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Conditions and Diseases > Blood Disorders Forum > low ferritin level not responding
Have you just been diagnosed with anemia? Learn how doctors define anemia...plus more information on what causes anemia and who is at risk of developing anemia....
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Q: low ferritin level not responding
asked by: jeani on January 28th, 2008
New User
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
-pallor
-hair loss/thinning
-angular chelitis on both sides of my mouth
-extremely slow healing
-irregular heartbeat
-exhaustion
-depression
-cognitive impairment
-pica

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
-haemochromatosis
-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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Replies(7)
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k8e123
replied on September 16th, 2008
New User
Have you made any progress yet?
Jeani,

My heart goes out to you being so ill and having no answers. Were you ever able to find out the reason for your low ferritin or able to bring it back up at all?

k8e
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fratina
replied on October 2nd, 2008
New User
Hello Jeani,

I'm so sorry to hear all you're going through. It sounds as if your doctor has been thoroughly checking everything out, but the mystery continues, along with your misery.

I'm curious to know if you have lab test results for serum calcium, total iron binding capacity (TIBC), and iron saturation. Also, were your thyroid tests well within range, or low normal on some readings? Did anything happen in the past that caused blood loss, like a surgery or child birth or heavy periods?

How is your blood pressure? Body temperature?

I wish you well, and will keep you in my thoughts.

fratina
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joni777
replied on December 20th, 2008
New User
How are you doing?
I read your posting with a lot of empathy and interest. I have a similar situation and at a loss to know what is going on. My doctors attitude is positively unsettling. Have you found out anything to help you. Please let me know.
Joan
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barba
replied on December 26th, 2008
New User
genetic link
I was operated from plasmocytome on my spine.
During rehabilitation I had exactly the same problem.
Appaernently "soluble receptor for the ferritin" was abnormal. Things got better with iron supply (take it in the morning with some water and eat yougurt immediately to avoid the stomachache).
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rmcneiece
replied on March 18th, 2009
New User
low ferritin
I have the same problem. I have expierenced chronic anemia for the past 15 years or so. I've had countless blood transfusions, an iron infusion treatment in 2006, and 2 more blood transfusions since then. Each transfusion consists of 2-4 units, (usually 3). I take 325 mgs of ferrous sulfate 3 times a day for years now, and still may ferritin level from the most recent test was 3. After extensive testing, I showed no internal bleeding, and I had a total hysterectomy 22 years ago. So, what's wrong with me?
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texasrn
replied on April 4th, 2009
New User
low ferritin
I too had/have the same problem. I am having a hysterectomy next month and am taking SSS tonic 2-3 times a day. This brought my ferritin level from a 9 to 67. Just thought I would share with you all.....
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tryingtohelp
replied on May 1st, 2009
New User
ferritin
Did they test your stool for blood?
Mine was low also. I take supplements and eat dried apricots, nuts, seeds and pieces of meat as a snack.
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