Discussions By Condition: I cannot get a diagnosis.

Afraid im dying from anemia

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: Anonymous
  • January 29, 2008
  • 04:34 AM

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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2 Replies:

  • My iron stores were always low, too. So far I'm testing positive for Lyme and babesia. I'm thinking maybe it's my babesia since it lives inside the red blood cells. Join Lymenet and find an "LLMD" and a reliable lab. Quest missed mine multiple times. When to Suspect Lyme:http://www.angelfire.com/biz/romarkaraoke/whento.htmLyme Disease - A Hidden Epidemic:http://www.freewebs.com/teenswithlyme/index.htm Lymenet: http://flash.lymenet.org/ubb/ultimatebb.phpThank you for this information but i dont think tis could be the cause because the treatment is long courses of antibiotics that i have taken for other ilnesses so if it was lyme disease surely it would have been cured. Also lyme disease is extremely rare in ireland especially as i live in a city.
    Anonymous 42,789 Replies
    • January 30, 2008
    • 01:14 AM
    • 0
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  • Have they looked at severe protein depletion?
    rad-skw 1,605 Replies
    • January 30, 2008
    • 11:36 AM
    • 0
    Flag this Response
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