Thread: Should I worry.
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Old Tue May 31, 2016, 09:56 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Lindsay,

I am dealing with low iron on and off now because of a pancreas issue. When my iron is low, I will get this odd feeling in my legs when I am trying to sleep. It is really hard to describe. It is an uncomfortable feeling, not quite pain, but definitely not pleasant! You could say it is tingly - like my legs are starting to fall asleep. I later learned that it was "Restless Leg Syndrome", which is a symptom of low iron. Taking an iron supplement makes it go away for me. So if your son is feeling the tingling when he is sleeping or trying to go to sleep, it may in fact be a sign that his iron is low. I don't get the feeling when I am awake and moving around, only when I am sleeping or trying to sleep.

If your son has any GI issues (constipation, diarrhea, abdominal pain, trouble gaining weight, etc.), it may be wise to consult a GI doctor, as Marlene alluded to. The hematologist will have little insight if it is a GI problem that is causing iron deficiency. (At least that has been my experience, as medicine is so specialized these days.)

Also, when having the ferritin test done, be sure that your son is not taking any iron, multivitamins, or Vitamin C (including juices) for 3 days before the test. This will affect the results.

I have observed that kids in the 3rd and 4th grade seem to like doctors, tests, casts, etc. So PaulS makes a good point that you want to appear that there is no problem, just in case there really isn't.

One more data point...I rarely have reticulocyte counts done. Normally, I just get a CBC and if my HGB is normal or close to it, there is no further investigation.
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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