It started as tiredness and over the years has gotten steadily worse. Now my symptoms are....

    -severe fatigue
    -extreme breathlessness so severe that at times i pass out
    -bluish tinge to my lips
    -hair loss/thinning
    -angular chelitis on both sides of my mouth
    -extremely slow healing
    -irregular heartbeat
    -cognitive impairment

    It sounds like a normal case of anemia that has been untreated but im not anemic. The levels of iron in my blood and my red blood cells have been persistantly normal. My doctor has been taking blood every 2 months for the past few years trying to get to the bottom of this.

    She has ruled out.....

    -pernicious anemia
    -thyroid problems
    -various cancers
    -coeliac disease
    -internal bleeding
    -psychosomyic causes

    my blood test results are always the same.....
    I get normal results for-

    Hb (hemoglobin)
    RCC (red cell count)
    Hct (haematocrit)
    MCV (mean cell volume)
    MCHC (mean cell haemoglobin concentration)
    MCH (mean cell haemoglobin)
    RDW (Red blood cell distribution width)

    White cells/ lymphocytes normal

    Platelets normal

    B12 normal

    I am a healthy weight and have no other illnesses.

    The only test which comes back abnormal is my ferritin (iron stores) level.

    It is 4 and has been 4 in every test. It should be 12.

    I have tried various iron tablets but they made me sick. My doctor finally found one i could tolerate along withnan iron rich diet but after six months my ferritin was still 4.

    I have taken courses of iron injections and that has also failed to raise my ferritin. The doctor tried giving me higher doses and it didnt work. She theorised that the iron being injected was immediately taken up by my blood and not stored so i was taken into hospital and given iron overdoses and still no change.

    Basically i have a persistent iron store level of 4 despite all attempts at treatment. Even though my iron stores are low the iron in my blood is alwyas a healty level 13 but despite the fact that technically because of this i dont have anemia i have all the symptoms.

    None of my doctors know how to proceed. They tried a blood transfusion but since imnot actaully anemic it didnt make any diference. Im starting oxegen therapy soon due to passing out from breathlessness. I feel like im going to die if someone cant figure out whats going on.

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    Old 01-29-2008, 06:26 PM   #2
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    Join Date: May 2007
    Location: FL
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    Re: Afraid im dying of anemia- Plz help

    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

    Old 02-19-2008, 08:20 PM   #3
    pinkrosegarden's Avatar
    Join Date: Feb 2008
    Location: Albany,Oregon
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    Re: Afraid im dying of anemia- Plz help

    You might ask your doctor to check your copper levels. Copper deficiency can cause iron deficiency. If you do need copper, your iron levels will not go up till you raise your copper levels. Copper deficiency symptoms are similar to iron deficiency symptoms.

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