How to soothe the symptoms

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How to soothe the symptoms
« on: March 14, 2007, 03:20:03 PM »
Hi ! I'm 19 years old and I'm from Bulgaria(a country just next to Greece and close to the MEditeranean) Recently I found that i have THALASSEMIA MINOR. I HAve a slight anemia and my hemoglobin level is 125. I have dark complexion but often  my skin receives yellow hue, whish is something I don't like very much... ALso sometimes I feel fatigue, which hinders my  fitness training... My question : IS THERE A WAY TO SoOTHE THE SYMPTOMS OF THALASEMIA(YELLOWNESS and  FATIGUE) by means of diet or medication.
Thanks in advence:)

EDIT:ALSO I have VITILIGO (depigmentation of random arens of the skin) and I recently read that it may be due to pernicious anemia (a low level of red blood cells caused by failure of the body to absorb vitamin B12).  In this forum I understood that Folic Acid(which is vitamin B12) is recommended to THal patients. Should I take B12 although my organism has difficulties in absorning it?


« Last Edit: March 14, 2007, 03:50:10 PM by moto_jojo »

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Offline Narendra

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Re: How to soothe the symptoms
« Reply #1 on: March 14, 2007, 03:26:24 PM »
Hi,

Welcome to the site.

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IS THERE A WAY TO SoOTHE THE SYMPTOMS OF THALASEMIA(YELLOWNESS and  FATIGUE) by means of diet or medication
Folic Acid is recommended for all Thal(Minor)s. Also, eating healthy is a way to go.

You might want to inform your siblings that they too might carry the Thal(Minor) gene as it is passed on from the parents to the kids(and sometimes the parents as well as the kids do NOT know they are Thalassemia(Minor)). Also, before you plan to marry you might want to get your partner screened for Thal(Minor) and if he too is a Thal(Minor), genetic counselling is recommended.

Re: How to soothe the symptoms
« Reply #2 on: March 14, 2007, 03:34:10 PM »
Thanks:) I know that if my partner is thal minor too, our children will most likely by Thal major...
However I didn't know that my brother could also by Thal minor, as he never complained about fatigue or low hemoglobin level. As my father is positively Thal is there a chance for my brother not to be?
 I would also like to know if FOLIC ACID has any side effects. WHat does if help for(Decresing fatigue?) :rolleyes

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Offline Narendra

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Re: How to soothe the symptoms
« Reply #3 on: March 14, 2007, 07:14:03 PM »
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I didn't know that my brother could also by Thal minor, as he never complained about fatigue or low hemoglobin level. As my father is positively Thal is there a chance for my brother not to be?

Yes, there is a chance your brother might be a Thal(Minor) too. If only 1 parent has Thal(Minor) (suppose your father) and the other does NOT(your mother), there is a 50% chance that each child might inherit the Thal(Minor) gene. So, it is possible that your brother might also inherit the Thal(Minor) gene like you did. But, again there is 50% chance that he might NOT have inherited it. Anyway, it is always a good idea to get tested if anyone in the family is a Thal(Minor) because many thal(minor)s do NOT know about their Thal status until they find out their child being a Thal.

Other members who know about Folic Acid, could you answer her question

Re: How to soothe the symptoms
« Reply #4 on: March 14, 2007, 11:31:02 PM »
Folic acid should be taken in the recommended daily dosage only or slightly more when you really feel bad. Top much will cause diarrhea and then you know you are taking too much.

Have you done any iron studies recently? Thal minor does not preclude iron deficiency and you can have both, but don't take supplements unless you do blood tests.

Another thing that helps is hydration and electrolytes. For some reason, thal minors dehydrate quicker and easier and you get used that and don't notice it. Your local pharmacy should have electrolyte packets you can dissolve in water.

Re: How to soothe the symptoms
« Reply #5 on: March 15, 2007, 12:13:59 AM »
I would like more information on dehydration and thal minor.  Does anyone know if there is any research in print for me to read?  My dtr, Jamine, drinks water constantly.  I realize that it may be a soothing thing for her or even another medical condition.  Please reply.
Thanks,
Angie

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Offline Andy Battaglia

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Re: How to soothe the symptoms
« Reply #6 on: March 15, 2007, 03:17:45 PM »
Hi Angie,

All anemias causes dehydration.

http://www.medicineonline.com/encyclopedia/A/Anemia

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Because dehydration accompanies anemia, you will want to make sure you are drinking plenty of fluids.

Cellular dehydration occurs in anemia and a corresponding drop in magnesium levels is observed. Dietary supplementation with magnesium has been shown to improve the anemia in beta thal mice and it is suspected that it can also have this effect in humans.

From http://bloodjournal.hematologylibrary.org/cgi/content/full/90/3/1283

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Relative cell dehydration is associated with the anemia of thalassemia...Dietary Mg (magnesium) supplementation improves the anemia of beta  thal mice. Dietary Mg supplementation improves the anemia (increased Hb, Table 5) and the erythrocyte phenotype (Fig 1) of beta  thal mice...the present study shows that Mg supplementation improves the anemia of beta thal mice. It also compensates for the abnormal erythrocyte K (potassium) loss by decreasing the activity of the K-Cl cotransport system. These results indicate that Mg supplementation should be tried as a possible new therapeutic strategy to improve anemia in human beta -thalassemia intermedia.

I would suggest that magnesium supplementation would help in all thals, minor through major. The need for taking magnesium along with calcium has long been established but the depletion of magnesium through cellular dehydration only raises the need for magnesium supplements. A good supplement is calcium to magnesium in a 2:1 ratio, along with vitamin D which is necessary for calcium absorption.

The exact causes of the cellular dehydration is not understood, but as Marientina mentioned, electrolyte solutions can help with the dehydration by replacing lost minerals. Further supplementation with magnesium is recommended.
Andy

All we are saying is give thals a chance.

Re: How to soothe the symptoms
« Reply #7 on: March 15, 2007, 05:16:57 PM »
Andy, thank you for all of your responses.  You have helped out a great deal.  I am taking my dtr. Jazmine to a pediatric hematologist in Dallas on March 20th.  I don't know if she does have thal. (her pediatrician diagnosed her), but I believe she probably does. 
Anyway, I just wanted to say THANK YOU for informing the public in such a professional and clear manor.  Keep up the good work.
Angie

Re: How to soothe the symptoms
« Reply #8 on: March 15, 2007, 11:31:33 PM »
As I am gulping down my calcium/magnesium tablets as I type, I wanted to note to others who read this who may head on for shopping for supplements that if you get 10 minutes of sunlight every day, you manufacture enough Vitamin D. Most supplements I see have calcium/magnesium but not always Vitamin D.

In Europe, I believe most pharmacies stock Polase brand (magnesium/potassium) electrolytes, and even better is Almora which is a more complete electrolyte water soluble powder. It will save your life if you live in hot weather or if you have stomach flu. I have been dehydrated many times in my life and I learned my lesson. In the US, Pedialyte is recommended for mild to moderate dehydration. Some supermarkets now also stock fresh coconut water (not milk) either as a fresh coconut or in a juice package or can. The fresh coconut tastes best and is natures natural electrolyte keeper, but the packaged stuff is acceptable too.

As with all supplements, don't overdo it. Too much calcium, magnesium, potassium and salt will do all kinds of bad and dangerous things to you: heart problems, blood pressure problems, bloating, diarrhea, etc. You should adjust accordingly. One glass per day with the daily dosage for a thalassemic is normal. An extra glass because you exercised or had diarrhea, or the weather is hot, is also acceptable. You replenish as you lose.

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Offline Andy Battaglia

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Re: How to soothe the symptoms
« Reply #9 on: March 15, 2007, 11:54:33 PM »
If you live in a northern climate you may not even see the sun for a month at a time, so getting adequate D is impossible from the sun. In addition, if your skin is darker you need more sunlight to produce the same amount of Vitamin D as a lighter skinned person. For myself, even with taking 1000 IU vitamin D every day during the winter, it is still not adequate to prevent seasonal affective disorder.
Recent research has also shown 1000 IU of D can prevent many cancers. Scientists are re-thinking earlier recommendations and advising higher levels of D than previously.



Andy

All we are saying is give thals a chance.

 

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