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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2019





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Author Topic: Different levels !!  (Read 4917 times)
Manal
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« on: June 19, 2007, 06:48:08 PM »

Hi,

Why in thal minor you may find variation in HB levels, i mean i know some one whose HB is 8.5 and has no iron defiency and another who is also a thal minor with no iron defiency and has a Hb of 13 and both are thal minor. Is this due to the difference in the nature of mutation?? and how can we raise the Hb in thal minor other than taking folic acid??

Thanks
Manal
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Andy Battaglia
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« Reply #1 on: June 19, 2007, 07:42:45 PM »

Hi Manal,

The amount and location of the mutation are both factors that affect how much hemoglobin is produced. In fact, this is the same reason some thals are major and some are intermedia, when both beta genes are mutated. Each of the two beta hemoglobin genes are responsible for producing equal amounts of hemoglobin. A person with a mild mutation might never even know they carried a thal gene, while someone with a thal beta zero gene might have significant symptoms or possibly be transfusion dependent. Unfortunately, there has been very little interest in researching minors and the variations found in the health of minors and its relationship to gene mutation. I think this information will be of more use with future treatments, where knowing the type of mutation each parent has will enable doctors to formulate a treatment program right from birth designed specifically for that combination of genes.

Any natural hemoglobin inducers such as wheatgrass (capsules or extract) or aloe, etc can be tried to raise your Hb. I am a great believer in maximizing the efficiency of the oxygen intake. Exercise, breathing deeply and vitamin E all can be of help in improving your oxygen efficiency. I have taken 400 IU of vitamin E daily for well over 30 years and feel that is very safe and very effective. Studies have also shown that almost all thal majors have severe deficiencies of vitamin E. I would postulate that minors would also show a deficiency to a lesser degree. The goal should not be just to show a higher Hb level, though. Many thals who use wheatgrass mention many positive effects including higher energy levels and less headaches and sickness, even though little or no improvement in Hb level takes place.
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Andy

All we are saying is give thals a chance.
Manal
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« Reply #2 on: June 19, 2007, 07:57:44 PM »

Thank you Andy for your clear reply as always

Manal
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Courtenay1826
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« Reply #3 on: June 20, 2007, 10:17:27 PM »

Manal -

I'm not sure I understand what you're trying to say - if both of the thal minors have iron deficiency, and their Hbs are different levels, whats the difference? Or is it about the iron deficiency?

My Hb usually hovers between 9 and 11, hematocrit around 33-37.  I am also iron deficient, I guess they call it malabsorption, so I take chelated iron supplements called Repliva, with vitamin C, E, and B12 for minors with iron deficiency.  Other than these supplements, I have to maintain a low-iron diet, just in case my need for transfusions becomes more dependent.

I have absolutely no idea what part of my gene is mutated, but there's more than one, but I'm not a major, or an intermedia, the second mutation is on another gene - does this make any sense?  Undecided
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Manal
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« Reply #4 on: June 21, 2007, 03:41:39 AM »

Thanks Courtenay for your reply.

I wrote in my post both with NO iron defiency, so i just wanted to know how can we raise the low HB provided that there is no iron defiency

Take care
Manal

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