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Thalassemia Patients and Friends and thalpal © A. Battaglia 2019





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Author Topic: 4 Year Old Beta Thal zero advice  (Read 3806 times)
Andy Battaglia
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« Reply #15 on: August 17, 2019, 02:08:57 PM »

There can be other genetic factors that moderate the effects of thalassemia, so one child may have a factor that helps, while another does not. One of the most common modifiers is carrying both alpha and beta thalassemia. One of our moderators has a beta zero major son. Both parents carry thalassemia. The mother is a typical beta minor with low Hb. The father also carries alpha minor, and his Hb is above 14 and he runs marathons. Both parents carry beta zero, but in the father, the presence of the alpha thal means that the two types of globin are produced in similar amounts, whereas, in beta zero alone, there is a large deficit of beta globin, creating an imbalance with the alpha globin and it is this imbalance that is responsible for many of the problems of thal minors.
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Andy

All we are saying is give thals a chance.
TKDgirl7
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« Reply #16 on: August 19, 2019, 10:46:24 PM »

That’s really interesting!  I’m not aware of any alpha thalassemia in our family, but I don’t think anyone has been tested either.  My guess is something from my husbands side must have benefited my older son.  Both the boys will go to the hematologist for follow up in a couple of weeks.  My daughter had her blood checked and was in normal range for a one year old, so I’m optimistic she does not have Thal.  We still have to figure out the iron for my middle son, I was reviewing my numbers and I run on the low end for ferritin as well, so I’m wondering if we just don’t absorb it well? 
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Andy Battaglia
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Will thal rule you or will you rule thal?


« Reply #17 on: August 21, 2019, 06:34:17 PM »

I have theorized that the reason thal minors often have low serum ferritin is because iron is kept in use by the constant overproduction of red blood cells. Since iron is recycled and not eliminated by the human body, the amount of iron present would still be the same, but it would not be concentrated in ferritin, but rather it will be found in the constant use and recycling. Doctors get alarmed about low ferritin, but the iron bound by ferritin is what your body is currently not using. I don't think in the context of thal minor that ferritin is a very useful measurement.
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Andy

All we are saying is give thals a chance.
TKDgirl7
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« Reply #18 on: August 23, 2019, 08:33:40 PM »

That’s an interesting theory. I know I really struggled with my iron during my pregnancies, but otherwise I think I do okay even though I’m on the lower side of normal.  I’ll be curious how my oldest’s numbers look, he eats meat unlike my younger son.  His platelets were slightly higher than normal too, which my younger son’s are not.  I will be relieved once all of this is sorted out.
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