Vitamin and Mineral Supplementation in Thalassemia

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Offline Andy Battaglia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #30 on: May 31, 2008, 07:17:38 PM »
Hi Sharmin,

Kindervital  is a nice supplement. I particularly like that is is from natural sources which means its absorption will be enhanced and that the vitamins and minerals are in forms the body can actually use. The vitamin C content is low so there will be no worries about too much. It is also suitable for vegetarians which is a plus for many people. I think this is a good all purpose supplement that you can safely take along with other supplements.
Andy

All we are saying is give thals a chance.

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Offline Manal

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #31 on: May 31, 2008, 09:52:16 PM »
Andy, as we all know Vitamin E is fatty soluble vitamin that is stored in the liver when it is excess in the body as the body can not get rid of it and therefore harming the liver. Since we are giving our children high doses of vitamin E ( my son takes Vitamin E 400 alternating days in addition to the vitamin E found in the Yummi bears ) since thal are usually having defiency in Vitamin E. So does measuring its range in blood is enough to be in the safe side?? How many times in the year??

manal

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Offline Andy Battaglia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #32 on: May 31, 2008, 09:56:29 PM »
Testing vitamin E should be done annually. The amounts your son is taking is no danger. Thalassemia depletes vitamin  and folic acid to such a degree, that high doses are necessary to counter this. These stresses on the body are ongoing and require constant replacement. This goes for natural vitamin E only. Synthetic can be of some danger in high doses.
Andy

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Offline Sharmin

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #33 on: June 04, 2008, 03:27:21 AM »
Andy,

Do you know of any supplements beneficial in autoimmune disorders?

Thanks,

Sharmin
Sharmin

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Offline Andy Battaglia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #34 on: June 05, 2008, 03:14:17 AM »
Sharmin,

With autoimmune disorders, the goal is to suppress the immune system, so it isn't advised to take substances that stimulate the immune system. There isn't a lot known about why the immune system turns on cells in its own body. Suppression of the immune system is done with drugs like prednisone, splenectomy and even drugs used to suppress the immune system during cancer treatments. Once area currently under study involves glucosamine and similar compounds because they do seem to have some immunosuppressive properties. http://www.physorg.com/news98368825.html
 There is also a short list of herbs and supplements used to combat autoimmune disorders at http://www.umm.edu/altmed/articles/autoimmune-conditions-002386.htm

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Herbs and Supplements for autoimmune conditions

Beta-Carotene
Dehydroepiandrosterone (DHEA)
Eicosapentaenoic Acid (EPA)
Gotu Kola
Lipase

I have also seen mention of alpha lipoic acid, vitamin D and Pycnogenol. Pycnogenol® is the patented trade name for a water extract of the bark of the French maritime pine (Pinus pinaster ssp. atlantica), which is grown in coastal southwest France.

I would suggest talking to your doctor or perhaps Dr Vichinsky about the value of this approach. Because of the nature of autoimmune disorders, care must be taken to not overstimulate the immune system. Everything I've read says to consult with your doctor before trying a supplement approach. Part of this is due to lack of research and part because certain supplements can stimulate the immune system and make the autoimmune reaction worse.
Andy

All we are saying is give thals a chance.

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Offline Sharmin

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #35 on: June 05, 2008, 04:10:31 AM »
Thanks Andy,

This information is very helpful.  It seems that regulating the immune system is very tricky - getting it to do what it should but not what it shouldn't do.  I guess what we can hope for is - as our doctor says the antibody to burn out - either on its own or with treatment. 

The other method, according to our doctor, that could resolve, would be a transplant - because everything is wiped out and repopulated in the process.  I know that the marrow is ablated for gene therapy as well - but god only knows when that will be available.  I hope things work themselves out for us in the meantime. 

I will discuss all of this further with dr. vichinsky,

Sharmin
Sharmin

Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #36 on: October 21, 2008, 06:37:26 PM »
Hi Andy,

I have beta thal minor.  I have been taking 500mg of Vit C for almost a year for my allergy and easy to get a cold.  I have joint pains and I have been changing different mattress pads or mattress and it still doesn't help.  Is it because I have overdosed 500mg C daily?  Lately, I have been trying B complex and found out my asthmatic symptoms is gone.  But B complex also hurts my stomach and intestine in the first hour.  I change to B complex with yeast free.  The pain is less but not completely.  B complex calms and relaxes me.
I was taking daily on multivitamin with 800 folic acid, Vit C 500, calcium 600 + D 400, omega-3 1200, and whenever needed on B complex 60.  I just cut Vit. C.  Can you see what else I need to cut for beta thal minor and what to add as well?  Many thanks!

Teresa

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Offline Sharmin

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #37 on: October 21, 2008, 07:01:49 PM »
Dear Teresa :hithere ,

Welcome to our site, please see the following post regarding thalassemia trait and supplementation.  It is our latest discussion on vitamins. 

http://www.thalassemiapatientsandfriends.com/index.php?topic=2164.0

A couple of vitamins brands are listed as good supplements for thal minor, also Andy has suggested a few others to take alongside the mutli.  Please avoid iron when taking vitamins as thalassemics are prone to iron overload to their tendency to have increased iron absorption. 

Best of luck and please feel free to post any other concerns you may have,

Sharmin
Sharmin

Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #38 on: October 22, 2008, 09:54:29 PM »
Hi Sharmin,

Thank you for the useful source!  I cannot find the Swiss Natural Sources Time Released.  For the Swiss Total One Antioxidant, the only thing I'm concern is the word  'anti-aging'.  Will it be too much for a 42 years old woman?  Thanks in advance!

Teresa.

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Offline Sharmin

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #39 on: October 22, 2008, 10:12:49 PM »
Hi Teresa,

I am glad that you found the thread helpful.  That is a good question, the name of this multi vitamin has recently been changed from 'anti-aging' to 'antioxidant' probably to avoid this confusion.  It is important to focus on are the ingredients of the vitamin - and we find the ingredients of this vitamin to be quite good for adult thal minors.

This particular vitamin contains alpha lipoic acid, lutein, zeaxanthin, lycopene, green tea, grape seed and omega-3 and some other important supplements along with the vitamins and minerals which most multi vitamins contain.  Also, it is free of artificial preservatives, colour, wheat or yeast.  I have used this vitamin personally and I feel great when using it.  I began taking it at the age of 32. 

The vitamin doses won't be too much for you. You may find that your urine is neon yellow after taking the supplement, this is from the extra vitamins that your body does not absorb so don't be concerned. 

If you begin using them, please post your experience with the product.  Also, Andy has posted some other supplements that thal minors should be taking along with a multi so be sure to view that as well. 

take care,

Sharmin
Sharmin

Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #40 on: October 22, 2008, 10:37:03 PM »
Hi Sharmin,

I just ordered the Swiss Total One Antioxidant.  Seems like there is only one website selling the vitamin.  I am living in California.  The shipping cost is a concern.  Is there anyway that I can find coupons or discounts?  Thanks in advance! 

Teresa.

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Offline Sharmin

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #41 on: October 22, 2008, 10:58:46 PM »
Teresa,

The vitamins are available at most drug stores and pharmacies as well.  Be sure to check.

Sharmin
Sharmin

Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #42 on: October 23, 2008, 11:00:44 PM »
Hi Sharmin,

i tried to call all the pharmacies or whole food stores but they don't carry the brand.  It might be very popular in Canada but not in U.S.  If you know where to get Swiss Herbal Antioxidant Total One in U.S., it'll be great.  Thanks in advance!

Teresa.

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Offline Sharmin

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #43 on: October 26, 2008, 05:50:18 PM »
Dear Teresa,

I will look into this for you.  Swiss vitamins are very readily available at pharmacies, grocery stores and health food stores in Canada so I just assumed that they would be in the US as well. 

Has anyone else seen these vitamins on the shelf in the US? 

Can you PM me and let me know which city & state you live in and I can try to find out for you?  You can also print out the list of ingredients to see if there is another brand that is similar in content to this one. 


Sharmin
Sharmin

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Offline Dori

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #44 on: October 26, 2008, 08:29:27 PM »
This post is an eye-opener.
Since 6 months I do only Vit D, but by myself I found magnesium pills as well to stop the hurting leg problem. Here I read you should take calcium (stomach can't stand those tablets), magnesium and zinc :o
I never heard of Vit E before. What products contains vit E?
Since year and years I take folic acid, but I forgot so many times to take it.
I really going to discuss these things with my doc.

 

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