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Author Topic: Hemoglobin F?  (Read 186 times)
TKDgirl7
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« on: September 24, 2019, 11:00:58 PM »

Does anyone know about hemoglobin F and thalassemia?  Both of my boys are now confirmed beta thal zero, they also have elevated hemoglobin F in addition to A2, which I know is typical for thal minor.  My older son also ended up iron deficient just like his brother. His ferritin S is 10.  I’m starting to worry there’s something inherited with that too because he’s a great eater and has meat daily.  After my younger son’s infusion his ferritin has held steady for a month and a half.  Any thoughts?
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Andy Battaglia
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« Reply #1 on: September 30, 2019, 06:54:24 PM »

Normally, HbF production starts to shut off at birth. In thals, small amounts are often still produced. This does add to the total Hb level, and in some thals, HbF production can beincreased by regularly using things like wheatgrass, folate and L-carnitine.
The ferritin is low. What is his Hb? What is the other boy's ferritin since the iron infusion?
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Andy

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TKDgirl7
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« Reply #2 on: September 30, 2019, 07:03:25 PM »

Hi Andy,
My son with the iron infusion is maintaining at ferritin S 57 two months later.  His hemoglobin is back to 10, he still is pale and fatigued.
My older son has a hemoglobin of 10.9 and a ferritin S of 10.  He was confirmed beta  thal minor zero like his brother, but seems to have good energy and eats very well.
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Andy Battaglia
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« Reply #3 on: September 30, 2019, 07:20:18 PM »

10.9 is not a bad Hb for a beta zero minor. If he was to try iron, it should be to see if a one time infusion raises his Hb substantially, at least 1/2 point. If he's healthy, I don't think it's a necessity. Far too many minors have low ferritin and are otherwise normal for their Hb level who don't need more iron, that it causes me to give ferritin levels less importance.
Does the younger son take any kind of vitamin supplement?
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Andy

All we are saying is give thals a chance.
TKDgirl7
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« Reply #4 on: September 30, 2019, 10:32:52 PM »

Thanks Andy,
Since our older one seems to have okay energy we are going to take a wait and see approach.

The younger one was taking Smarty Pants, but lately he has been saying they taste funny:(. He’s very particular about flavors and textures.  I’m open to suggestions.  We are meeting with a GI in November to see if there’s anything else going on. It’s odd that even though his iron looks good he’s still so pale and he always wants popsicles.  He sweats easily too and has trouble regulating temperature, but maybe that’s nutrition related.

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Andy Battaglia
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« Reply #5 on: October 01, 2019, 09:01:40 AM »

My kids always liked Yummi Bears vitamins. Might be worth a try.
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Andy

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TKDgirl7
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« Reply #6 on: October 02, 2019, 05:52:23 AM »

Thanks Andy!  I will give those a try!
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