Vitamin and Mineral Supplementation in Thalassemia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #180 on: February 10, 2015, 07:09:00 PM »
Andy, as per the study it is clear that to decrease the chance of getting stones, it is better to take calcium supplement along with meal preferably with lunch or dinner.
But, calcium citrate can't be taken with meal coz of its antacid nature.
On the other hand calcium carbonate is better to take with meal.
This means calcium carbonate is better than calcium citrate as calcium supplement or there is some other fact also..??

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Offline Andy Battaglia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #181 on: February 10, 2015, 07:26:55 PM »
Calcium citrate is more easily absorbed calcium than carbonate. All calcium is antacid. I would rate citrate higher than carbonate. These are instructions for taking it.

http://www.drugs.com/mtm/calcium-citrate.html
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How should I take calcium citrate?

Use exactly as directed on the label, or as prescribed by your doctor. Do not use in larger or smaller amounts or for longer than recommended.

Calcium citrate works best if you take it with food.

Take calcium citrate with a full glass of water.
Andy

All we are saying is give thals a chance.

Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #182 on: February 12, 2015, 08:14:26 PM »
Thanks Andy,
Thank you very much for guidance.

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Offline Nomad

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #183 on: February 12, 2015, 11:53:48 PM »
Andy, what kind of magnesium do you suggest ?
The one I use has calcium-maleate (Dimacal) and magnesium-maleate.
Plus ascorbyl-palmitate ( fat soluble vit. C)
One more question, about my tinnitus and hearing loss, what do you think about Ginko biloba for that?
Does it help? Should I take it?

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Offline Lokkhi maa

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #184 on: March 03, 2015, 08:13:15 AM »
Hi,

I am often asked what supplements should patients be taking. I would like to remind everyone that I am not a professional, but that over the past thirty years I have done much research into health and nutrition on my own and in recent years have and continue to research specifically what is recommended for thals.
 
These are basic recommendations for adults. Keep in mind that lower doses are most often recommended for children.
 
I have included links to some of our previous discussions about supplements.
 
Vitamin E  400 iu.  Natural source preferred. d-alpha tocopherol (not dl-alpha). If possible, use mixed tocopherols. (Vitamin E is a blood thinner, which is a good thing for most people. However, if you are taking a blood thinner such as warfarin or coumadin, tell your doctor you are taking vitamin E as your dosage of the blood thinning drug may need to be adjusted downward).
 
Folic Acid 1000-10,000 mcg (micrograms). 1000 = 1 mg This is recommended for all thal patients.
 
B-Complex. The B vitamins help protect the body against stress and are important for many basic functions. B vitamins are water soluble and do not last long in the body. It is important to replace them on a regular (daily) basis. Adequate amounts of vitamin B-12 are essential. B-12, as all B vitamins is water soluble and amounts ranging from 100-1500 mcg daily are advised.
 
Calcium  1000-1500 mg plus 500-1000 mg magnesium plus Vitamin D 1000-5000 iu ( all work together to maintain bone growth and heart function). Calcium taken alone is inadequate and can also lead to problems affecting the heart. It must be balanced with magnesium, as they work together in the heart beat, and an imbalance can lead to heart palpitations. Vitamin D is necessary for the absorption of calcium.

See   http://groups.msn.com/ThalassemiaPatientsandFriends/general.msnw?action=get_message&mview=1&ID_Message=967
 
http://groups.msn.com/ThalassemiaPatientsandFriends/locatethalcare.msnw?action=get_message&mview=0&ID_Message=1127&LastModified=4675469592205296093&all_topics=1
 
Zinc 15-50 mg
 
Vitamin C 100-250 mg taken with desferal (helps more iron to be excreted). Do Not take more than 250 mg daily if thal. Too much iron can be freed into the bloodstream where it can cause clumping in the heart, causing lowered heart function. Vitamin C has not been studied with other chelators so it's combination effect is not known. Do we have any members on kelfer or ferriprox who can tell us their own experience using Vitamin C?

IP6 (phytic acid) is a natural iron chelator and a member of the B family. IP6 is a powerful antioxidant, and patients using it have showed both some reduction in ferritin levels and also improvements in general health.
 
Iron should not be used by thallasemics as it can lead to iron overload.
 
A previous discussion of what group members use is at
http://groups.msn.com/ThalassemiaPatientsandFriends/locatethalcare.msnwaction=get_message&mview=0&ID_Message=872&LastModified=4675459014025746004&all_topics=1
 
Please feel free to share what supplements you are taking. There may be other things that you find essential.
In addition to basic supplements, many members are also using wheat grass in juice, pill or extract form and some are also using other nutritional supplements that do seem to give them more energy. I would like to encourage all members to share their experiences and tell us what has worked for them. This is so important. People need to know what they can do to better the quality of their lives.


Dear Andy,

My 15 months old baby have E Beta Thallassemia.She needs transfusion after every 49 days and then her hb level always 8.5 to 8.Is she major or intermedia?


Presently she is taking:
Folic acid 2.5 mg daily
B complex 5 ml daily
Zinc 5 ml daily
Vit E 200 iu (3 capsule in a week)
Another multi vitamin doctor has advised but after study this site many discussion I checked the multi vitamin elements and found there is containing Vit C 17 mg.So recently I have stop it.

Please advice is it ok for my baby...

Mridula
Lokkhi Maa

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Offline Andy Battaglia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #185 on: March 04, 2015, 03:03:36 PM »
The amount of vitamin C in the multivitamin is low and does not need to be avoided.
Andy

All we are saying is give thals a chance.

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Offline patel.1005

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #186 on: March 21, 2015, 06:33:14 PM »
Hi Andy,

I know you have said over and over that Folic acid should be taken by all thals, regardless of whether they are minor, intermediate, or major. Can you explain how the folic acid helps? I know that folic acid is an essential component in RBC production, but in cases of thal major where any RBC produced is going to have nonfunctional Hb, what is the point? I mean your just going to have more nonfunctional Hb floating around right? I had previously read about folic acid here and asked my doctor about it and have started taking it, however, he seemed to be of the opinion that it wouldn't really help (for the reason above), but it wouldn't really hurt either. I guess I'm just curious about how it helps. I read that thals should take it here on an few other places, but can't really find an answer to why. And on that same line of questioning folic acid is said to be beneficial in hemochromatosis. Can you explain how? If you've explained this in a different post or link, if you could just point me in the right direction, I'd be greatful.

Thanks!!!
Archana
Archana

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Offline Andy Battaglia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #187 on: March 21, 2015, 06:55:12 PM »
Archana,

It is advised because ineffective erythropoiesis causes folate deficiency. Unless your Hb is kept very high, >14, you will have ineffective erythropoiesis, which depletes many nutrients.

http://www.hindawi.com/journals/tswj/2013/394295/

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4.7.4. Masked Deficit of Folic Acid in Thalassemia

Folic acid deficiency has been reported in both thalassemia major and minor [122–124], as a consequence of increased folate use caused by increased erythropoiesis. It can lead to overestimation of RBC deficiency. Daily folate supplementation is currently advised for patients with hemoglobinopathy [124].
Andy

All we are saying is give thals a chance.

Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #188 on: April 22, 2015, 06:30:18 PM »
Andy , can you please comment on this link regarding my (thal beta minor) folic acid supplementation!

Folic acid supplements are thought to be taken by more than 230,000 pregnant UK women each year as it can help prevent spina bifida and other birth defects affecting the brain and spine.

But one study examined by Dr Byers’ team found too much increased the chances of getting cancer by 56% !!!

http://www.mirror.co.uk/news/technology-science/science/many-vitamins-can-give-you-5556383

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Offline Andy Battaglia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #189 on: April 23, 2015, 12:19:06 AM »
All I can say about these "studies" is that they are not studies. They pick and choose data from other studies and are able to show any results they want. They are agenda driven and the agenda has nothing to do with health and everything to do with convincing the population that trying to be healthy is a negative, because healthy people are bad for business. The so-called trial of vitamin E mentioned in the article was one of the biggest piece's of garbage I have ever seen. It was not a study or a trial, but rather picked studies of only people who had mortal illnesses and then tried to tie the death rate to vitamin E, even though everyone in the studies was already dying. The only thing proven by their stats was that very ill people are more likely to try various supplements to try to save themselves. Perhaps if they had followed a good health program all along, they may not have had mortal illnesses, but
once one is already dying, it's seldom that can be reversed. Most official trials of vitamin E have also used the synthetic form of E, which is an industrial by-product and will never be recommended by me. Since these articles don't actually show their meta analysis, I can't talk about specifics, but I have found very very few honest meta analyses being done. Keep in mind though, that folic acid is water soluble and does not stay in the body for long.


On top of that, thalassemics are not the general public and have a higher need for many nutrients due to depletion of these nutrients.

Personally, you will have to kill me to get me to stop using supplements. I've taken natural vitamin E for 40 years and B Complex containing folic acid for 30 years. I can barely function without vitamin D. The only health issues I have are a hereditary thyroid condition and asthma since birth and both are well controlled. Since I got my D level above low normal, I was even able to stop all my asthma meds. Since my D level has been in the normal range. I am seldom sick, having had only two mild colds in the past three years. My only health issues are physical problems mostly related to endless hours at the computer. I believe in using natural supplements and following a healthy diet because 40 years of doing so have been ample proof to me of their value.

I think these doctors would have much more useful lives if they would do some meta analyses on the dangerous and overpriced pharmaceuticals that they prescribe like candy which kill thousands of people every year.
Andy

All we are saying is give thals a chance.

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Offline Lokkhi maa

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #190 on: April 23, 2015, 02:56:07 AM »

Dear Andy,

What is the best natural source for Vitamin E..
Lokkhi Maa

Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #191 on: April 23, 2015, 06:34:47 AM »
Andy, thank you so much for this helping words!

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Offline jay

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #192 on: April 23, 2015, 10:57:20 AM »
ya world wide peoples are living longer than before life expectancy has gone up, health sector getting better diagnostic devices. normally cancer pops up later half of life so more the population live more will be the cases that means one can link anything to increased number of cancers. The devil is in the details.

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Offline jay

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #193 on: April 23, 2015, 11:17:25 AM »
lokkhi maa

http://ods.od.nih.gov/factsheets/VitaminE-HealthProfessional/

Wheat germ oil
Sunflower oil
Almonds
Safflower oil
Hazelnuts
Peanuts

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Offline Andy Battaglia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #194 on: April 23, 2015, 02:32:37 PM »
Jay,

You are absolutely right. Any analysis can be bent to try to show a correlation, but correlation does NOT equal causation. I would love to see an analysis of the harm that iron supplements do to people and how much higher cancer rates are among those who take iron long term. This is something we already know, iron feeds cancers. It also feeds bacteria and viruses, so why is iron prescribed like a cure all when most people should not be taking it? I'll answer. It is because industry has found very clever ways to dispose of waste products and adding iron to everything is one way. The same can be said about fluoride in water. It is industrial waste that has been foisted on the public as a cavity preventative. It makes no sense at all to use this poison this way, but not only has industry found they don't have to pay for disposal of this poison, but they have managed to turn it into a profitable venture. Any benefit that fluoride may have could easily be accomplished by an oral rinse. We certainly don't need to be feeding our bodies poison.
Andy

All we are saying is give thals a chance.

 

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