Vitamin C for Thal?

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Vitamin C for Thal?
« on: February 17, 2012, 06:51:07 PM »
Is there a criteria to following on how much Vitamin C Thal Major/Minor can take?

I've read post suggest it depends on your Hemoglobin level?

It would be nice to see a correlation between blood panel levels vs amount of
Vitamin C Thals can ingest.

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Offline Andy Battaglia

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Re: Vitamin C for Thal?
« Reply #1 on: February 18, 2012, 01:03:20 AM »
Thal majors are allowed only minimal levels of vitamin C daily, because C frees iron into the blood stream. Patients on desferal are told to take 200-250 mg C when they first start their desferal sessions, as this will create a more easily chelated free iron supply. However, at doses of 800 mg, some reduction in heart function was noted, so patients are told to limit their doses. I usually advise thal majors to get vitamin C through citrus snacks, so they're not taking high C foods with iron rich foods, to limit excess iron absorption from food. I think more research should be done in the area of vitamin C and chelators, to see if a higher dose of C could be handled with adjustments to the chelation. If this was possible, vitamin C could be used to speed up the rate of chelation by providing a supply of free iron. Since thal majors test almost universally deficient for C, it would be of great benefit if a way was found so thals could take more vitamin C.

Thal minors do not normally have to worry much about iron, so their vitamin C intake can be higher. Many minors have Hb levels in the normal range, so there should be no expectation of iron loading, as this is a reaction in the bone marrow to low Hb levels. If the Hb is normal or close to normal, there shouldn't be anything to worry about, but once it gets down to 10 or lower, bone marrow activity does increase and the gut absorbs more iron than needed in an attempt to raise the Hb. If Hb is typically below 10, there is more danger of iron loading. Minors in the 8-9 range would be most at risk for iron loading. Although C can cause more iron to be absorbed from food, the main thing to look at is how much iron is in the diet in general. That is far more relevant to iron load.
Andy

All we are saying is give thals a chance.

Re: Vitamin C for Thal?
« Reply #2 on: April 24, 2012, 02:37:22 PM »
Dear Andy,

I read some information relating to Vitamin C for Thal patients by Walter Last.  His therapy involves large doses of antioxidants (including Vitamin C) and a special diet to decrease Serum Ferretin levels.  Please check this out at:  www.healingyourself.com/Diseases/Hemachromatosis

The best I can gather is the bombardment of Vitamin C in combination of a low iron diet frees up stored iron and uses the antioxidants as chelators.

Let me know what you think of this 'treatment'.

Thank you,
Bill

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Offline Andy Battaglia

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Re: Vitamin C for Thal?
« Reply #3 on: April 24, 2012, 02:43:07 PM »
The link isn't taking me to an article.
Andy

All we are saying is give thals a chance.

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Offline Answers4N

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Re: Vitamin C for Thal?
« Reply #4 on: April 24, 2012, 06:19:10 PM »
Was this the article you were referencing Wildbill?

http://www.heal-yourself.com.au/Diseases/Hemachromatosis/NaturalTherapy-for-Hemachromatosis.html

I looked for it when the other link did not work. It would be an interesting connection, as vitamin C is recommended with iron supplements, because the vitamin C helps absorb (not block) iron in the body. Very interesting case. I don't know enough about the author to make up my own mind here, but it is interesting.

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Offline Andy Battaglia

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Re: Vitamin C for Thal?
« Reply #5 on: April 24, 2012, 11:50:44 PM »
Thanks for finding the article, Sarah. I had no time all day to look for it and it's a big help.

For me, as one whose logic is perhaps too dominant, vitamin C has always created the biggest paradox of all in relation to thalassemia. I have always had a hard time accepting what is believed about vitamin C and thalassemics, but because of the observed danger in a relatively low dose of 800 mg daily, I have always gone along with the advice to limit the daily dosage of vitamin C in thal major and intermedia. But I have also been in fact, the one person recommending vitamin C to thal minors because of the obvious need created by oxidation. Thal majors test almost universally for severe vitamin C deficiency, yet they are instructed to avoid this extremely important antioxidant. I have often alluded to the idea that vitamin C and its use in thal should be much more thoroughly studied. This article only reinforces that belief. I cannot advise large doses of vitamin C to thals, which I find distressing since I generally take 6 grams daily myself, but as long as we don't know for sure, I suggest caution.

Interestingly, the FDA recently banned large intravenous doses of vitamin C for cancer patients, in spite of much testimony to its efficacy in treating cancer. Vitamin C is extremely cheap and no one is going to make a lot of money from a vitamin C solution to any disease or disorder. Because of that glaring fact, I feel that it may be difficult to get research moving in that direction under our current research for profit paradigm.

One thing that was startling in that article was that a patient was told he was dying from iron overload in 1990, when desferal was available. Stay vigilant with your doctors and make sure you don't know more about thal than they do.
Andy

All we are saying is give thals a chance.

Re: Vitamin C for Thal?
« Reply #6 on: May 03, 2012, 07:28:30 PM »
Thank you to Andy and all those who commented.  I appreciate this site for the information and support it provides.  It is difficult to find understandable information on theThalassemia / Hemaochromatosis combination.

In speaking with my physician, I am his only patient with iron-loading thal.  I'm on Exjade, which has been lowering ferratin from 2500 down to 650 within the last year, but it really wears me out.

I have been taking B-12, green tea extract, folic acid, vitamin D, but still feel very drained.   Hemoglobin stays around 7.7 to 8.5.

Thanks for all you do.  It is much appreciated.
Bill

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Offline Answers4N

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Re: Vitamin C for Thal?
« Reply #7 on: May 03, 2012, 11:11:42 PM »
Hi Wildbill,

Do you know if it is the combination of Thalassemia minor and Hemaochromatosis that causes your hemoglobin to stay that low...? I thought that level was more closely related to intermedia.

I am curious because our son's hemoglobin is 8.3 with suspected Thal minor (at this point) and severe iron deficiency. Interestingly, I was just told recently that the Native American tribe that our son has heritage from has a very high incidence of sickle cell trait carriers. I tried to look that up and found that Native Americans do have a high rate compared with other ethnic heritages (with the exception of African Americans that had a higher rate), but I couldn't find a rate for his particular tribe. Now we are wondering if my husband might be a sickle cell trait carrier and that is combining with thal to create something with different effects.

I guess we wait patiently now for the genetic analysis....

Sarah :)

 

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