Can Supplements Help Everyone and Not Only Thals?

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Offline nice friend

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Re: Can Supplements Help Everyone and Not Only Thals?
« Reply #15 on: June 27, 2009, 12:03:20 PM »
i m sorry to hear this Zaini sis, may this Vit-D Deffiency prob will resolve soon , plz listen to wat your couisn hai said, i have been that treatment along time ago ( 3-4 yrs ago ) , and my grandma also have been treated with vit-d a couple of months ago .. soo dont worry it will settle very soon ...

Best Regards
Take Care
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

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Umair

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Offline Zaini

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Re: Can Supplements Help Everyone and Not Only Thals?
« Reply #16 on: June 27, 2009, 06:17:54 PM »
Thanks Eveyone,i had my first shot today,will take two more,hope it will solve the problem.

Zaini.
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Offline Andy Battaglia

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Re: Can Supplements Help Everyone and Not Only Thals?
« Reply #17 on: June 27, 2009, 06:57:26 PM »
Zaini,

I hope it gets your D up high enough, but if it takes more thn the three shots, don't be discouraged because it is common to have to continue the shots for awhile to get up to range. In my post from a couple years ago at
 http://www.thalassemiapatientsandfriends.com/index.php?topic=1184.msg9248#msg9248  you can read about vitamin D deficiency in the women of the UAE and how difficult it was to raise the levels up to normal.

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Only two of the women, one in each group, were not vitamin D deficient at study. All the women were randomly assigned to receive 2000 IU of vitamin D2 daily or 60,000 IU in one dose each month. The investigators note that vitamin D2 is the only high-dose calciferol available in the UAE.

Although both monthly and daily dosing significantly and safely increased vitamin D levels, only 21 of the 71 women (30 percent) who completed the 3-month study reached the recommended blood levels.

Vitamin D2 doses "as high as 2000 IU per day were marginally effective in ensuring adequate vitamin D status," Saadi commented. He and his colleagues suggest that "if the more potent vitamin D3 preparation is not available, higher doses of vitamin D2 than currently studied may be needed."

Even with high amounts of sun available, most people are not getting adequate sunshine for one reason or another, so efforts to get direct sun become very important. I'm not sure how this is possible for women who cover, but is there a way that is acceptable for Muslim women to get more exposure to the sun? Perhaps this is something for the clerics to discuss and find ways for women to get enough sun. Private parks for women only, perhaps, where women would not have to be fully covered?
Andy

All we are saying is give thals a chance.

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Offline Manal

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Re: Can Supplements Help Everyone and Not Only Thals?
« Reply #18 on: June 28, 2009, 12:55:45 AM »
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but is there a way that is acceptable for Muslim women to get more exposure to the sun? Perhaps this is something for the clerics to discuss and find ways for women to get enough sun. Private parks for women only, perhaps, where women would not have to be fully covered?


Andy

In my country here we have private beaches for women in addition to ''mixed'' beaches where women can swim, dance, play sports in open gym. But actually --in my opinion-- women in the middle east don't get enough sun for two reasons. First, we really have a high temperature and all people tend to avoid sitting in the sun on purpose to avoid the humidity and the hot weather and prefer to spend all time in air conditions.
If you have a look on any of the beaches here , you will find that only tourists (American or Europeans) are the one who are having sun tans andthe natives are hiding under umbrellas :rotfl

 Second, lack of knowledge to the importance of sun and how it is the natural source of vitamin D

manal

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Offline nice friend

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Re: Can Supplements Help Everyone and Not Only Thals?
« Reply #19 on: June 28, 2009, 02:44:17 AM »
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High Total Calcium - Hypercalcemia

Two of the more common causes of hypercalcemia are:


Hyperparathyroidism, an increase in parathyroid gland function: This condition is usually caused by a benign tumor of the parathyroid gland. This form of hypercalcemia is usually mild and can be present for many years before being noticed.

Some other causes of hypercalcemia include:


Hyperthyroidism
Sarcoidosis
Tuberculosis
Prolonged immobilization
Excess Vitamin D intake
Kidney transplant
Low Total Calcium – Hypocalcemia

The most common cause of low total calcium is:

Low blood protein levels, especially a low level of albumin. In this condition, only the bound calcium is low. Ionized calcium remains normal and calcium metabolism is being regulated appropriately.
Zaini Sis,
i want to say that, plz keep a good  eye on your vit-d level and test the level bfore each n evry shot and only go for another short if you need that , and try to keep monitoring that your vit-d level isn'ot gonna soo much high .. i m saying this bcoze high-vit-d levels could coze hypercalcemia too , and hypercalcemia is also not a good state of health ... soo plz sis, take good care of your health and keep a Hawk eye on vit-d levels .. here a few links with info  , plz visit links if want to read complete articles .. here it is ...

http://www.centralvamd.com/Vitamin_D.pdf
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Can you get too much Vitamin D?
[bgcolor=#ffffff]Yes! Symptoms include weakness, nausea, vomiting, joint pain, loss of appetite, weight loss. High levels of vitamin D can cause high levels of calcium in the blood (hypercalcemia) and calcium may form crystals in the kidneys (kidney stones), heart, or lungs.[/bgcolor]

http://www.labtestsonline.org/understanding/analytes/vitamin_d/test.html
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Is there anything else I should know?
[bgcolor=#ffffff]High levels of vitamin D and calcium can lead to the calcification and damage to organs, particularly the kidneys and blood vessels.
If magnesium levels are low, they can cause a low calcium level that is resistant to vitamin D and parathyroid hormone regulation. It may be necessary to supplement both magnesium and calcium to regain normal function.[/bgcolor]

http://www.cfs-recovery.org/vitamin_d_recovery.htm
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How Much is Safe?

The government says adults should take no more than 2,000 units per day and infants should take no more than 1,000 units per day.  Dr. Reinhold Vieth has written a study showing evidence that 10,000 units per day is safe for adults, but Dr. Vieth's views are controversial.  According to Dr. Vieth dangerous levels of calcium and vitamin D have been observed only in people taking more than 40,000 units per day for many months.

Excess vitamin D can cause high levels of calcium in the blood.  If you decide to exceed 2,000 units per day, see your doctor to have your blood vitamin D and calcium levels checked periodically.

though i quoted a info against high vit-D levels but i m not saying that dont take vit-D mega shots, infact me n my grandma have been through this treatment , all that i want to say plz keep checking your vit-D level and avoid taking any un-neccessory dose , dont go for completing course of 3 mega dose if u get desired results with one or 2 .... and check vit-D level bfore taking another dose .... May ALLAH (God ) Bless you with the best of health and a super healhty and joful life (AMEEN) ... ( hypercalcemia is also not a good state of health thats what i m worried about .... )


Best REgards
Take CAre
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

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Offline Andy Battaglia

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Re: Can Supplements Help Everyone and Not Only Thals?
« Reply #20 on: June 28, 2009, 03:45:16 AM »
I cannot agree that there is any chance that three vitamin D shots could possibly raise Zaini's level to a dangerous range. Her doctor knows the proper procedure and is following it. Zaini's vitamin D level is only 8, and is classified as "severe". It is very likely that she is going to need longer term therapy with vitamin D to correct this. Normal is in the 30-60 range. The low end of this range has been bumped up during the past year with the statement that it may be raised again, as more research confirms the body's true need for vitamin D. She has a long way to go just to get to normal, let alone a high level. In the study I quoted, only 21 out of 71 women reached the normal level after three months of vitamin D therapy. I have been fighting low D for 5 years with 1000 IU of D daily until October, 2008 when I started on 2000 IU daily, and my level is still only up to 19. As of the first week of June, I am now taking 3000 IU daily as advised by my doctor, with the understanding that the shots are next if I am not up to normal in six months. Even if Zaini's level can be brought up to normal, she may require an occasional shot of D to stay at that level. With low vitamin D levels, hypocalcemia is more likely and it would be a good idea to have the calcium level tested also. Low phosphorus levels are also consistent with low vitamin D, so for the health of the bones, getting the D level up is very important.

 There are many reasons people can find themselves low in D.

http://www.clinlabnavigator.com/Tests/VitaminD.html

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    *  Live in latitudes >35o from the equator
    * Live in heavily polluted cities
    * Belong to cultures that require clothing that covers their entire body
    * Are institutionalized or homebound
    * Have dark skin
    * Apply sunscreen compulsively
    * Are elderly (decreased skin synthesis)
    * Are obese (vitamin accumulates in fat)

By the way, sunlight through glass will not give you much vitamin D, so if one mainly gets sun through a window, it can be added as another factor contributing to deficiency.
Andy

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Offline nice friend

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Re: Can Supplements Help Everyone and Not Only Thals?
« Reply #21 on: June 28, 2009, 08:28:57 AM »
Thanks Andy for clearifying this all ,  :) :thankyou2

Best Regards
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

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Offline Bigg

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Re: Can Supplements Help Everyone and Not Only Thals?
« Reply #22 on: June 28, 2009, 09:32:51 AM »
Can you imagine we don't have this simple test here and the majority of all the vitamins except for vitamin B6 and B12 only. We have to send them either to Germany or France.

When i asked the lab technician, he just said, no doctor order these and therefore why should we buy their kits, especially that they will cost more if there is no mass demand on them.

The logic says that doctors should first investigate vitmain and mineral deficiency before diagnoising any symtpoms cause it could be nothing serious except vitamin deficiency :mad

manal

That's how it is - people have only deficiencies of B12 and D vitamins (it is strange that they even do B6 vitamin). These deficiencies are common, because vitamin B12 is not easily absorbed and vitamin D is also not easy to obtain by the body (as described here...). Other vitamins do not have to be tested, because they are water souluble, easy to excrete (you can't overdose these, as they are water soluble and easy to excrete) and accessible from food in large quatnities. So the common scenario for tratment is just prescribing multi vitamin B without any tests - the levels will normalize after such supplementation.
Almost the same applies to other vitamins (A, E) - they are readily accessible from food.
It would be nice to be able to test it all - not only vitamins - but this may be possible in 10-20 years, when there will be available whole panels of tests at price of today's one test. These are called lab on chip.

http://en.wikipedia.org/wiki/Lab-on-a-chip

B.

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Offline Zaini

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Re: Can Supplements Help Everyone and Not Only Thals?
« Reply #23 on: June 28, 2009, 09:55:16 AM »
Umair, Andy is right,i am on very severe deficient side,in m personal opinion it will take more then 3 shots to cover it,i'll ask the doctor again,she has also prescribed me " ONE-Alpha" or "Alfacalcidol" which is supposed to correct the deficiency,but it says only 0.5 mcg,i am not sure how much does it make in IU,but it seems like its not much ???

About sunlight,what Manal said is right,i have two balconies in my apartment,and each one of them is full of sunlight at one time of the day,like one has sunlight in morning the other in afternoon,but the problem is temperature and humidity,sun is so scorching here that its hard to sit out there,i'll try to try it in the morning :) .

Another thing is again as Manal said,people are not aware of how important it is to get Vitamin D,how important it is for bones and for fighting of cancers,as i told you guys earlier,my mother's level was 22,and personally i thought that she should be put on atleast 1000 IU daily,but the doctor said that osteocare is enough  ??? i don't think so,what do you say Andy?.

Zaini.
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Offline Dori

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Re: Can Supplements Help Everyone and Not Only Thals?
« Reply #24 on: June 28, 2009, 12:01:04 PM »


If you have a look on any of the beaches here , you will find that only tourists (American or Europeans) are the one who are having sun tans andthe natives are hiding under umbrellas :rotfl



They have the highest population with skin cancers risks. There are here huge campagnes to warn people, but it doesn't help at all.

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Offline Bigg

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Re: Can Supplements Help Everyone and Not Only Thals?
« Reply #25 on: June 28, 2009, 01:29:49 PM »
Hi Andy,

So I guess I found the post you were talking about on another thread...
Seemingly I have similar health problems as you have, and I did a lot of research in these areas. I hope that what I write will help you and will not worry you...

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I don't get enough exercise but I do exercise at least briefly daily. I'm overweight, although a very slow thyroid is a factor here.
There were articles claiming that when you are overweight, but otherwise your blood test are normal (ie. cholesterol level, triglycerydes and so on), and you are physically active, you are not at increased risk of any disease. In the article prepared specifically for my country (it was newsweek) as an example of such a person who is overweight (to tell the truth, he was really obese) but otherwise healthy was an actor known in my country. His blood was tested, he had doppler ultrasound examination of arteries, which were in very good shape. Wime verified these claims - after 3 years he was dead of heart attack - either these tests were not accurate or... who knows what...

Now scientists say that fat (especially in the belly for men) not only causes changes in metabolism (high cholesterol and triglycerydes) and blocked arteries, but also is a big excreting organ - it excretes many different hormones, one of them causing diabetes, other causing inflammation - don't remember exactly the names and mechanism - these are still being investigated.

So, what I am trying to say here, is that we can't forget to take care of excess weight. I am overweight too, and also due to "unavoidable conditions" (like your thyroid), and I am trying to lose weight, but it's not easy.

Fortunately I get enough exercise. Getting enough exercise when being overweight is the least you can do to increase your metabolism and keep your arteries clean (to keep long story short).

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As I said, I don't eat meat but I do eat tons of cheese. I try to eat as many whole unprocessed foods as possible. Whole grains are great. Even though I don't like a long list of vegetables, I do eat what I like and also try to eat fruits. I try not to eat a lot of junk food but do slip and eat some. Is this enough? I don't think so. So, what else?

I also prefer eaiting chesee than meat. But I am trying to cut on both. Every sandwich that I make is made of not only chese or meat, but also from lettuce, tomatoes, onions, garlic and so on. There is much more vegetables than cheese or food on the sandwich.
I am trying to have one meal completely vegetarian - for example rice-meals with marmalade or canned fruit.

The problem with meat and cheese is the same - they not only cause problems, because they are of animal origin (they contain animal protein directly causing disease, see for example beta-casein in milk, causing diabetes), but because they are contain hormones and antibiotics. Cows for example, when even not fed with hormones, have high levels of estrogen, bacause the farmers try to push performance to the limits. See for example:
http://www.tbkfitness.com/milk.html

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Do I feel supplements have played a key role in my health? Yes, yes and yes. My diet and exercise habits do not explain the state of my health by themselves.
Same here.
My list of preffered supplements contains:
- vit D
- IP-6
- cherries - this really improves condition of my muscles, great antioxidant, you might wanna try these if you have sore muscles
http://ezinearticles.com/?Cherry-Juice-Eases-Arthritis-Pain-and-Muscle-Soreness&id=2436319
- green tea - antioxidant
- resveratrol - not only because it may raise levels of fetal hemoglobin, but also because of that:
http://www.sciencedaily.com/releases/2008/07/080703120402.htm
http://www.sciencedaily.com/releases/2008/11/081126122203.htm
- L-carnitine - good for muscles, blood and promotes fat burning.
- blueberries, when these are available, my favourite fruit

So, this is my research in a very little nutshell. These all ways and supplements are easier to implement than one might think - I am kind of forgetful, so these have to be this way. They became my habit, and are not that hard to implement anymore. The point of this whole discussion is also showing that not only supplements are important, but also other factors, although without supplements it would be impossible to stay healthy these days.

Oh, and I'd forget - Andy, what was your initial level of vitamin D (and when the test was done), last level (and when the test was done), and dosage of vitamin D exactly?
I'd like to do a calculation similar to what I did for my own case (described in the other thread), to see if it checks out when you have the next blood test of vitamin D. Just a little research of my own, if you allow, Andy.

B.

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Offline Andy Battaglia

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Re: Can Supplements Help Everyone and Not Only Thals?
« Reply #26 on: June 28, 2009, 05:46:53 PM »
Bigg,

This was my first vitamin D test. From my symptoms over the years, I can tell it was much lower before I began using vitamin D. My winter depression has been upgraded to a feeling like I'm holding my breath all winter, waiting for it to end. This is actually a major improvement. When I doubled my dose in October, the muscle pain in my legs vanished in days. I knew I was on the right track but not there yet because I am still tired for no reason and feel like crawling back in bed in the morning. In contrast, when I get a lot of sun regularly, I don't even want to sleep and get by on about 5 hours a night. Vitamin D testing has only become in vogue in the past year or so, so very few people are going to have earlier results.

I eat meals with no animal products regularly but also do eat a lot of cheese (my sandwiches always contain lettuce...homegrown right now and tomato), and organic yogurt (no hormones in this at least). I also eats fruits in season. Right now it's strawberries. Soon will be cherry and blueberry season. I love them both. I also grow hot peppers which are also high in antioxidants and eat them regularly. I do need to work on my belly and with summer finally here, I am getting more exercise (at least when my sons cooperate and I don't have to cover their hours in the store like yesterday...ugh). I have also recently started L-carnitine and resveratrol, and thinking about finding a magnesium supplement.

I will be getting tested for vitamin D again in about 6 months. I am hoping for some progress.
Andy

All we are saying is give thals a chance.

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Offline Bigg

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Re: Can Supplements Help Everyone and Not Only Thals?
« Reply #27 on: June 28, 2009, 08:42:41 PM »
Hi Andy,

Because the data is limited, I have to make some assumptions in order to calculate your vitamin D parameters, so here it is:

How long was vitamin D taken: 8 months = ca. 240 days
(since half of October till half of June)

The dose: 2 000 iu/daily

Total dose: 384 000 iu
= 240 days * (2 000 iu/daily - 400 iu daily usage)

Increase in vitamin D level in blood: (A) 10- (B) 15 ng/ml
Comment: if your level is 19 ng/ml, it is very likely that it was initially (A) 9- (B) 4 ng/ml.
4 ng/ml is however less likely, because it is extremely low.

IUs needed to raise vitamin D level by 1 ng/ml:
(A): (384 000 iu / 10 ng/ml) = 38 400
(B): (384 000 iu / 15 ng/ml) = 25 600

This means that in order to raise your level to say 49 ng/ml, you need to take:
(A) (49 ng/ml - 19 ng/ml) * 38 400 = 1 152 000 iu
(B) (49 ng/ml - 19 ng/ml) * 25 600 =    768 000 iu

How many days you will have to supplement (at dose of 3000 iu):
(A) 1 152 000 iu / (3000 iu daily - 400 iu daily usage) = 443 days (ca 15 months)
(B)    768 000 iu / (3000 iu daily - 400 iu daily usage) = 295 days (ca 10 months)

This means you will have to deal with unpleasant effects of vitamin D deficiency for another year or longer... Even if we assume that these unpleasant effects start to subside at 30 ng/ml (and it seems very likely that they will although this may be not optimal level), this still means half a year of supplementation.
Maybe it's me, maybe I am impatient, but I wouldn't want to wait for so long. So...

How many days you will have to supplement (at dose of 10000 iu):
(A) 1 152 000 iu / (10 000 iu daily - 400 iu daily usage) = 120 days (ca 4 months)
(B)    768 000 iu / (10 000 iu daily - 400 iu daily usage) = 80 days (ca 2,5 months)
It is still kind of long, but to reach this 30 ng/ml level when symptoms subside it will take 1,5 months on average.
Why do doctors do not usually prescribe such a dose? Because they are afraid that the patient may get hypercalcemia (due to secondary hyperparathyroidism), but this fear is quite unwarranted:

http://www.vitamindcouncil.org/vitaminDToxicity.shtml
(green crosses on this page are references to relevant scientific research)

To be on the safe side, calcium level should be tested a few times during therapy, and the doctors do not want remember about that, so this results in lower doses prescribed.
And as it showed recently, magnesium can supress parathyroid hormone, and this allows for using the higher dose.
However I know for a fact that some doctors in the U.S. prescribe this high, or even higher doses.
The calculations above look quite complicated, but they are not.
I calculated quite similar values for myself, however I do not remember the exact number, I only remember that at dose of 10 000 iu (on average) it took me 6 months to get to 42 ng/ml.
These calculations always look similarly, as the absorbtion rates of vitamin D are similar and weight is also not that different among different people - so these calculations above apply to almost anybody ie. they show how very long you have to supplement vitamin D...
One exception to this would be people who get a lot of sunshine, but these people will not get vitamin D deficient in the first place -> if someone thinks that he/she gets a lot of sunshine, and has vitamin D deficiency, this means he/she does not get so much sunshine afterall, it only seems so.

Quote
and thinking about finding a magnesium supplement
I forgot to mention magnesium before. I am taking it and I am getting less grumpy as I write, but still...  :rotfl

One more thing about itching - have you checked your vitamin B12 status?
I had vitamin B12 deficiency too - effect of not eating too much meat, I suppose.

OK, that's all for now.

B.

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Offline Andy Battaglia

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Re: Can Supplements Help Everyone and Not Only Thals?
« Reply #28 on: June 28, 2009, 10:58:11 PM »
Bigg,

You did mention the one variable that I hope to take advantage of at least in theory (if it ever stops raining), sunshine. I do hope to get some help this summer from the sun.
Andy

All we are saying is give thals a chance.

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Offline Sharmin

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Re: Can Supplements Help Everyone and Not Only Thals?
« Reply #29 on: June 29, 2009, 01:04:44 AM »
This makes me think magnesium absorption is a very significant factor for thals in particular.  As warding off bone related illness and cardiology problems is essential in thalassemia - and the calcium:magnesium ratio plays a large role in both of these (as well as many other things) - that we need to get this right.  Taking cal:mag - 2:1 ratio does not mean you are actually getting cal:mag 2:1 ratio because magnesium is not readily absorbed - therefore one needs to take higher doses of magnesium to achieve the recommended amount.  We therefore need to determine magnesium intake based on absorption.  And this is essential to the health of thals (even non thals) - am I right in concluding this? 

Sharmin
Sharmin

 

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