Thalassemia Patients and Friends
Discussion Forums => Diet, Nutrition and Supplements => Topic started by: Andy Battaglia on March 10, 2006, 04:38:19 AM
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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 wheatgrass 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.
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Can someone explain why Vitamin E is important for a thal Intermedia?
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Vitamin E is one of the most important nutrients that need to be supplemented in thalassemia. The iron overload that exists in major and intermedia causes tremendous oxidative stress to the cells and anti-oxidants can prevent oxidative stress from occurring.
From http://www.cooleysanemia.org/sections.php?sec=188&node=188
Paradoxically, oxygen is essential for life but is also lethal! This is because normal oxygen molecules can convert into different chemical forms known as “free radicals.” When the activity of free radicals is harnessed and controlled, they have important uses in the body. Uncontrolled free radicals, however, can do great damage and lead to disease.
Antioxidants are important in any diet, because as their name suggests, they prevent oxidative damage in the body. In doing so, they play an important role in the prevention of diseases such as coronary heart disease and cancer.
In thalassemia, because of the excess iron in the body, there is a higher risk of oxidative damage...Vitamin E is the most important dietary antioxidant. Several studies have found that many thalassemics have lower levels of vitamin E in their blood compared to non-thalassemics. This could be either because thalassemics do not take as much vitamin E in their diet or because their needs are higher. In many studies, when vitamin E was given as a supplement, vitamin E levels in the blood improved.
And specifically about intermedia, from http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11378535&dopt=Abstract
Fifteen beta-thalassemia intermedia patients, not requiring chronic transfusional therapy, were monitored in order to check their antioxidant status, and the lipid oxidation products in plasma, LDL, and erythrocytes before and during a 9-month oral treatment with 600 mg/day vitamin E. The low level of vitamin E, and high level of malondialdehyde in plasma clearly tended to normalize after three months (P < .001), and were quite similar to control after six months. The abnormally low level of vitamin E in LDL and the four times higher than control basal level of conjugated dienes (LDL-CD), were not modified after three months of treatment. Significant changes of LDL-VE (P < .05) and of the basal LDL-CD (P < .001) were evident after six months. LDL-VE was within the normal range after nine months, whereas LDL-CD still appeared twice as higher than control. Plasma vitamin A, ascorbate, beta-carotene, and lycopene increased markedly at the end of the trial (P < .005). The level of vitamin E in red blood cells was normalized after six months of supplementation. A decrease of the baseline value of conjugated dienes was observed after nine months, although it remained 1.4-fold higher than control. The RBC count and hematocrit appeared higher at the end of the trial (P < .05 and P < .001, respectively). The hemoglobin value did not show variations. A shift to normal of the resistance of erythrocytes to osmotic lysis was observed. Our findings provide evidence that an oral treatment with vitamin E improves the antioxidant/oxidant balance in plasma, LDL particles, and red blood cells, and counteracts lipid peroxidation processes in beta-thalassemia intermedia patients.
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Osteoporosis is a serious problem in thalassemia that is becoming even more prevalent as the thal population ages. Since osteo is also a major problem in the non-thal population, there are many studies done on prevention and reversal of bone loss. Several studies were summarized by Jean Carper in her column in the USA Weekend magazine,April 2, 2006.
WHAT TO EAT FOR STRONG BONES
Bones weaken and fractures soar with age. Today, about 10 million Americans have osteoporosis (brittle bones), and another 34 million have osteopenia (low bone mass).
Potassium-packed fruit can help bones
Here's the latest research on how to keep bones strong:
Don't count on calcium alone. New research finds vitamin D as important. In fact, a daily 700 IU to 800 IU of D cuts hip fracture risk 26%, say Harvard investigators. Most women should take 500mg to 800mg calcium and 600 IU vitamin D each day.
Beware animal fat. Eating high amounts of saturated fat in meat and dairy can weaken bones, finds a new Penn State study. In men under age 50, those who ate the most saturated fat had 4% less bone mineral density than men who ate the least.
Eat fruits, vegetables. One reason: They're packed with potassium, which slows excretion of calcium. In animals, dried plums (prunes) even reversed bone loss.
Cut salt. In women with a typical American diet, cutting back to 2,000mg sodium a day reduced their calcium and bone loss, says a University of Tennessee study.
Get B vitamins. Low B12 levels in the blood signal lower bone mineral density in men's hips and women's spines, says recent Tufts University research. In Japanese research, high daily doses of B12 (1,500mcg) and folic acid (5mg) cut hip fractures 80% in stroke patients.
Limit colas and candy. Higher consumption of these is linked to greater bone loss.
Sources for this article
Vitamin D and bones Steingrimsdottir L, JAMA. 2005 294:2336-41.
Bischoff-Ferrari HA, JAMA. 2005 May 11;293(18):2257-64.
Saturated fat and bones
Corwin RL, J Nutr. 2006 Jan;136(1):159-65.
Fruits and vegetables and bones
Macdonald HM, Am J Clin Nutr. 2005 Apr;81(4):923-33.
Deyhim F, Menopause. 2005 Nov-Dec; 12(6): 755-62.
Salt and bones
Carbone LD, J Bone Miner Metab. 2005;23(6):506-13.
B vitamins and bones
Tucker KL, J Bone Miner Res. 2005 Jan;20(1):152-8.
Sato Y, JAMA. 2005 Mar 2;293(9):1082-8.
Colas, candy and bones
Tucker, KL. Curr Pharm Des. 2003;9(32):2687-704.
Jean Carper's Stop Aging Now! Copyright 2001-2006. All rights reserved.
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Andy,
Great article and I am sure it is very helpful for those looking for keeping their health in a better shape.
Could you be specific and tell what is recommended for Thal(Minor)'s?
-Narendra
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Narendra.... I think Folic acid would be great.... and ofcourse calcium supplements...
shikha Mitra
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Hi
I have been recommended squalene (shark liver oil?) as an anti-oxidant. I was told that it would assist Thal patients as we were prone to cancers.
Anyone knows about this? ???
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More about Vitamin D.
From Jean Carper's column, http://www.jeancarper.com/eatsmart/1724
Don't be vitamin D-ficient
A new Harvard study finds that men who had the highest blood levels of vitamin D were 29% less apt to die from any cancer than those who had the least blood D.
The vitamin appeared to be particularly effective in preventing deaths from colon, pancreatic, esophageal and stomach cancers. According to one measure, an extra 1,500 IU of a vitamin D supplement may cut such cancer deaths by 45%.
New German research suggests that vitamin D may be a new anti-inflammatory agent for treating congestive heart failure. A daily dose of 2,000 IU vitamin D strongly reduced signs of inflammation, which is involved in heart failure.
Such high doses of D generally aren't recommended but are safe, researchers say. High-vitamin D foods include canned pink salmon (3 ounces have 530 IU).
Scientific sources
Vitamin D vs. cancer
Giovannucci E. J Natl Cancer Inst. 2006 Apr 5;98(7): 451-9
Vitamin D vs. heart failure
Schleithoff, Stefanie. Am J Clin Nutr. 2006 Apr; 83(4):754-9
Calcium is a common supplement for thals and should be taken along with magnesium and Vitamin D. Vitamin D is required for proper absorption of calcium and magnesium along with calcium help regulate the heart beat. Calcium without magnesium can lead to heart palpitations. This new study shows that Vitamin D may also aid in treating congestive heart failure. One more reason to make sure you are getting your D.
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If you are looking for nutritional content of different foods there is an excellent resource provided by the US Department of Agriculture at
http://www.nal.usda.gov/fnic/foodcomp/search/
You can find information on vitamin and mineral content of foods prepared in a variety of ways. It is a very useful resource.
Another note I want to make is that there is a difference between the absorption rates of heme and non heme iron. This should be considered when making calculations about how much iron is in your diet. Vegetable source iron is less well absorbed in the gut and absorption can also be somewhat prevented by using certain foods, such as tea, with meals.
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If you are looking for nutritional content of different foods there is an excellent resource provided by the US Department of Agriculture at
http://www.nal.usda.gov/fnic/foodcomp/search/
This is IT! :yahoo :jumping
I've been looking for such database but always found very limited ones.
Thanks Andy!
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Hi,
Is it an established fact that thal is linked to cancer propensity? Now this is really scary!!! God, as if our glasses are not yet full! Please someone tell me more about this. I am really scared :wah
Scared,
Namitha
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What?!?!?
Thal. - A cancer!!!
I don't think so because the definition of Cancer is : "malignant growth or tumor caused by abnormal and uncontrolled cell division; it may spread to other parts of the body through the lymphatic system or the blood stream"
O.K the last two words can cause confusion, but I think that we don't have such cells that are so poisonous that they are lethal. Transfusions suppresses the manufacture of the faulty cells of our Bone marrow and everything is set as long as we provide alternate "Working ones".
Take care, Peace!
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Hi,
Is it an established fact that thal is linked to cancer propensity? Now this is really scary!!! God, as if our glasses are not yet full! Please someone tell me more about this. I am really scared :wah
Scared,
Namitha
Hmm... not sure if this is true but this is my take on this claim.
Being a thal means there's lots of free iron (non transferrin bound iron which is unstable) in the body (its a whole long technical explanation on this). This iron goes through a process which produces free radicals. Free radicals harms the body and are cancer causing. Therefore, Vitamin A, C and E which are anti oxidants are important for the body for any other person, what more for thals.
This is also the reason why chelation is so important. It removes the excess iron and the free radicals.
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The importance of magnesium supplementation in thalassemia should not be overlooked. Many thals take large doses of calcium but don't give a thought to magnesium, which the body needs along with calcium for many reasons, including controlling the heartbeat. It has also been found that cellular dehydration that takes place in thalassemics, can be countered by a high magnesium diet and that magnesium has a positive effect on anemia.
http://bloodjournal.hematologylibrary.org/cgi/content/full/90/3/1283
...beta thal mice that were fed the low-Mg diet became more anemic, had reduced serum and erythrocyte Mg, and had decreased erythrocyte K. Their K-Cl cotransport increased, followed by commensurate cell dehydration...high-Mg group showed a significant improvement of the anemia, increased serum and erythrocyte Mg, increased erythrocyte Mg, increased erythrocyte K, reduced K-Cl cotransport, and diminished cell dehydration...These results indicate that dietary Mg supplementation corrects hypomagnesemia and improves anemia in murine beta thal and should be assessed in human beta -thalassemia.
The ratio of calcium to magnesium and why it is important is discussed at
http://www.enerex.ca/articles/calcium_to_magnesium_ratio.htm
Lisa's doctor put her on a combination of calcium and magnesium because she was having heart palpitations. These two minerals control and regulate the heart beat.
REGULATION OF HEART BEAT
The heart is a muscle and its primary function is to pump blood throughout the body. The heart is composed of billions of cells, each of which works as an electrochemical generator, and contains both calcium and magnesium. On the outer surface of the heart cells, thin fibers made of a substance called "actin", continually expand and contract in unison with the heartbeat. The actin fibers are stimulated by calcium, and then relaxed by magnesium. An electrical charge produced by magnesium then pushes the calcium to the opposite side of the cell. Thus, calcium helps to produce the heartbeat, and magnesium regulates it.
The suggested ratio of calcium to magnesium has been put at 2:1 but this article suggests that since magnesium is not efficiently absorbed, that a higher ratio of magnesium may be necessary.
The recommended dietary allowance (RDA) for calcium is 800 mg/day, whereas for magnesium it is 400 to 450 mg/day. Only about one-third of magnesium is absorbed from dietary sources. Therefore, a daily magnesium intake of 1200 mg/day has been recommended by some researchers (22). The traditional ratio of approximately 2 parts calcium to 1 part magnesium needs to be upgraded to increase magnesium intake in view of the overwhelming beneficial role of magnesium. The ideal ratio for most people's needs is an equal ratio of calcium and magnesium.
The absorption and metabolism of calcium and magnesium is one of mutual dependence, and therefore, the balance between these two minerals is especially important. If calcium consumption is high, magnesium intake needs to be high also.
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Andy,
I want to talk about zainab's supplementation in a bit detail,currently i am giving her ABOCAL half tablet daily, by "ABBOT LABORATORIES" .A full tablet contains calcium carbonate 670 mg,equivalent to 268 mg of elemental calcium, Vitamin D 400 I.U, Vitamin C 500 mg, Vitamin B6 10 mg . I am giving her half tablet daily (prescribed by her hemo),so all values would be divided in half.And she is taking another multi vitamin called VIDAYLIN ,again by ABBOT LABORATORIES, It says that each 5 ml teaspoonful contains Vitamin A U.S.P 0.9 mg (3000 units) ,Vitamin D U.S.P 10 mcg (400 units), Vitamin B1 U.S.P 1.5 mg, Vitamin B2 U.S.P 1.2 mg, Vitamin B6 U.S.P 1.0 mg, Vitamin B12 U.S.P 3.0 mcg, Vitamin C U.S.P 50 mg, Nicotinamide U.S.P 10 mg.
I know it's a lot of details and i am sorry to bother you with this, but doctors don't want to go in that much details,and i don't want any point to be left,and also that i am worried about her magnesium and zinc supplementation,there is another version of VIDAYLIN called VIDAYLIN-M which contains all the minerals like magnesium and zinc but it also contains iron,so obviously it's not suitable for her,when i asked my physician to name me any supplement with magnesium and zinc but not iron, she asked me to force zainab to eat green vegetables,but zainab really doesn't like vege,what should i do? and though she is taking calcium but since she started IP6 she is complaining of pain in heels (below ankles) on daily basis, is this due to the calcium chelated by IP6? or anything else?
She went for transfusion today and her pre-transfusion hb was 9.8 after four weeks of last transfusion,and the thing that's bothering me is that her S.F increased,in july it was 1327,and in sept it's 1750, she is taking ferriprox and IP6,though last month we had to cut desferal due to unavailability.
Waitning for your reply.
ZAINI.
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Hi Zaini,
At JSF they always give Zinc Sulphate syrup to the patients on Ferrinill. See if that helps. Also you might want to try that Fizzy Calcium + Vitamin C soluble tablets. Kids love it. (I know I did when I was a kid :) ) Sorry I don't know the brand names but your chemist will help you out on that.
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Hi Zaini,
I want to really stress this point, as at times I assume everyone knows this. Thals should NOT take vitamin C supplements, except when taking desferal and only 100-250 mg taken along with the start of the desferal. Vitamin C aids in the absorption of iron from food and should be avoided by anyone with iron overload. Citrus should only be eaten between meals so that the vitamin C in it does not increase the absorption of iron from the diet. 500 mg is far more than a thal should get daily.
I don't know if you'll find any multi vitamin that does not have vitamin C in it. I know recently we had some discussion about a specific children's brand that had only a small amount of C in it. One brand is called Yummi Bears. It has 30 mg of C and no iron. Try to find something like this for a good variety of vitamins with some minerals. You can see the label at
http://www.yummibears.com/modules.php?op=modload&name=Sections&file=index&req=viewarticle&artid=1&page=1
An example of an easy to take liquid calcium supplement can be seen at
http://www.iherb.com/productdetails.aspx?c=1&pid=7657
It has the basics; calcium, magnesium and vitamin D.
I am not promoting any specific supplements but am only giving examples of appropriate supplements for thals. Safe and effective products that are appropriate for thals are on the market but sometimes you have to hunt around a bit.
The pain below the ankles is not related to IP6. Very little mineral chelation takes place with IP6. The body uses it where needed and it has been found that IP6 works to inhibit the action of iron that damages cells and also promotes cancer cell growth. There is much interest in IP6 as a potential weapon against cancer. Unfortunately there is something else that is well known for causing joint pain in patients. Ferriprox (L1, Kelfer, deferiprone etc.) is well known for causing joint pain in some thals. This is usually tolerated and the patients continue using the drug. Some patients find using a reduced dose of ferriprox and also using desferal 2-3 times a week keeps their ferritin in check. If you can resume getting desferal it is highly recommended that you use it. The desferal/L1 combination is considered to be the most effective chelation method.
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Hi Sajid,
I'll search for that zinc sulphate syrup in the market,and ABOCAL is the same fizzy calcium+vitamin c+d+b6 water soluble tablet you are talking about,but now i am worried that it's supplying about 250 mg of vitamin c,( zainab is taking half tablet daily) and as Andy very rightly said that thals should not be taking that much vitamin c ( ignorance on my part,MY GOD ,but sometimes it's hard to keep track of everything),so i think i'll be quitting it and go search for another calcium supplement with vitamin D.
Andy,thanx for such a detailed reply,we were able to find desferal atlast on very high rate, so i'll be resuming the therapy,i'll quit ABOCAL and search for another calcium supplement,but i think i'll continue VIDAYLIN,as it contains only 50 mg of vitamin C, I don't think yummy bears brand will be available here, i'll search for any alternative,thanx again for this "eye opening" reply :wink.
ZAINI.
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Let me remind everyone that if you are taking Deferiprone/Kelfer/L1 then you should consult your doctor for mineral supplements. Most common causes of joint pains in India have been due to mineral deficiency caused by taking L1.
All thals who took the supplements then did not report joint pains again.
Take care
Ash
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Hi Zaini,
I talked to one of our resident experts (Ashish) on the subject of L1 and he said if you want to know if it's the drug causing the pain, just have her stop taking it for 10-12 days and see if the pain clears up. If it does, please follow his advice and make sure that you are replacing the minerals lost in chelation, especially calcium, zinc and magnesium. If the pain does not clear, then it is most likely not chelation related. It may not even be thal related.
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Hi Zaini,
I noticed you are trying to determine what kind of vitamin is best for Zainab. We use Kindervital which is derived from natural sources and is iron free and source of Calcium and vitamin D. The contents have very minimum vitamin C only to aid in absorption of calcium and vitamin D. This product is specially designed with children in mind and geared towards better bone health and improved immune system. I am providing the link below for you.
http://www.florahealth.com/flora/home/canada/products/r4780.asp
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Thanx Andy ,
For your concern,i've noticed a weird thing though, when i read that post of yours about Vitamin C and came to know that i was overdosing it,i stopped Abocal right away,it's been two days i'd stopped it and in these last two days she hasn't complained of pain in her heels,i don't know if it's related because calcium and vitamin D are supposed to help bones,may be i am jumping to conclusions too early,but this is what i've noticed.I am in search of another calcium supplement with vitamin D.
Hi Canadian Family,
Thanx for the information,right now i am searching for any brand that is locally available,i am trying to reach my cousin who is a family medicine resident,but i think she is a bit busy right now,i hope i'll be able to catch her in a day or two.
Thanx Again,
ZAINI.
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As I mentioned in my last post, it is very possible the heel pain is not related to any of this. Might possibly be a minor injury that has healed now.
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Hi Andy
Hassan`s doc had prescribed mixavit. Since his dose was 2.5ml there was exactly 25mg of vit-c, it had more of B- vitamins. But she asked me to give it for a month and then stop for a month and continue henceforth. It is 10 days since I have stopped it and Hassan has not been eating well for the past week. I keep wondering if I should start giving him his multivitamins again or follow the doc`s order.
maha
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I have just received wheatgrass in the mail. I am eager to begin using it!
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Congratulations Sharmin, I did too and began using it on May 1st , 2008. Hope that our little angles will benefit from it
manal
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Hi zaini :
i m on ferriprox tablet and my doctor sugested these medicines:
Ferriprox 500 mg tab
Zincat 60ml dry suspension ( Elemental Zinc sulphate monohydrate U.S.P )........... 10 mg
D-Calc
i hope it will help u ........... best regards for Zaini oh yes its just an information for zinc suplement from me please dont forget to ask abt it to Zaini's Doctor
From
umair
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Thank you Andy.. this information is helpful. What are your thoughts of the B12 injections. I have read that most oral B12 supplements do not absorb well and we only retain small amounts of it. I have asked my physician about them and she wants to check my B12 levels first. Also, my serum ferritan level was at 7( normal being 40-60) and my physician wants to put me on iron therapy for a month and then recheck. Even though I am Thal. Minor she said I need it but she is aware that it can not be long term. What are your thoughts on that.
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Some people do need B-12 injections, if they suffer from pernicious anemia, in which the intestinal tract does not adequately absorb B-12. If you have this problem it will be discovered by the B-12 test. B-12 can also be found in sublingual tablets that one holds under the tongue until dissolved. The B-12 reaches the bloodstream through the veins under the tongue. This is a more efficient way to deliver the B-12 to the body than swallowing vitamin tabllets but not as efficient as the shots.
Thal minors can also have iron deficiency, just as anyone else can. If you are iron deficient it is coincidental to the thal and should be treated. A serum iron level of 7 is very low and should be addressed. Short term iron therapy may be all that is needed. If no improvement is made after one moth, a complete iron studies panel of tests should be run to confirm the iron deficiency.
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Andy I am considering Kindervital for my son - as per Canadian Family's post - and the link provided. I am also giving him vit e and folic acid and vit e, wheat grass and IP6. I am currently giving him cal mag which is probably geared toward adults - perhaps it would be best to switch him to the kindervital.
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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.
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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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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.
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Andy,
Do you know of any supplements beneficial in autoimmune disorders?
Thanks,
Sharmin
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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
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.
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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
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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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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
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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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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
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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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Teresa,
The vitamins are available at most drug stores and pharmacies as well. Be sure to check.
Sharmin
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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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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
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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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Hi,
I'm thal minor. It's true to me that I have low immune system. I can have cold after almost every menstrual cycle. I'm not taking multivitamin anymore after I read the site because the dose is not enough, and I'm waiting for the Swiss total One Antioxidant to be arrived.
I'm now taking B Complex 75 with 400mcg folic acid, 900mg calcium, 800mg Vit D, 400mg Magnesium, 400mg Vit E. I started to take these few days ago. Last night, I took a walk and the weather changed from very warm to a sudden fall to cold weather. My air tube is congested this morning. I was taking QVAR, preventative medicine for asthma. I also read their side effect which can lower my blood cells and cause general pain and I could feel it. I stopped taking it 2 days ago.
I can tell the vitamins that I'm taking has improved my depression. I'm seeing my therapist for PTSD symptoms and triggered me anxiety when I have stress which I now know that it can lower my blood cells too. I was a low birthweight preemie and I checked out website stating that will cause depression. I surely get more confused. With all the things that I have, should I increase the vitamins that I am taking for anxiety? I heard that KAVA extract can help anxiety. Does anybody try before? Please let me know.
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Hi Dore,
Although you are not thalassemic,but you are being transfused chronically,so when you use chelators,sometimes it also chelates other elements from your system which might be useful for your body,and as being exposed to foriegn blood allthe time,body is under tremendous pressure,so it's good to help your body with these multi vitamins and minerals that are essential for your body.
Vitamin E is a very useful anti oxidant,it helps eliminate free radicals in your body,helps your immune system.
From http://healthlink.mcw.edu/article/983211401.html
Some food sources of vitamin E
Vegetable oils, nuts, and green leafy vegetables are good dietary sources of vitamin E. Food manufacturers fortify many foods with vitamins and minerals. It is important to read the nutrition facts panel of the food label to determine whether a food provides vitamin E.
Wheat germ oil, 1 Tb: 26.2 IU ~ 90% of Daily Value (DV)
Almonds, dry roasted, 1 oz: 7.5 IU ~ 25% DV
Safflower oil, 1 Tb: 4.7 IU ~ 15% DV
Corn oil, 1 Tb: 2.9 IU ~ 10% DV
Turnip greens, frozen, boiled, 1/2 c: 2.4 IU ~ 8% DV
Mango, raw, 1 fruit: 2.3 IU ~ 8% DV
Peanuts, dry roasted, 1 oz: 2.1 IU ~ 8% DV
Broccoli,frozen, chopped, boiled, 1/2 c: 1.5 IU ~ 6% DV
Kiwi, 1 medium fruit: 0.85 IU ~ 2% DV
Spinach, frozen, boiled, 1/2 c: 0.85 IU ~ 2% DV
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Hi Dore,
Although you are not thalassemic,but you are being transfused chronically,so when you use chelators,sometimes it also chelates other elements from your system which might be useful for your body,and as being exposed to foriegn blood allthe time,body is under tremendous pressure,so it's good to help your body with these multi vitamins and minerals that are essential for your body.
Vitamin E is a very useful anti oxidant,it helps eliminate free radicals in your body,helps your immune system.
From http://healthlink.mcw.edu/article/983211401.html
Thank you for your help and information. I really never heard of this before. I'm glad to see that I do eat the right things:)
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Zain sis,
you are missing something , that is Olives and Olive oil , super source of Vitamin-E :thumbsup and anti-oxidant properties ... is not its great ... its Super aik dum Super ....
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Umair, i just want to make sure that you know that Olive oil should not be heated. It is just put on Salad or on food after it is cooked :wink
manal
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Hi Manal ,
but here doctors told us ( my family members ) to use olive oil for cooking , instead of other oils ..
in case of taking it with salad , i think it will harm liver ... please correct me if i m wrong...
Thanx
Take care
Umair
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Olive oil can be used raw or for cooking. I use it both ways. Why would it harm your liver?
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i think it will harm liver
Hi Andy ,
i hought that bcoze, doctors told to avoid food wich has high fats like cheeze and pizza like food in Hepatitus and bcoze it disturb's the live .. soo i thought taking Oil directly will also harm liver .. thats why i asked about the taking Olive oil directly ...
Take care
Umair
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Umair,
I depends on the type of fat that you consume. Certain fats are healthy for you and are in fact essential. These are fats that are rich in Omega 3. Small quantities of Olive oil can be healthy for you as are flax seed oil and fish oil.
Saturated fats are harmful to the liver and the cardiovascular system - such as butter, cream and animal fats. (Those that are solid at room temperature).
Sharmin
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When olive oil is overheated the unsaturated fats change and become harmful that is why it is advisible that after food is cooked it is added at the end or just before you finish cooking so as to avoid over heating. This means too that you never fry anything in olive oil and also in maize oil.
You can fry in sun flower oil
manal
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Hi Manal & Sharmin ,
Finaly decided to have Olive oil in Salad a few hours (3-4 ) after lunch .. it will be good na ???
i think it will be best way to intake olive oil ....
Umair
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Hello all,
I recently read on the forum that you can mix the IP6 powder from the capsule into juice and drink it. What a wonderful idea, Little Miss A. as picky eater as we all know, would not dare to touch the capsule but now we can give her IP6.
I just bought CF IP-6 & Inositol by Enzymatic Therapy, (Canada) and the formula is below:
Each Capsule contains
Calcium Magnesium Phytate 506 mg
(containing: 400mg Inositol Hexaphosphate (IP6), which contains 110mg Inositol from rice)
The bottle says two capsules daily, please provide your input to the dosage for Little Miss A.
Thanks....
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Canadian Family,
I am using the same formula. I aim to give him 2 capsules 2 or 3 times a day. It is difficult because it needs to be taken on an empty stomach. We have started giving him exjade at 4am so that when he wakes up he can have IP6 and then his calcium supplements 1 hour after that. I give him his second dose of IP6 when he gets home after school and his third dose (if possible) before he falls asleep at night. My son weighs 27 - 28kg.
Sharmin
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Umair, i just want to make sure that you know that Olive oil should not be heated. It is just put on Salad or on food after it is cooked manal
Hi Sis , in my last visit i was talkng to my Haemo about Anti-oxidants , she told me that i can take carrot mixed with olive oil as an anti-oxidant and it will be good , when my bro asked to her to cook my meals in olive oil , she told us the same you are saying in your post that i quoted above , she said dont heat olive oil, heating could change its effectiveness.... she said it better to give olive oil by mixing that in Salad or when you are going to give that in meals then dont heat that , you may put olive oil in Meal after completing the cooking procedure ( in last after turning off the burner/oven)......
It is difficult because it needs to be taken on an empty stomach. We have started giving him exjade at 4am so that when he wakes up he can have IP6 and then his calcium supplements 1 hour after that
Awe sis , same is happening to me here , i used to take medicine in nights then before break fast then empty stomach after main meal i have to take vitamins and then always have to wait for few hour to take ferriprox OMG , spending all the day and nights in planings when and which medicine i have to take when i have to take main meal and when to take tea time like short meals .. OMG pretty much confusing ..... I HOPE AND PRAY THAT LITTLE-A's ROUTINE WILL BCOME NORMAL VERY SOON AND HE WILL BE BLESSED WITH THE BEST OF THE HEALTH (AMEEN)
BEST REGARDS 4 BOTH OF YOU ( MANAL n SHARMIN ) AND YOUR FAMILIES , AHAN ZAINI SIS HOW CAN I FORGET YOU WHILE I M PRAYING , AND BHATTI BHAI I REMEMBER YOU & MUJTABA AS WELL IN MY PRAYERS .....
TAKE CAREz
Umair
(Note: i typed with capslock , but i dont mean that i want to shout , i just wanted to prominent the lines in which i praye's for you ) so please dont mind ..
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Thank you for your prayers Umair. All the better in capitals:) It means a lot to us that you are praying for us. I pray for you as well bro.
I have not heard that olive oil is not to be heated. It is common to cook in olive oil here ??? We cook all of our meals in olive oil, I hope that is okay :dunno
Sharmin
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Olive oil can be used in cooking.
http://www.oliveoilsource.com/cooking_olive_oil.htm
Olive oil is a great oil for cooking. Strong flavored olive oils can be used for frying fish or other strong flavored ingredients. A mellow late harvest Mission variety oil could be used in baking a cake. Olive oil has a high smoke point, 410 degrees F, and doesn't degrade as quickly as many other oils do with repeated high heating...
Olive Oil Myth: Olive oil loses its benefits when heated
The Facts: Excessively heating olive oil will evaporate the alcohols and esters which make up its delicate taste and fragrance. Heating olive oil will not change its health aspects, only the flavor. Use a cheaper olive oil which doesn't have much flavor to begin with if you want to fry with it, add a more flavorful olive oil after cooking or at the table.
Olive Oil Myth: Heating a cooking oil will make it saturated or a trans-fatty oil.
The Facts: As far as making a saturated fat, according to Dr. A. Kiritsakis, a world renowned oil chemist in Athens, (Book - OLIVE OIL FROM THE TREE TO THE TABLE -Second edition 1998), all oils will oxidize and hydrogenate to a tiny degree if repeatedly heated to very high temperatures such as is done in commercial frying operations. Olive pomace oil and virgin olive oil are both highly monounsaturated oils and therefore resistant to oxidation and hydrogenation. Studies have shown oxidation and hydrogenation occurs to a lesser degree in olive oil than in other oils. But in any case, the amount of hydrogenation is miniscule and no home cook would ever experience this problem.
The large refinery-like factories which take unsaturated vegetable oil and turn it into margarine or vegetable lard do so by bubbling hydrogen gas through 250 to 400 degree hot vegetable oil in the presence of a metal catalyst, usually nickel or platinum. The process can take several hours. You cannot make a saturated product like margarine at home by heating olive oil or any other vegetable oil in a pan. We don't know where this weird notion has come from. For more see our olive oil chemistry page
Changing a cis-fat to a trans-fat does not occur on a home stove.
Olive Oil Myth: Cooking in olive oil diminishes the nutritional value of the food.
Olive Oil Fact: Heating food will break down its nutritional value. High heat such as frying is worse than moderate heat such as steaming, which is worse than eating vegetables raw. It is not the cooking oil per se, but the high heat of frying. I am not aware of any edible cooking oil which of itself diminishes the nutritional value of the food cooked in it. Most nutritionists recommend lightly steaming vegetables or eating them raw. A touch of a flavorsome olive oil added at the table will add taste and healthful anti-oxidants. Such is the "Mediterranean diet" which has been shown to help prevent coronary disease and have other health benefits.
If it smokes, the heat is too high. Otherwise, it's a good healthy oil to use.
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Thanx Andy for another super reply on this topic , thanx for clearing the doubts ...
i will add olive oil and kalonji to my meals as well , thanx
Take Care
Umair
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Thank you so much Umair, your prayers mean the world to me :hugfriend :hugfriend
Hope you are doing great now :wink
manal
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Thanks Andy,
For clarifying the facts.
Does it have a different taste then other cooking oils? I mean would it change the taste of the meal?
Thanks Umair.
Zaini.
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Olive oil has a nuttier flavor than other oils and is considered to be a superior oil. However, it does cost more. It can be used for frying but not for high heat frying like deep frying. I am biased on this subject. My ancestors grew olives in Sicily.
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Yes it is way more costly here,Because its imported,i some time cook separately for Little Z,i'll try to use olive oil in her cooking.
Sharmin,
Would you use same amount of olive oil as any other oil,or its used a bit less?
Zaini.
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It can be used for frying but not for high heat frying like deep frying. I am biased on this subject
Andy,
i think that is why doc told me to not to heat that to avoid any kind of complications/questions or mistake , or she won't to go in details of cooking like it is very high temprature for olive oil and you can fry anything in olive oil under this temprature etc etcc ... it make's thhis subject realy big and time killing for a doctor's .... that could be a reason why my doctor shortly replied not to heat olive oil when you can try it in salad .... Nice sharing and very clear instructions & Factial Reply Andy ,,,, Thanx buddy for making this clear to understand .... :high5
Best Regards
Take Care
Umair
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Hi Zaini
I use olive pomace oil for cooking because its flavour goes well with Indian cuisine.You will not notice any change in taste. Extra virgin olive oil doesn`t taste good in our biriyani or curries. But I use it in salads and in chinese dishes.
maha
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Thanks Maha, :hugfriend
I'll keep that in mind.
Zaini.
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I thought you would like to hear this information, so I will post the article here:
A study from the Harokopio University of Athens (Greece) determines that adherence to a dietary pattern close to the Mediterranean diet, with high consumption of fish and olive oil and low red meat intake, has a significant impact in women skeletal health.
Results suggest that this eating pattern could have bone-preserving properties throughout adult life.
Diet is one of the modifiable factors for the development and maintenance of bone mass. The nutrients of most obvious relevance to bone health are calcium and phosphorus because they compose roughly 80% to 90% of the mineral content of bone; protein, other minerals and vitamins are also essential in bone preservation.
Traditional analysis has focused on the relation between a specific nutrient (e.g. calcium) and bone health. But, researchers of the Harokopio University of Athens, Greece, carried out a study in two hundred twenty adult Greek women, which is valuable for the understanding of the effect of meals, consisting of several food items, in skeletal mass.
Scientists examined whether adherence to the Mediterranean Diet, rich in plant foods and olive oil, low in meat and dairy products, and with moderate intake of alcohol, or other dietary patterns, have any significant impact on bone mass maintenance in adult Greek women. They determined that adherence to a dietary pattern with some of the features of the Mediterranean diet, i.e., rich in fish and olive oil and low in red meat and products, is positively associated with the indices of bone mass.
These results suggest Oleociencia News inform- that this eating pattern could have bone-preserving properties throughout adult life.
This paper has been published in 2009 in Nutrition magazine; and has been written by Meropi D. Kontogianni, Labros Melistas, Mary Yannakoulia, Ioannis Malagaris, Demosthenes B. Panagiotakos, and Nikos Yiannakouris of the Harokopio University of Athens, Greece.
Scientific Reference: Association between dietary patterns and indices of bone mass in a sample of Mediterranean women- Nutrition 25 (2009) 165�"171
http://www.medicalnewstoday.com/articles/139709.php
The thing what catched my eye is that they do not talk about the intake of dairy products, but I may have read through it.
Dore
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Thanks for this info Dore. I will be sure to have Little A's phosphorus levels checked - I should have done it with his blood test today but I forgot.
I hope that you are feeling better,
Sharmin
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Maybe is this the right place:
Liver Int. 2009 Jan;29(1):63-72. Epub 2008 May 19.Click here to read Links
Curcumin reduces the toxic effects of iron loading in rat liver epithelial cells.
Messner DJ, Sivam G, Kowdley KV.
Bastyr University Research Center, Bastyr University, Kenmore, WA 98028, USA. dmessner@bastyr.edu
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Dore,
Thanks for the info,i am posting the link again...
http://www.ncbi.nlm.nih.gov/pubmed/18492020
I am giving turmeric to Little Z daily,and we use it in our foods on daily basis :wink .
Zaini.
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I have a question about Folic Acid... When I was in Pakistan (back when I was little), I was taking folic acid, but when I moved to US, the hematologist told my parents to discontinue folic acid. I don't remember why, but I do remember strong emphasis on not taking it, perhaps the docs, back then, thought I could get enough in my diet. I have been emphasized to take Calcium and Vit D and perhaps other vitamins and minerals, but not Folic Acid.. Any clue to why folic acid wouldn't be prescribed for thal patients?? I remember there was a reason behind discontinuing it but i don't remember that reason..
I'd like to hear if anyone else has heard the same, not to take folic acid and why? I know in Pakistan, all docs usually recommend taking it.
I'm NOT saying thals should not take folic acid.
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I dunno the reason, but I too heard for a period that we should not take folic acid. My doctor was deaf for it, so I never stopped. Though folic acid is the only med that I never learnt to take regular. I should take it when I step with one foot in bed but 9/10 I forgot.
Dore
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Hi SF
Here too docs do not reccomend folic acid for thal majors. Their argument is as too why help the body to produce more faulty RBC`s. But my son takes 1mg of folic acid daily.
maha
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Hi ALL :
Here too docs do not reccomend folic acid for thal majors
when I moved to US, the hematologist told my parents to discontinue folic acid. I don't remember why
Same here , my Doctor also discontiued Folic acid almost 2 years ago, i never asked why , , soo dont know the reason ...
Take Care
Umair
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I should take 5mg daily. :biggrin
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I was also giving my son folic acid - Dr. Vichinsky said that it was not necessary so I stopped giving it to him. He didn't say that there was harm in giving it to him he just said that it wasn't necessary ??? ??? My thought is that folic acid has other uses than just helping make blood..hmmm
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From a study, it seems Folic Acid is helpful.
Check out the complete clinical trial results at http://www.ams.ac.ir/AIM/0693/0019.pdf
From the conclusion section of the above trial:-
In conclusion, we recommend prophylactic and routine folic acid supplementation for all patients with β-thalassemia major and intermedia.
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I don't remember where but i read somewhere that folic acid is good for cardiovascular health too.
Zaini.
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I just found it ,
From http://www.yourhealthbase.com/folate.html
A folic acid deficiency has been clearly linked to an elevated level of homocysteine, a sulfur-containing amino acid. High homocysteine levels, in turn, have been linked to cardiovascular disease and a host of other undesirable conditions. t is unfortunately, estimated that 88 per cent of all North Americans suffer from a folic acid deficiency. Obviously, the standard diet does not supply what we need. This has led to the fortification of cereals and other foodstuffs to try to ensure a minimum daily intake of 0.4 mg/day. Although beans and green vegetables like spinach and kale are good sources of folic acid, relatively few people eat lots of vegetables and cooking destroys most of the folate anyway. Realizing the poor availability from the diet many medical researchers now advocate daily supplementation with folic acid. Because folic acid needs the catalysts vitamins B12 and B6 to carry out its functions effectively it is usual to supplement with a combination of the three. Dosage recommendations for folic acid vary between 0.4 mg/day and 10 mg/day or more
I think there is no harm in taking it.
Zaini.
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Thanks Zaini. I guess the reason they say majors don't need it is because they're not making their own blood, but it is needed by many bodily processes and there is a definite need, especially in pregnant women.
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Thanks guys, I will start giving it to him again.
Sharmin
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I think also for those Beta Plus thals, Folic Acid might help in - Whatever little Beta globin is being produced by their bone marrow.
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:ty Guys!
I appreciate your comments. I'll try to get some folic acid too. I can't believe I actually liked the folic acid tablets when I was little, in Pakistan. I don't think I'll be able to find the same tablets here, even if I remembered the brand.
I now have Nigella + Honey mix ready. I took a spoonful today! The burning sensation from it was a lot less, but not completely gone. For some reason, I actually had a harder time taking this mix than the whole seeds the last time. I didn't like the texture and smell of this mix.
Best,
SF
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SF,
I am very glad to hear that you are taking the supplements. I hope that you will take IP6 as well. This is great!
Sharmin
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Not yet, Sharmin. :(
So far, I'm only on Calcium & Vit D. I just started Nigella to help with Hep C, after reading posts on this forum.
I will, however, try to hunt down some good supplements without the iron. It's hard to get something without Iron and high Vit C. I also look for chewables or liquid. And most of the supplements I've seen usually have gelatin in them.. :(
Best,
SF
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I will look send you a list of my son's vitamins including brand names.
Sharmin
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Hi SF,
One of our members Tariq asked Puritan's online support that hat kind of gelatin do they use and they told him they use Bovine gelatin.And i asked an alim here if it was ok to use Bovine gelatin in meds they said yes.
You can buy Puritan's products from www.puritansale.com .
Zaini.
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Hi SF,
One of our members Tariq asked Puritan's online support that hat kind of gelatin do they use and they told him they use Bovine gelatin.And i asked an alim here if it was ok to use Bovine gelatin in meds they said yes.
You can buy Puritan's products from www.puritansale.com .
Zaini.
I hate gelatin! You find it in everthing and they dont use the natural gelatin so much as I want them to use. I dont want to have it either. It is disgusting, really it is! I have my candies and toothpaste from the heatlhy shop, because I (we) dont know where to buy otherwise.
SF: I LOVE folic acid. Mine are yellow (one of my favo colours) and it taste good. :biggrin
(What's an alim?)
Dore
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Dore,
An Islamic scholar is called an Alim.
Zaini.
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Thanks Dore & Zaini,
The reason I don't take gelatin is precisely what Zaini hinted to. Gelatin comes from animal fat. I don't exactly know if they extract gelatin from the animal before or after slaughtering it. If after, I would not take it. If before, that would be okay as long as the source is either chicken or bovine, NOT pork.
In general, I have always avoided gelatin. It's commonly found in candies/gums and in certain other food items. Most supplements also contain it. I was interested in taking the Centrum Silver, which most thal adults at OCH take, but I found out it had gelatin and the source was either chicken or I THINK pork. The manufacturer mentioned that they have no way of knowing which one is put into which vial, as they use whatever is available at the time of manuf. and don't keep track.
Dore, my folic acid tablets were also yellow and they actually tasted GOOD! Would you please tell me the brand of it? Thanks!
I'd definitely appreciate further help in finding either chewables or liquid supplements with no gelatin. I'll definitely check out the Puritan website as both you, Zaini, and Andy have liked it so much.
Thank you all very much!
-SF
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Hi SF ,
Osteocare's main page :
http://www.vitabiotics.com/Osteocare/
Osteocare Tablets ,
http://www.vitabiotics.com/Osteocare/tablet_formula.aspx
Osteocare Chewable
http://www.vitabiotics.com/Osteocare/chewable_formula.aspx
Best Regards
Umair
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Thanks, Umair!
Best,
SF
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Your Welcome SF,
Ops i missed to reply this thread, but its nothing new that i missed any thread :grin ....
@ Topic :
Check these site for more Vitamin & Mineral supplements and Anti-oxidants ...
www.puritan.com and www.gnc.com ....
but with heart palps, it is very important that you are taking calcium and magnesium together, along with vitamin D. Calcium imbalance can contribute to palps if you are not also taking magnesium. The two minerals control either side of the heart beat and if you take calcium without magnesium it can lead to palps.
P.S The Tablet i metnioned in my last post ( Octeocare ) contains Vit-D3(natural form), Calcium, Magnessium, Zinc and few more minerals ....
Best Regards
Take Care
Umair
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Andy,
Thanx for sending me IP6, Nigella and millk thistle although i was saying you to wait until i failed to get/find these medicines here in in my city, but you sent , bcoze you want me to start these ASAP , and you made me emotional and my i was having tears in my eyes when i red the line in wat you said " I wanted to make sure you get started with milk thistle. " " I have waited with other patients to send milk thistle and the outcome was loss of friends. I was not about to hold off sending this to you, so don't argue about it. " .... Aah buddy , i have started all these except IP6 and i found it here too ... but credit of giving a start goes to you bcoze i know i m a lazy boy to visit chemists to find out the things i want .. buddy , its not the first time that you did something for me , you did alot of more favours to me , i m realy thankful of you .... you got a big heart buddy .. Thanx Ya alot ... :thankyou2 ... buddy, i dont kow how can i thank you , thank you is a very short in typing and meaning ... May God Bless you ,... i hope you nevver mind wat i said and also you're not offend by wat i said... if feel something shouldn't be her in my this post you may send me PM i will edit this post ...
@ All other members ...
please , i request to you all dont send anything ,i m affraid of talking about supplements and meds bcoze of these kind offers from a few very kind-hearted members ... i m super fine and getting my supplements as i mentioned before that GNC's products are available here in my City ... soo dont worry about me , i m a young strong boy ( Boy, bcoze , i want to enjoy my teenage a little more hahaha ... if you cant believe on wat i said , have a look of my pic in gallery :grin ) ... i will be more happy if you people wait for call for help ... soo please let me talk over vitamins & minerals ad availablity and un-availablity of the supplements here in my city freely , to share the knowledge that i gain while finding good supplements in my area to help other thals ..
to help other Pakistani and FSD'ians thal , soo, they become to get best available supplement over here ....
hey , this post is gonna soo serious na ??? ... sorry for aal that i said here on this forum .. if i or my words offend anyone please ignore the words and sorry in advance for that .. i hope know one feel ofended of wat i said .. this wat i want to say to a long time the time when i Andy Sent my that Package , i do appreciate wat andy did for me and i respect the feelings of all of you .. i wanted to say thanx to andy and to share with you all wat how commited andy is , to this site and to help all the people here . .. but , i think there are alot more people who deserve far more than me .. andi m getting all these here soo .... dont worry, i will let you know when-ever i failed to et anything here in my city ..
Edited : i dont mean to show anger or i m not talking in angery tone .. i m saying this all very politely and in smiling manners .. soo , please dont think that i m angery or to show anger .. i love the way you all are supporting me , its is just to say wat i feel and to make sure a few things. .. dont mind it and please appreciate wat i said , i will be happy to get positive response to you all, over it, ...
once again a big...big.... very big :thankyou2 Andy .....
Best Regards
Take Care
Umair
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SF, I dont know the brand. I get hem in a box of the pharmacy. though there was a short period i get them in there orginally box, but I can't remember the name. I am sorry. Good luck with your search!
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My daughter, Wei, is three. She was adopted from China at 20 months old and has been receiving transfusion pretty much every three weeks since coming home. Month after month I asked her doctor about vitamins for her as I wanted her body to be as healthy as possible. Month after month the only thing anyone at the hospital could tell me was "folic acid". I decided to take matters into my own hands and found you. The next day I went out and purchased all that were recommended. I gave her 1/2 dose until we saw the doctor. I think he approved the full dose, but I'd have to double check if he approved the full or the half. Anyway. Her last transfusion was postponed for a week. We went back today (3 weeks post transfusion) and her Hgb was 9.7! We were postponed one more week!
Going from three weeks to four would be incredible!!!!!!!!
Thank you, thank you, thank you for researching and sharing what you learned!
A thankful mom,
Lori
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Hello Lori
You did the right thing for Wei, supplements, minerals and antioxidants are important pilliars in the management of thal. Keep searching ad reading and please do share any of your concerns.
How about her ferritin levels and what is the plan for chelation?
Keep it up
manal
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I think I have found what I had been looking for, for some time now, a chewable multivitamin and multimineral without iron!! It, unfortunately, contains some Vit C :(
Manal, thank you so much for your informative PM! :hugfriend
Below are the specific supplements the multi-vit/multi-mineral that I bought today contains.
Vit A (4000 IU, 75% as beta-carotene)
Vit C (75 mg)
Vit D (400 IU)
Vit E (70 IU, it's dl-Alpha Tocopheryl Acetate, not d-alpha)
Thiamin (Vit B1 - 2.2 mg)
Riboflavin (Vit B2 - 2.7 mg)
Niacin (12 mg)
Vit B6 (7 mg)
Folic Acid (500 mcg)
Vit B12 (25 mcg)
Biotin (45 mcg)
Pantothenic Acid (10 mg)
Calcium (200 mg)
Phosphorus (125 mg)
Iodine (100 mcg)
Magnesium (50 mg)
Zinc (15 mg)
Selenium (22.5 mcg)
Copper (2 mg)
Manganese (4.5 mg)
Chromium (100 mcg)
Molybdenum (25 mcg)
It also contains the following:
Nickel (5 mcg)
Silicon (4 mg)
Tin (10 mcg)
Vanadium (10 mcg)
Lutein (250 mcg)
In addition to above, I also take Calcium + Vit D Supplement that contains the following:
Vit D (400 IU)
Calcium (600 mg)
Magnesium (40 mg)
Zinc (7.5 mg)
Copper (1 mg)
Manganese (1.8 mg)
Boron (250 mcg)
Andy,
I would like to ask you if it would be okay to take this much Vit C (75 mg)?
On the multi-vit container, it's suggested to chew one tablet a day. I would like to ask you if taking one of each (1 Multi-Vit tablet and 1 Calc + Vit D tablet) would be okay, or would you suggest a different combination (the above don't fulfill the exact dosage recommended by you)?
Also, is there anything in these supplements that could potentially be harmful to beta-thal majors and that I should not be taking?
Thank you so much!
So, it looks like I'll only be missing IP6.. I'll try to look that up at Puritan.
Best regards,
SF
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SF,
If you use desferal you can take this multivitamin with your desferal. I give my son his multi as well as another 100mg vitamin C pill with his desferal at night.
Sharmin
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Hi Guys,
I found a Vitamin B supplement for Lil Z,its Neurobion,it has
Vitamin B1 100 mg
Vitamin B6 200 mg
Vitamin B12 200 micrograms
In addition to that she is taking folic acid or B9 10 mg separately,so is that too much or just enough?
Also can i take it? But please tell me if its going to increase my appetite because i really can not afford it :rotfl :rotfl
Zaini.
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Zaini,
But please tell me if its going to increase my appetite because i really can not afford it
You're too cute :biggrin
The B vitamins are higher than what I am giving lil A. He gets 50mg. They are however good for you, you will have more energy too. (I take 100mg when I remember :wink.)
Sharmin
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:cloud9
So then i should give it on alternate days to Lil Z?
Zaini.
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BTW, the multivit I bought yesterday is comparable to Centrum Silver but is Walgreens brand.
It's made especially for Adults over 50. But, I think the main difference between regular and Silver Supplements is that it does not contain iron. Also, I'm glad to know that it contains no gelatin that I won't take. The source of gelatin is white fish which is totally fine!
Please do let me know how many tabs I should take a day and whether it sounds like a good supplement?
Thanks!
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SF,
Vit C (75 mg)
Vit E (70 IU, it's dl-Alpha Tocopheryl Acetate, not d-alpha)
Vit E is very less in it i think. I take 400 I.U daily and dose upto 600 I.U is considered safe (if natural vit e is used)
Regarding Vit-C, I've seen a spike (a big one) in my S.feritin in the past six months while i was taking around 100 mg Vit C daily and also vit-c is only recommended with DFO so you will not be able to take this supplement on the day you are not on DFO. While i did some research on it i found out that Vit-C is not recommended to patients with high ferritin and specially if they have overload in heart. Our forum experts can shed some more light on it
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SF n Tariq,
:agree to Tariq bhai , that it has realy small ammount of vit-e , ... and you can take upto 600mg ( i m talking about Natural Vitamin E ) ... but you can't take high doses of Dl-Alpha tocopheryl acetate ( synthetic one ) .. i dont remember but Andy has mentioned it somewhere .. Got it ..
Not only is synthetic vitamin E much less efficient, but it shouldn't be taken in high doses. When taking more than 100 IU of E daily, it needs to be natural E. My doctor now warns against using synthetic E in high doses.
and as for vitamin-c , i believe that you can take this multi-vitamnin twice while you are on chelation with DFO IF ( a big IF ) you're not already having alot of iron in your Blood stream ( S.fe show's the iron in blood , if i m not wrong ) , so i think that if you're having alot of iron in your blood stream then you dont need to add up more iron in your blood stream to chelate , i think you can start vitamin-C in the case your S.fe come's reayl down then ( and if urine colour isn't changing during cheltaion ) . other wise it could harm your heart ... its my opinion dont know if you're gonna agree r not but its wat i think ....
PS , be careful with medicine dont forget to ask your doc bfore dooing anything related to the medicini ....
Best Regards
Take care
Umair
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Sharmin, Tariq, and Umair,
Thanks for all your feedback. :hugfriend
After reading Tariq and Umair's posts, now I'm confused whether I want to take this multivitamin or look for a better one with natural vit E and hopefully no vit C or at least a lot less of it.. :dunno I like lemon/lime and drink OJ and have other citrus stuff, so, I don't want to add to my current daily intake of Vit C through supplements.
Even if Vit C is bad (in large quantities) for us, don't we still need at least 100% DV of Vit C for normal function? In other words, is it ok not to worry too much about Vit C we're getting in our diet, but just don't take more through supplements?
Regards,
SF
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Vit E (70 IU, it's dl-Alpha Tocopheryl Acetate, not d-alpha)
When taking more than 100 IU of E daily, it needs to be natural E. My doctor now warns against using synthetic E in high doses
Hi SF,
you can take this supplement although it har synthetic Vit-E according to the quote from Andy , i think you can take 100IU synthetic and its not a probleme or or good reason to left that supplement you found ... that has only 70IU synthetic Vit-E ( much less than 100 na ) ad Andy's doctor warned him for taking more than 100IU synthetic oone .... hey about vit-C , i have another option , Guava a medium size guava contains's 125 mg of vit-C in it , i think nothing is better than this natural vit-c supplement and yes orange is also a fine choice as a medium size orange has 136mg iron if you ... when my S.FE was a little high and i was asking for the permission to my doctor to start Vit-C even for lower doses , she always said no ( coze i was and still sometimes have the symptoms of Congestive heart failure ) , but once she said " if you wana start vit-C then you can take an orange or guava for that reason ... isearched on internet and found that Guava and orange has the almost same vlue of daily vit-C intake that people are saying to take (daily intake 100-125mg in dividend doses, and for chelation day its upto 200mg in dividend doses , ) ..
In addition to above, I also take Calcium + Vit D Supplement that contains the following:
Vit D (400 IU)
Calcium (600 mg)
Magnesium (40 mg)
Zinc (7.5 mg)
Copper (1 mg)
Manganese (1.8 mg)
Boron (250 mcg)
you can take Osteocare as a replacement of this supplemetn you mentioned ... please vist their site to read complete details ....
about first mult-ivitamin :
as you're compliant with chelation and doing it 5 days a week , you can take this suppllement once just after starting chelation ,,,.... its my personal opinion soo please consult your doc before doing anything or starting any supplement ... i always ask to my doc first before satrting anything new ( i asked even before starting osteocare ) so it will be best to ask your doc first , but after gathering the info about a few good supplements , soo it will bcome easy for your doc to chose one of those good supplements ....
Best Regards
Take Care
Umair
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SF,
I like lemon/lime and drink OJ and have other citrus stuff, so, I don't want to add to my current daily intake of Vit C through supplements.
Yes its better not to take vit c thru supplement if ur already taking naturally
In other words, is it ok not to worry too much about Vit C we're getting in our diet, but just don't take more through supplements?
true in case if ferritin is high like > 5000
Umair,
Guava a medium size guava contains's 125 mg of vit-C in it
Again this is too much for high ferritin
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If you are not taking it with desferal, you should keep supplemental vitamin C to a minimum, if at all. If your ferritin is already quite high, it may be best to not take extra C until you get it under control, as there is too much free iron in your system and adding vitamin C can cause iron "clumping" in your heart and reduce heart function. I feel the best source of vitamin C for thals not taking it with desferal is from diet. You can eat citrus, but eat it as a snack between meals so it does not enhance iron absorption from your other foods. A mid-afternoon orange is a great idea. Even grapefruit with breakfast is OK if you are not having any iron containing foods, but this is a personal preference, so look at what you're eating before adding citrus with the meal.
And everyone, please do not ignore the overwhelming evidence that has built about the great importance of vitamin D, the best source being the sun. Sunlight will do good for you. In the winter months, take supplemental vitamin D of at least 2000 IU daily. I was just outside on this gorgeous day and the difference the sunshine makes is incredible.
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Thanks, everyone, for all your feedback and recommendations!
Regards,
SF
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Today I ordered ip6, and if all goes well I can pick it up tomorrow. I have no clue how it looks, but my weight is 42 at the moment & I moved Exjade to the evenings (because of the exams during the day).
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I take Multiforte capsule which has got da following nutrients. I have to reduce Vit E. I was asked to take 1000 mg per day. Kalzana which has got Calcium and Vit C.
MULTIFORTE® CAPSULE
Multivitamin
Multiforte is a multivitamin formulation intended for oral use.
Each Multiforte capsule contains:
Vitamin A USP 10000iu
Vitamin D2 USP 400iu
Vitamin B1 USP 5mg
Vitamin B2 USP 5mg
Vitamin B6 USP 1.5mg
Vitamin B12 USP 5mcg
Niacinamide USP 50mg
CalciumPantothenate USP 5mg
Folic Acid USP 1mg
Vitamin C BP 75mg
Vitamin E USP 15mg
Vitamin K USP 0.1mg
Novomix Insulin and Glcuphage 500mg for Diabetics
In addition to the minerals and vitamins i take
Climen for HRT
Deferiprone and desferal for iron chelation.
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Got a qustion:
How many Vit D and Vit B complex should I take? (I can't remember anymore :shy
B complex:
B1 50mg
B2 50mg
B3 50mg
B5 50mg
B6 25mg
B12 50mcg
Folic Acid 50mvg
Biotine (?) 50 mcg
Choline(?) 20mg
Insositol 50mg
PABA (?) 50mg
Their advise is to take daily 2 tablets.
Thank you in advance
Dore
(p.s. I know I must take 400IU of Vit E daily..)
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Dore,
This B-Complex seems good to me and once in a day is enough i think,be sure not to take it on empty stomach,as for vitamin D,have you ever tested your levels? You better get it tested,other wise i think 1000 IU would be enough,unless you go out in sun light a lot.
hope this helps,
Zaini.
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I need more help to create a good supplement plan. My weight is <45kg. If thats help.
Q1: Which supplements should I take?
Q2: How much should I take?
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Dore,
My weight is also < 45 kgs.
One thing I came to know is that I dont handle adult supplements very well. For a long time we could not understand why any adult medicines, including antibiotics made me even more sick, or I would react to it, like allergies. Like everytime i had mild fever and i took paracetamol to bring it down, i would get very bad chills and followed by very high fever.
Then a few doctors started giving me medicines meant for babies and little kids. And it worked better and faster.
The supplements you take should be also calculated based on your body weight if possible, IF your doctor says its ok to do that.
The other option is to start with a low dose and gradually work it up to the dosages you need. That gives time to the body to adjust and use it all better.
I'm sorry I didn't answer your question. :scratch But I wanted to share this with you, because of your low weight.
:smiley
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You did answer questions Preety. I am glad I am not the only one. People do judge very soon that I have ana, but I always have been so small. That's who I am or who we are. :hugfriend
I saw I posted twice the same message within a short time without remember it! The Q is stil valid. All my vitamin boxes will be empty soon and I should make a new plan. I find a good new shop so that's not the problem anymore. I just couldnt choose last time and need a little extra help.
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Hi,
my son s physicians never recommended any vitamins and mineral supplementation. He is about 192 cm tall and weights only 64 kg. He eats al lot of meat, rice and noodles. occasionally he will eat beans and some veggies and salad. He has been diagnosed with lactosis intolerance and thus he is limited to the type of cheeses he may eat. What supplementation and vitamins should he take?
Desperate
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Andy:
Thank you for going into detail about which vitamins and supplements Beta Thal's should be taking. I am a Beta Thal Minor and just within the last couple of years my fatigue has gotten really really bad and I am sick with colds, flu pneumonia or something almost 9 months out of the year and my job is now in jeopardy. I have been to so many different doctors and finally stumbled on a Hematologist that gets it. I have just ordered and am looking forward to seeing the results of:
Supershots Wheatgrass from Grassfactor
Vitamin B Complex; Calcium with Magnesium & D; and the Natural Vitamin E-400 IU Mixed Tocopherols
(These are ALL FROM PURITAN)
I also just started Folic 1mg from my Hematologist.
Thanks, dcan8823
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Hi Andy
Pls suggest dose of Osteocare tablet,along with is it necessary to take centrum silver tablet for other Vitamins?osteocare alone is enough to fulfill requirements of vit?
komal
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Hi Komal,
I would suggest taking both since Osteocare provides minerals and Centrum provides vitamins.
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Salam and Hai to all,
I'm writing in this forum to get an advice from others on my son supplement intake.
He is confirm HBE/BETA thalasemia intermedia.He had gone through his 1st transfusion on 13 Oct 2011.He will be 1 year on 22 december.
He current diet are as follows:
1. Breast milk
2. Rice Porridge with vege and fish
3. Fresh cut fruit-papaya and banana
He current supplement are as follows:
1. Acis folic 2.5ml
2. Multivitamin without iron 2.5ml
3. Drwheat grass supershot 2.5ml <he just started taking this on 22 November,as this product doesn't available in Malaysia.I get it from Singapore.the nearest country>
I need other advice on other supplement that we should include for 1 year old baby.His last HB is 7.5 and our next appointment is schedule on 9 Dec 2011.
Thank you for time.
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His diet is very good and the only other supplement I would suggest is 100 IU daily of natural vitamin E. Do not use synthetic vitamin E. And keep him eating healthy foods like he is now.
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hai Andy,
thank you for your reply.I will look into this. have a great week ahead.
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Hello Everyone,
Please review following supplementation I bought today after being convinced by reading this thread that I must do this. Please note that I have never used multivitamins/minerals before except once, so guide me in whatever area you may think is necessary, like pill timings - dosage - precautions etc. etc.
I never had any major complications or side effects and my spleen is intact, and eat like normals. Are these supplements to be taken life-long? About when the supplements start showing their positive effect in our bodies?
Here's what I bought:
1. Neuro-B
Per tablet: Vitamin B1 100mg + B6 100mg + b12 0.15mg. Pharmacist said this is Vitamin B- Complex
2. Osteocare
2 tablets: Calcium 800mg + Magnesium 300mg + Zinc 10mg + Vit D (D3 200iu) 5ug
3. Vitamin D3
Each 1 ml drop contain - Cholecalciferol Vit D3 2800IU
4. Good 'n Natural
Omega-3 Fish Oil 1000 mg - per softgel - cholesterol 5mg
5. Folic Acid - 1mg
6. GNC
Natural Ultra E 400: Per capsule: Vitamin A 400IU + Vitamin E 400IU (d-alpha tocopherol
7. GNC
Mega Men Sport
Per 2 tablets :
Vit A 2500IU
Vit C 60mg
Vit D 200iu
Vit E (d-alpha) 15iu
Vit K 80mcg
Vit B1 Thiamin 1.5mg
Vit B2 Riboflavin 1.7mg
Niacin 19mg
Vit B6 2 mg
Folic Acid 200mcg
Vitamin B-12 2mcg
Biotin 300mcg
Pantothenic Acid 5mg
Calcium 200mg
Iodine 150mcg
Magnesium 50mg
Zinc 15mg
Selenium 55mcg
Copper 2 mg
Manganese 2mg
Chromium 120mcg
Guanidinoacetic acid 100mg
L-Isoleucine 50mg
L-Leucine 50mg
L-Valine 50mg
Glycine 30mg
Alpha Lipoic Acid 25mg
L-Methionine 20mg
L-Glutamine 15.22mg
Taurine 15.22mg
beta-Alanine 12.5mg
Choline 10mg
Inositol 10mg
L-Carnitine (fumerate) 7.06mg
Silica 4mg
Boron 2mg
Coenzyme Q-10 950mcg
Lutein 950mcg
Astaxanthin 50mcg
Vanadium 10mcg
Please guide for best dosages and their timings, if I need to add anything or I may skip anything? I'll surely miss IP6 , i couldnt find it here in Riyadh, Saudi Arabia.
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It looks like an excellent program. I tend to take all my supplements after meals, as it makes them easier to digest. It is important to work out a routine that is agreeable to you and your stomach.
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Dear Andy are you satisfied with the calcium / magnesium ratio? Please guide me how to take those pills (dosage and timings) because they are 'many', and I am a baby in this field ???
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The ratio is OK. You an strive for a 2:1 ratio but it doesn't have to be exact.
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Pardon me. I am having problem in dividing these 7tabs of supplements plus 3 tabs of kelfer. Set kelfer aside, I have to take these supps together after a meal in breakfast/lunch/dinner once or i can randomly take supps round the clock in divided doses . for e.g. Folic Acid, Calcium, Vit D once after breakfast ... then Vit E, Vit B after lunch ... and last the day with left over fish oil/multivitamin ? Or there has to be some directed approach.
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Find what works for you. You can split them up and take them with meals throughout the day. I generally take after breakfast and dinner, but whatever works for you is the way to do it.
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Its now 4th day I am taking those supplements and its gr8.
On breaking fast: Vit B- Complex , Vit E and Multivitamin
On starting fastL Folic Acid, Osteocare, Vit D, Fish Oil
I cant even imagine we forgot to buy MILK THISTLE :banghead
Its a must I guess for my liver health ...
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Waleed,
"2. Osteocare
2 tablets: Calcium 800mg + Magnesium 300mg + Zinc 10mg + Vit D (D3 200iu) 5ug"
You sure you want to take 1600 calcium and 600 mg Magnesium/daily ? Isn't it high?
And oh, what is Osteocare? Is it some brand name for a tablet? If so let me know so I can purchase it as well. :)
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Dear Pratik,
It means two tablets together yield Cal 800 and so on ... Yes Osteocare is brand name, its just famous in my town thats it. You may select that gives you required cal/mag levels and suits your pocket :wink . i will never buy osteocare for this much if I were in my country :biggrin
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dear andy...
Thanks a lot for the related information that i have been searchin for.
i have a thal patient daughter, she was diagnose at the age of 2 and now she was already 4 year old, we already undergone 3 time blood transfusion since tha last time she was diagnose and the last transfusion was just last june 2012, and i feel that her situation was getting worst since we dont know exactly what foods or diet should we let her to eat. since she was still at her very young age, its very difficult to control her diet.
is there anything or any ways you can suggest on how we can manage her health situation before its too late...
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dear andy...
Thanks a lot for the related information that i have been searchin for.
i have a thal patient daughter, she was diagnose at the age of 2 and now she was already 4 year old, we already undergone 3 time blood transfusion since tha last time she was diagnose and the last transfusion was just last june 2012, and i feel that her situation was getting worst since we dont know exactly what foods or diet should we let her to eat. since she was still at her very young age, its very difficult to control her diet.
is there anything or any ways you can suggest on how we can manage her health situation before its too late...
Hello Wacon, welcome to thalpal. I assume your daughter is Thal minor?
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Hi everyone..need ur opinion here..my name is Nur, Hbe Beta Thalassaemia, transfusing every 2 month and now on L1 and desferal. Is that correct pure marine collagen has high level of iron and thalassaemic should avoid it? How can we take collagen supplement without iron? And can thalassaemic wear corset for beauty and weight purpose?Thanks.
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I don't think that collagen is high in iron. Iron is not listed as a nutrient in the various collagen products I have seen for sale. I doubt iron is a concern.
As far as corsets, it is OK to wear as long as they don't endanger the rib bones. If your bones are particularly weak, caution should be taken.
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IP6 (phytic acid) where can i get this in greece?? could anyone please help me?
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I want to ask one thing.
I'm taking Osteocare (800mg calcium + 300mg magnesium + 10mg zinc). 800mg calcium is 100% RDA (Recommended Daily Allowance of dose).
Andy, you mentioned we can take upto 1500 mg.
I was wondering if I could switch to 3 tablets from 2 (currently)? So it would yield me 1200mg calcium + 450mg magnesium. Can I do it? IP 6 also provides around 50mg magnesium and 100mg calcium or such so in total it'd round up a good figure. I find I need to make my bones even more stronger as I'm an osteoporosis patient and it's still affecting the way I live my life.
Would there be an overdose or such?
-P.
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Pratik,
That depends on your body weight. If you take more than you need, it only washes through you, so it's something of a waste.
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Pratik,
That depends on your body weight. If you take more than you need, it only washes through you, so it's something of a waste.
I do around 43 kg currently, would it be appropriate?
-P.
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Your current dose is fine for your weight.
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Your current dose is fine for your weight.
Then roughly around what weight could I increase dose more by 400mg (calcium)?
-P.
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Please someone help me!! I have thal minor and celiac disease. I have gone up to 30 years of age without iron supplements! When I got pregnant with my first, my doctor tole me to take 3 iron pulls a day 300mg. I did and continued to do so with my other two children. After my second child was born 2007. I started losing weight, major tummy troubles was vet sick and very thin. 2011 I was diagnosed with celiac disease. So basically for 7 years I have been on and off of iron supplements. I was told I had low iron, anemia etc. 2 weeks ago I started taking a new multi vitamin called CeliAct. I dropped the iron supp. As I was taking 1 300 mg daily. I never knew that thals were no supposed to take iron. I did what my doctor told me to do. What should I do, and what tests to I need to check to see if I indeed need iron.
Here is the link of the vitamin I am taking any advice would vibe greatly appreciated. This is completely stressing me out and consuming my every being!? I am scared now that I did damage with all that iron.
www. Celiact.com
Thanks
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Please someone help me!! I have thal minor and celiac disease. I have gone up to 30 years of age without iron supplements! When I got pregnant with my first, my doctor tole me to take 3 iron pulls a day 300mg. I did and continued to do so with my other two children. After my second child was born 2007. I started losing weight, major tummy troubles was vet sick and very thin. 2011 I was diagnosed with celiac disease. So basically for 7 years I have been on and off of iron supplements. I was told I had low iron, anemia etc. 2 weeks ago I started taking a new multi vitamin called CeliAct. I dropped the iron supp. As I was taking 1 300 mg daily. I never knew that thals were no supposed to take iron. I did what my doctor told me to do. What should I do, and what tests to I need to check to see if I indeed need iron.
Here is the link of the vitamin I am taking any advice would vibe greatly appreciated. This is completely stressing me out and consuming my every being!? I am scared now that I did damage with all that iron.
www. Celiact.com
Thanks
Hi Chili,
Thal Majors cannot take iron supplement as they already are iron overloaded but thal minors taking iron pills is just fine. Although I feel 300mg (if daily) is little or very high dosage.
Have you got your ferritin (the concentration or amount of iron present in blood stream) report done recently?
-P.
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Please someone help me!! I have thal minor and celiac disease. I have gone up to 30 years of age without iron supplements! When I got pregnant with my first, my doctor tole me to take 3 iron pulls a day 300mg. I did and continued to do so with my other two children. After my second child was born 2007. I started losing weight, major tummy troubles was vet sick and very thin. 2011 I was diagnosed with celiac disease. So basically for 7 years I have been on and off of iron supplements. I was told I had low iron, anemia etc. 2 weeks ago I started taking a new multi vitamin called CeliAct. I dropped the iron supp. As I was taking 1 300 mg daily. I never knew that thals were no supposed to take iron. I did what my doctor told me to do. What should I do, and what tests to I need to check to see if I indeed need iron.
Here is the link of the vitamin I am taking any advice would vibe greatly appreciated. This is completely stressing me out and consuming my every being!? I am scared now that I did damage with all that iron.
www. Celiact.com
Thanks
chili - Welcome to thalpal,
Iron would be needed if you are truly iron deficient. This can be found out by undergoing an iron panel testing. The Iron panel tests consists of serum ferritin, serum iron and total iron binding capacity.
Many doctor's who do not know about thalassemia and Iron unknowingly prescribe Iron which does not help if a person is NOT Iron deficient.
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Narendra has advised you correctly about iron. I don't think anyone, thal or non-thal should take iron supplements unless an iron panel has been run and IDA has been diagnosed. Long term iron supplements can cause damage to organs as the iron builds up. Most patients will show an increase in Hb after one month on iron. If this does not happen, IDA cannot be assumed. Iron is also rough on the digestive system, so those with celiac should be very careful about what form of iron they take. Injections may be necessary when needed, so as not to disrupt the digestive system even further.
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Thank you for getting back to me. The last time it was checked was in 2010 and I was low...I was really anemic, very malnourished, and sick. I kept taking the iron supplement, and felt much better. I just dropped it as I started a new supplement called celiAct. I am having another blood panel done on Feb 14th. Not sure if I should keep taking the iron, as now that i am not on it I feel a little weaker. are the vitamins I am taking sufficient. please get back to me!
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Hello Andy,
I was reading through this post, very useful information. However, I feel we could have one chart with Age - Weight along with recommended and maximum dosage for various vitamins / supplements for benefit of all.
Kindly let me know your thoughts.
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Hello Andy,
I was reading through this post, very useful information. However, I feel we could have one chart with Age - Weight along with recommended and maximum dosage for various vitamins / supplements for benefit of all.
Kindly let me know your thoughts.
If anyone gives me proper rough table details, I'll happily make a nice presentation in image format in photoshop!
-P.
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Yes, it should be done.
I will try to send u details
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is anyone able to provide the table with all the details on supplements / vitamins along with dosage as per age / weight??
Dharmesh,
any updates from your side?
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Milk thistle works wonders.
Yesterday's reports:
SGPT: 49
SGOT: 45
ALT/AST have hardly been these good, always were above 80, if not, hardly around 65.
I take around 500mg/day (1 250mg capsule in morning and other one after dinner).
I'd suggest this to anyone to be safe from possible liver problems.
-P.
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Yes, it should be done.
I will try to send u details
Hi Andy, Dharmesh,
Can you share a chart for useful vitamins / supplements along recommended dosage as per age / weight? this will benefit all thal.
thanks!
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Hi,
Has anyone created a dietary/supplements/vitamins/medication chart and its recommended dosage by age/weight etc.? Where can I find this chart in this site?
Regards,
Himanshu
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No still not :-\
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Yes, I think we need to come-up with this chart for benefit of all.
Also, I wanted some advice on coming up with optimal plan for supplements. Current, I am following the below routine:
Body Weight: 18.5
Morning empty stomach: Start with supplements - ZincoVit (10ml) + Calcimax P (10ml) + Folic Acid + Vit E (200 IU) + IP6 / Inositol (~1.2 g / 440 mg)
Afternoon: Asunra 400 mg
Evening: Asunra 400 mg and L-Carnitine (1000mg, just started with this).
Had a few questions:
is anything missing in the current routine?
is it okay for IP6 to be administered with other supplements?
is efficacy of Asunra reduced if it is had after meals as opposed to having it prior to meals?
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Hi, I need some help with supplements & Vitamins.
I am currently on a daily Exjade dose of 1500mg.
Vitamins and Supplements, I am taking:
Folic Acid 10mg
Vitamin C 250mg
Calcium 600mg
Vitamin D 1000iu
Vitamin E
Could any one advice me, what dose of daily magnesium I should intake?
Moreover, I am 27, should I take a higher dose of calcium?
I have been taking Vitamin C from a young age as I was on Desferal. Earlier posts in this topic, suggest only to take Vitamin C when using Desferal. So, since I am now on Exjade should I STOP taking Vitamin C?
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Hi Luana,
You should be taking magnesium at about 1/2 of your calcium dose, so 300 mg daily.
Your vitamin C intake is considered high for a thal major, but before advising a dosage, I need to know if your iron load is under control. If it is not and your ferritin is above 1000, you should take no more than 250 mg C daily.
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Hi Andy and all,
I am new here. I really need your help. I have a 4 and a half yrs old son with HB E and Beta Thal. His current supplements are as follows:
- Vitamin E-400 IU
- Calcium 5ml
- Acid folic 5mg
Is that ok? He should take them daily, monthly or stop in a period ?
I am from Viet Nam. In my country, we don't know and don't have wheatgrass. Could you pls explain for me? Where i can buy it in US ?
Next time (may be 15DEC), my friend will be in US for a half moth. I want to ask her to buy some supplements for my son, for ex Yummi bear as your advice in the last post. Plls give me some name of supplements that is good for my son.
Pls help me. I am looking for hearing from you
Thanks all.
Vy
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Tell your friend to bring back wheatgrass powder, as that is easiest to mix. My preferred type is kamut grass, as this is the original form of wheat. If kamut grass can't be found, use wheatgrass. I would suggest taking the vitamins every other day at this age or taking lower doses daily.
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Hi Andy,
Many thanks for your help. In our country, RICE is the main food, but i 've heard that RICE is not good for Thal. Is that right, Andy?
And could you pls tell me how to cook wheatgrass or kamut?
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Rice is good food and there is no reason thals should avoid rice. It is best if it is whole unrefined rice, as the bran contains IP6 which is a very good antioxidant and natural iron chelator.
You don't cook wheatgrass. If you grow it fresh, the young sprouted leaves are juiced and then the juice is drank. The juice tastes much ,ike grass, so most people use tabs or powder.
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Hi Andy,
I 've just found more info about wheatgrass. I find in Amazon many band of wheatgrass so that i don't know what brand is the most favourite.
http://www.amazon.com/s/ref=nb_sb_noss_1/182-8127557-4706901?url=search-alias%3Daps&field-keywords=wheatgrass&sprefix=wheatgra%2Caps&rh=i%3Aaps%2Ck%3Awheatgrass
Pls help me once agian if it does not disturb you.
Many thanks for your help Andy.
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Any of the organic brands are suitable. One brand I have used and think is good can be seen at http://www.amazon.com/Green-Kamut-Organic-90-Powder/dp/B00028PUAU/ref=sr_1_1?ie=UTF8&qid=1386819261&sr=8-1&keywords=kamut+grass
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Hi Andy,
Most of the wheatgrass or kamut also have iron. Ferritin of my son is about 500. I wonder whether kamut or wheat will affect to his ferritin or not?
Tks Andy.
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One serving has 1% of the daily requirement for iron. This is quite low and absolutely not of concern.
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Hi Andy,
I used seabuckthorn oil softgels, and i feel more energetic. Contains a lot of vitamins, and it's good for the liver. It's the only thing that worked for me so far. What is your opinion on this?
And about folic acid... i feel really dizzy and my vision blurs after i take it, so i do not take them anymore. It could be side effects or just coincidence?
Thank you for being here for us!
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Sea buckthorn is an excellent antioxidant and good source of many nutrients. For folic acid, try it in the form of L-Methylfolate. Many people find it more tolerable and it works much better.
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Hi Andy,
I am a thal major 27 years old, transfusing 2 packed red cell every 15 days. I was taking 500mg of calcium daily from almost 10 years. 2 Years before I came to know from Dexa-Scan that osteopenia has been developed in my bones. So my Dr. Advice me to take 1000 mg of calcium with vit.D calcirol scehets.
Now, my Dexa is some what stable but slightly down even after increseing calcium.
Now, I came to know with some interesting facts about calcium suplements that max calcium suplements we use contains calcium carbonate salt. Prolong consumption of which can leads to stone formation in kidneys.
I have read that when someone has to take calcium suplement for long times he should use suplements with calcium citrate which is more soluble in water than calcium carbonate.
Also taking calcium citrate with mellate i.e. Calcium citrate mellete increase the absorption of calcium by 25% more that calcium carbonate.
Now the resoan for using calcium carbonate in supplements is its low cost as calcium carbonate tab is available @ Rs 3-4 pr tab of 500mg in India and of calcium carbonate mellate is about Rs.10-11/tab of 500mg.
After reading all this I afraid of stone as I was taking it from almost 10 years and it was of calcium carbonate salt.
I also go though internet regarding this and got the same thing.
Now the question is that whether we have to take calcium suplemets that contains calcium citrate mellate or reduce the intake of calcium.
Secondly, is there any affects of different salts of calcium suplements in thals.
Andy, if you have any idea about this please share with us.
Regards
Ritesh
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Hi All
Please do reply if any one has some.idea about that.
Regards
Ritesh
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Yes, the most easily absorbed type of calcium is calcium citrate.
http://healthletter.mayoclinic.com/editorial/editorial.cfm/i/356/t/Building%20blocks%20of%20bone/
Calcium citrate
This type of calcium supplement is the most easily absorbed, is less likely to cause abdominal discomfort and doesn't have to be taken with meals.
There was an interesting study of nurses and kidney stones that showed a decrease in stones among women who had a high calcium intake from diet, while those who took supplements were 20% more likely to develop stones. It was theorized that the timing of when women took the stones contributed to the likelihood of getting a stone. They recommend that calcium supplements only be taken with meals and preferably with meals containing oxalates, as calcium binds with oxalates and then cannot be absorbed and won't pass through the urine. This seems contrary to what we may believe, but the mechanics of it does make sense.
http://www.medicinenet.com/script/main/art.asp?articlekey=1887&page=2
The relationship between dietary calcium and kidney stones is complex. It is known-and this study confirms--that increasing amounts of dietary calcium are associated with fewer kidney stones. It is believed that this occurs because the increased amounts of calcium from food binds to oxalate from food in the intestine, and the complex of calcium and oxalate cannot be absorbed into the body. This reduces the amount of calcium and oxalate that needs to be eliminated from the body in the urine and prevents the formation of calcium/oxalate stones in the kidneys. In fact, calcium supplements have been used successfully to decrease the elimination of oxalate in the urine.
Why then, were calcium supplements associated with more kidney stones in the nurses? The study's investigators hypothesize that the reason is the time at which the nurses took the calcium supplements. The calcium and oxalate in food can bind to each other only if they are present at the same time in the intestine. If calcium supplements are taken with meals containing the most oxalate, everything is fine, and the calcium and oxalate bind. If calcium supplements are taken with meals that contain little or no oxalate, the oxalate doesn't bind to calcium, and the oxalate is absorbed from the intestine and then eliminated in the urine. Furthermore, if calcium supplements are not taken with food, more calcium is absorbed and eliminated in urine. (This would increase the risk for developing stones.) It turns out that 57% of the nurses in the study taking supplements were not taking them with meals, and 24% were taking the supplements only with breakfast, the meal least likely to contain oxalate. Thus, more than three-quarters of the nurses taking calcium supplements may have been absorbing and eliminating more calcium in their urine or were not gaining the benefit of the binding of calcium and oxalate in the intestine.
The study's investigators conclude that a high intake of dietary calcium reduces the risk of kidney stones but supplemental calcium increases the risk. They suggest that the risk of kidney stones among women taking supplemental calcium might be reduced by consuming the supplements with meals, particularly meals which contain the most oxalate-lunch and dinner.
So, to decrease the chances of getting stones, take calcium with meals containing oxalates, and work on getting more dietary calcium and less supplemental calcium.
But beyond calcium, which is not the most important part of the equation, what is your vitamin D level? Is the calcitriol doing the job? This has far more to do with bone strength than calcium. Are you also taking daily zinc, which is proven to strengthen the bones of thals? And are you getting adequate weight bearing exercise to strengthen your bones? And, you should also understand that calcium should not be taken alone. Not only should it be taken with vitamin D, but it should be taken in a bout a 2:1 ratio with magnesium, so if you take 1000 mg calcium, take about 500 mg magnesium. The two minerals work together to control the heartbeat and an imbalance created by taking calcium alone can cause heart palpitations. Magnesium also has great value to thals.
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Thanks Andy,
My Dr. Do not prescribe my any Magnesium or zinc supplement.
My serum calcium level is: 8.90
Vitamin D,25-HYDROXY, SERUM level is: 48.62
T-Score (BMD): -2.4
Z- SCORE(BMD): -1.9
Body weight: 64Kg
Hight: 162cm
BMI: 24.8
For exercise some time I used to walk in the park in the evening but not daily. This is my loop-fall. And I have to make it routine.
Is there any supplement in which calcium, magnesium vit D3 and zinc are present only in one tablet. So that it will be easy to take all supplement in one go.
Regards
Ritesh
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Andy, what vit.-D level do you recomment for thal majors with osteop.? My actual level is 45 and im taking 20.000 u. once a week plus a vit. complex which contains 1.000 u. dayly.
My pharmacist suggest I should work to a level of 75. Isnt it to high? :huh
I also started Super K (vit K2), brand name LifeExtension which supports calcium being absorbed in the bones. Do you know anything about that? Is someone else taking High Vit D or/and vit.K ?
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Hi Nomad
The vitamin D level 45 is inadecuate for bone and overall health.
the normal range starts from >50.
I am also taking 60000iu in 15 days of calcirol.
Erlier my dr. Prescribe me 60000i.u every weekk now after 10 weeks he increases the period to 15 days.
Also I came to know about a supplement WELL CALCIUM COMPLEX.
it contain 250mg of calcium citrate malate
150 mg of magnessium oxide
5 mg Zinc carnosine
50 mcg vitamin k2-7
3.125mcg of vitaminD3
Now my pharmasist advise to take me 2 capsule of above WELL CALCIUM COMPLEX dailly.
So Now, I can take all these nutrient only by taking single tablets
Regards
Ritesh
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You can easily go as high as a level of 100 without issues. I would say an optimum goal is 80.
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The vitamin K-komplex (K1&K2) I do take contains 2000% of the RDA.
Speaking about nutrition, I wonder am I really the only one who takes acetylcysteine (ACC)??
I mean it's one of the best antioxidants for us and it's very safe. Besides it's liver protection...
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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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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
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.
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Thanks Andy,
Thank you very much for guidance.
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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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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
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The amount of vitamin C in the multivitamin is low and does not need to be avoided.
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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
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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/
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].
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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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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.
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Dear Andy,
What is the best natural source for Vitamin E..
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Andy, thank you so much for this helping words!
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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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lokkhi maa
http://ods.od.nih.gov/factsheets/VitaminE-HealthProfessional/
Wheat germ oil
Sunflower oil
Almonds
Safflower oil
Hazelnuts
Peanuts
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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.
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Hi there! I was diagnosed with Beta Thalassemia Minor when I was 13 years old. I have always dealt with fatigue, cold hands and feet, digestive issues, mental fog, and weak brittle finger nails. I have tried so many different supplements, with no success. In the last couple of months I began taking some new supplements and have noticed a huge improvement in the way I feel. One is a ProBiotic, which is truly a lifesaver for my belly! No more stomach upset or hours spent in the bathroom each day. The other is a combination of Vitamin E (Mixed Tocotrienols) and a super powerful antioxidant call Astaxanthin. This supplement is called Amplify A.T. I wil include links below for anyone interested in learning more about these two products in hopes that you too can benefit from them. I can honestly say that I feel so much better on these two products.
ProBiotic Restore Ultra
https://www.advocare.com/151025123/Store/ItemDetail.aspx?itemCode=W3812&id=TS
Amplify A.T.
https://www.advocare.com/151025123/Store/ItemDetail.aspx?itemCode=W3031&id=D
Andy: I would love your input on these products.
Thank you!
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Hi Michelle,
I recommend vitamin E to everyone. Astaxanthin is a powerful antioxidant and gets very high recommendations. I would say you are on a good course with these supplements. If you aren't already taking it, I would suggest adding vitamin D to the mix. If you bruise easily, add a vitamin C supplement, as well.
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Hi Andy, I've been a member on this forum for awhile but I've just started posting more for some advice. I was diagnosed with minor thal when I was 17, now I'm 19. 2 years ago, my hemeatologist recommended me to take geritol. But I feel terrible any time I take any sort of medication. He recomended me to take geritol because the iron dosage in it is low. I'm always anemic and my iron level is usually under 10. I've been suffering from hair loss for the past 2 years and nothing has helped. I've lost so much hair that it makes me depressed. My ferriting level is low (24), and it's supposed to be over 70 to stop hair loss. I'm not sure how much iron I'm supposed to take because I don't want to overdose. My sister was diagnosed with hypothyroidism last week and I feel like I might have it too, except I don't gain any weight. I've been taking my temperature under the armpit and it's usually 95-96 f. Should I get my thyroid tested? And what should I do to increase my iron level? I've been a vegetarian for my whole life.
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mskk1354,
Your Hb and ferritin are low enough to suspect that iron deficiency is also present. Below 10 is lower than most minors experience. Do get your thyroid tested, as it may be part of your problem.
Please take a look at this link http://www.thalassemiapatientsandfriends.com/index.php/topic,4890.0.html
My first suggestion would be that you start taking at least 2 mg of L-methylfolate daily. I would also suggest that you take vitamin D. B complex would also be of help, as well as a sublingual B-12 supplement. You may need some iron, but it has to be in a form that does not upset or bloat your stomach. If Geritol does bother you, see if you can find Spatone 100% Natural Iron Supplement, http://smile.amazon.com/gp/product/B0019M7OCA?keywords=iron%20water&qid=1455391904&ref_=sr_1_4&sr=8-4
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Hi Andy, Thank you very much for the advice. I will make sure that I take all of the supplements that you've recommended me. My doctor did suggest me to take sublingual b-12 and I do have 3 bottles of it.
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I am using L-Carnitine 500 mg (P#3840) currently it out of stock
Another option is L- Carnitine 500mg (P#016830) which is available
Please advice me whether both the products are the same or different?
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Dharmesh,
I guess its just the difference in number of tablets, thats it.
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Waleed,
Yes the content looks the same but the product # 1684 was also having qty option 120 tabs which is currently now removed from there.
And i want to be sure before placing the order.
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Yeah, it's all the same product.
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Thanks Andy & Waleed
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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
Oho, I too should take calcium citrate powder with a vit D tablet. Does anyone else takes powder? I have to measure it myself. I am suppose to take it two times a day. I also take Ferriprox three times a day. Does anyone has an idea when to take calcium citrate?
I had no idea one can take it with water. I also mix it through yoghurt. But since I have not always yoghurt with me I rarely take it :blush [In case you wonder: I receive a box with 500 mg of the powder. There are no instructions besides that I should take it twice a day. I cannot even calculate myself if I really should take 2x X gr a day according to a formule.]
So my question is: How and when would you take calcium citrate powder two times a day when you take three times a day Ferriprox??? (And when you are not home)
(I am baffled that you should take calcium citrate (powder?) with water!!)
I take vit D with calcium citrate powder. Should I add something else?
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You should take the calcium citrate with meals. I suggest adding magnesium if you're not already taking it.
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You should take the calcium citrate with meals. I suggest adding magnesium if you're not already taking it.
Hi Andy, thank you for your advice. I do not take magnesium with it. Unfortunately I had to quit again as I became again very sick when I took it a couple of days straight. I felt very unwell and I could only lay down flat. I have make the decision to quit it. I experience bad side effects everytime I follow the instructures. I must take 3 grams two times a day. If you have a suggestion or a solution, anyone who reads this, then please share it with me.
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http://www.npr.org/sections/health-shots/2013/12/17/251955878/the-case-against-multivitamins-grows-stronger
What is called balance?
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That was one of the worst articles I have ever read. It is so easy to find dozens of studies done right at Johns Hopkins demonstrating the effectiveness of various supplements, yet you can also find a professor who will say they're worthless. My own life tells a story of the importance of good nutrition. One thing I do listen to is my own body. I've learned to ignore the so called studies that conflict with dozens of studies done at the same institutions.
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Dori,
Why such a high dose of calcium? 3 grams is quite a bit. For someone your size, a dose of calcium of 750-1000 mg daily would be plenty.
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Dori,
Why such a high dose of calcium? 3 grams is quite a bit. For someone your size, a dose of calcium of 750-1000 mg daily would be plenty.
Thank you Andy!! It was my frist thought that the dose is set too high. I am prescribe two times three grams a day. = 6 gr. I will try to take 1 mg every other day. My cooking weight scale can only measure grams. Does someone know a thing to measure mg with?
I have a box with 500 grams powder. There are pills but these are not covered by health insurance. it is too expensive to pay for it myself.
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Dori,
It is advised that magnesium be also taken with calcium. The dosage should be roughly half of the calcium dosage.
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Dore,
Calcium citrate is a fairly common supplement. Can you find a less expensive alternative? The powder I saw on Amazon directed to take one teaspoon daily. It was also very inexpensive.
http://www.amazon.com/NOW-Foods-Calcium-Citrate-Powder/dp/B0006ZF9NC
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Dore,
Calcium citrate is a fairly common supplement. Can you find a less expensive alternative? The powder I saw on Amazon directed to take one teaspoon daily. It was also very inexpensive.
http://www.amazon.com/NOW-Foods-Calcium-Citrate-Powder/dp/B0006ZF9NC
Hi Andy, thank you for your help. I made a mistake in my last post. I forgot one must take it with water. So the powder I receive from my hematologist will be fine (it is covered by my insurance (the pills will not be covered). I talked about the pills because these all contain the same amount of calcium. But I found a good working scale for mg's.
So I should take 1 calcium citras, 1/2 magnesium and 800IU vitamin D. {I will take calcium citras and magnesium only every other day as I do not want to experience these side effects again).
I will also start another therapy against osteoporosis. It is called Zolendronaat (Aclasta and Zometa are other names) it is zoledronic acid. Is there anything I should know about that? Is there some pre treatment before it is started?
Please let me share something else. I had a hypertransfusion (from 7.8 gl/dl) to get me high and steady again: I feel so very great and energized! (I had been for months in the 7.8 zone as pre tx level - keep in mind I have PK Deficiency thus there exist not any protocol and I was stubborn) So please keep your hb high and steady. It is probably better for your bones as well. :wink
I had actually declared 2016 the year of osteoporosis therapy.
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Dore,
The one thing I would suggest is raising the vitamin D dose. 800 is quite low. 2000 IU daily might be more effective for you. Take the calcium in magnesium in a 2:1 ratio if possible. Add zinc, too if you don't already take it. It is very important for the bones and the one thing recommended proven to help build bones.
The bone drugs seem to work well for some people. Some can't handle the side effects, while some do fine.
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I felt very unwell and I could only lay down flat.
The same happens with me and it's since so many years :( because of damn weakness, low hb and breathless.
I too do the same.
Same pinch
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Dori,
For taking precise dosage of powder, u can use spoon used by sheaf as it comes in so many size as sheaf also need to use cooking iteams in precise quantity. You can find some cooking spoon at Amazon.
Hope you will find right one
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Thank you all for your help. Now I really must restart this therapy.
I really hope I will not experience side effects. Which side effects are there? I wrongly thought jaw problems were not listed as side effects but apparently they are. I will start somewhere during summer and I will receive it with big breaks in between.
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Dori, be sure you have checked and managed all you teeth problems before starting Aclasta or Zometa. One should not have kind of big dentist "actions" like teeth extraction for 3 months bevore and after the infusion. This to avoid necrosis in the jaw bone...
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Is there any other way of improving bone health other than taking Zoledronic Acid...before starting it.
Perhaps it was Canadian Family who managed to get their daughters T2/Z scores higher with alternative med/supplements. :heartpink
Can't quite remember.
But is there a way.
:heartred
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Hi Emby,
Calcium supplements with vitamin D are helpful. The best way to improve the bone health is to exercise that put pressure on the bones, e.g. light weight training, jumping rope. For more details, please follow the link
https://consumer.healthday.com/encyclopedia/exercise-and-fitness-18/misc-health-news-265/exercise-and-osteoporosis-how-to-strengthen-weak-bones-647325.html
Hope this helps.
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In addition to calcium, magnesium and high doses of D, make sure they are also getting zinc daily. Recent research has also shown that B-12 is essential for bone growth and strength. Thals need to be near the high end of normal for B-12. Do not settle for within range. Get the level up close to 900. The exercise route mentioned by CF has real value.
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Will 1 ml of a good multivitamin be good for a 16 month old baby?
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Can you post a link to the multi?
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I just started with my Zometa treatment. I am one of the few (ofcourse) who get full flu like symptoms as fever and pain. Every day I move, bend and stretch better. I will receive this transfusiin once a year. The leaflet says these side effects only occur with the first dose. I am 3 days post infusion. The pain was / is very nasty. Now I will continue with diet and some supplements. Is biking also good fod your bones? I find rope jumping too difficult.
By the way I have a check up by the denist next week. Is that Okay?
And how many take Zometa? Anyone else here who is doing this treatment??
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Biking is very good for your bones and a low impact exercise.
Dentist is okay. Tell him you're taking the bone drug, as one side effect is that it can harm the jaw, so the dentist should be aware to look for any signs of changes in your jaw over time.
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Hi Dori,
Just sharing a thought here. Like you Little Miss A also find it difficult to jump rope. The idea is not to actually jump over the rope, you can simply jump up and down without rope. It is simply a method to put pressure on your bones specially lower lumber bones supporting your back.
Little Miss A has been jumping up and down for last two years (300 times a day) and her results are amazing.
Hope this helps.
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Dori , it took me about 10 days to recover from flu like symptoms but after that I didn't have to take any medicine for lower back pain for about half a year...
Also sports was kind of easy going...
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Dori , it took me about 10 days to recover from flu like symptoms but after that I didn't have to take any medicine for lower back pain for about half a year...
Also sports was kind of easy going...
Great to hear Nomad. Unfortunately this is not my expierence. We now ruled everythimg bad out and adjusted my treatment plan. It is probable not Zometa as it started alreasy before that.
I will try to just simple jump up and down as I only read your message now.
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Dori , do you take vitamin K along with vitamin D? It's a good booster for bone metabolism.
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Dori , do you take vitamin K along with vitamin D? It's a good booster for bone metabolism.
No, I do not. Vot K is in the cheese I eat dialy. What is a natural source of vit E? How much is recommend?
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Supplements with both vitamin D and vitamin K are easy to find. I suggest a supplement for vitamin E. It's found in many foods, but not in the quantity needed when fighting oxidation. I suggest 400 Iu daily. The product will be labeled d-alpha tocopherol. not dl, as dl is the synthetic form which should not be used.
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How much of Vit B6 will be enough per day? Will too much of Vit B6 cause nerve damage in beta thal patients?
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Hi jsbhavsar
If you are not having deficiency in vitamin B6, the amount found in a good multivitamin will be enough for you.
Generally speaking you shouldn't be deficient or exceeding the normal levels in any vitamin or mineral as each case has its drawbacks
Manal
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Hello Andy sir,
My son Sumit Pawar 9 years old from India under the treatment of Dr.Vijay Ramanan Pune since 2.6 years.He is Thallassemia Intermedia.Dr.Ramanan prescribed some medicines as follows.
1) Wheat grass powder(Globsure powder)
2) Riboria 500mg(Hydroxyurea)
3) Thalide 50mg(Thaladomide)
4) Loprin 75 mg
5)C.C2B Plus
6)C.Gluder
7)Tab. Calceome
He never required blood transfusion,his Hb remains between 10.5 - 11.5 in every month and overall health is good
My question is, there is any side effect above medicines for long time consuption on kidney and other organs in the body Please repply, Thank you,
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All medicines have some side effects, but the lower doses used in this therapy have not shown any long term serious side effects in users. From the reports I have received about this therapy, I would say that any serious side effects are observed within the first couple months and if this therapy does not suit that patient, it is discontinued. Your child is long past this stage. Keep in mind that the transfusion and chelation method of treatment also has side effects, and the side effects of chelation drugs can even be dangerous to some patients, so one needs to weigh this against the side effects of the therapy.
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Thank you very much sir, for your valuable suggestions
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Hi Andy,
Thanks so much for the information you provided about the list of Vitamin and Mineral Supplementation for Thalassemia patients! I was already taking some of these, but am now taking closer to the full list. It has made a big difference, finally I can now get through a hectic work day without feeling tired or lethargic as a result :)
I have also started to use organic Wheatgrass powder in a juice that I make for myself and drink daily, which is helpful as well.
PS - I am so grateful that this website exists! It's so good to have a community of Thal patients who are going through similar symptoms to me, where we can share knowledge and support one another :) Keep up the great work!
Cheers, Dalia
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Dalia,
I am happy the recommendations are helping. It's tough to get doctors to pay attention to the additional nutritional needs caused by thalassemia, so much of my focus all along has been to help provide the missing information. much of it gathered from the experiences of people like yourself.
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Hi Andy,
Thanks so much for your reply, and I couldn’t agree more! In my life experience, all doctors ever told me to do for my thalassemia minor was to ‘take iron supplements’ and ‘eat red meat’. I have never been iron deficient, so this advice was actually harmful for me.
I do not blame the doctors themselves though, more their training. It’s a real gap that doctors are not taught enough about nutrition and the important of diet for maintaining good health as part of their medical training. This might help to explain why they don’t (or can’t) offer much useful nutritional advice to patients, especially thalassemia ones!
All the information I’ve gained about the additional nutritional needs caused by thalassemia has either come from this website, doing my own research or speaking to ‘alternative’ health practitioners such as acupuncturists and yoga instructors. That’s why this website and the missing information you provide is so vital!
Thanks so much again, and keep up the great work Andy!
Cheers, Dalia
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Hello Andy,
I am a 40 yr old male with beta thalassemia major.
I have been taking zinc for years. But there are so many different types of zinc so I’ve never stuck with one type.
What form of zinc do you prefer?
Examples are: picolinate, gluconate, orotate, citrate, etc etc
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I recently discovered Klaire Labs and have been taking MULTITHERA® 1 CAPSULE FORMULA PLUS K - Comprehensive micronutrient essentials, iron-free. I wanted to share this so it can help members of this community. I have beta thalassemia minor and this multivitamin has helped with dizziness, fatigue, and restless leg. It contains high quality ingredients in the dosage that Andy has suggested in his thread. Full disclosure: I am not paid by this company to make any recommendations. I am simply sharing what I have used and what has helped me. Prior to this supplement, I was getting the same nutrients from several different bottles but this multivitamin made life a lot easier. The minor downside is that you have to take 6 capsules to get the full nutritional value and there is a slight odor from the capsules. However, it is only a slight inconvenience in my opinion. I prefer this product because it is easy for me to take 2 capsules 3 times a day. The product is cost effective compared to purchasing a bunch of separate bottles which end up costing a lot more and reordering becomes another hassle.
Andy, I would appreciate if you would take a look at the nutritional content and provide feedback.
Thanks!
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restless 923,
I take a product that contains a zinc amino acid chelate complex, along with a copper amino acid chelate complex. It is very effective based on my tests over the past year. The one I use is made by Solaray. When taking copper or zinc, the other mineral should also be taken, so that neither one gets out of balance.
This is what I use. It can be found at various supplement sellers. https://solaray.com/products/zinc-copper
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Manjit,
The product looks pretty complete. I think a bit more zinc might help. I like to take 50 mg daily and my zinc levels have been very good, which is important for immune system health. I also take a much higher dose of magnesium nightly, but I need a high dose to calm restless legs.
Overall, it's a solid product.
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restless 923,
I take a product that contains a zinc amino acid chelate complex, along with a copper amino acid chelate complex. It is very effective based on my tests over the past year. The one I use is made by Solaray. When taking copper or zinc, the other mineral should also be taken, so that neither one gets out of balance.
This is what I use. It can be found at various supplement sellers. https://solaray.com/products/zinc-copper
Thank you so much for your help.
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Andy,
Thank you for reviewing. Do you know if there is any connection between Thal minor and chronic upper respiratory system infection/disease? I find that my airways are always congested and it seems to get better when I take liquid fish oil or vitamin C but the relief is temporary. Recently, I started taking creatine and I immediately noticed an improvement in my ability to breathe fully. However, the relief is again temporary. I have not yet visited an ENT specialist but want to know if there is a connection between Thal and upper respiratory infection/disease.
Thank you for all you do.
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I have not heard of any specific connection between thal and respiratory issues. I would suggest being tested for asthma.
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Hi, Andy
Thank you for accepting me into this blissful forum.
I'm from Indonesia and have a 2.5 years old daughter diagnosed with HBE/Beta Thal. I am not sure if my daughter is classified as major or intermedia because so many different perspectives from the doctor that I met.
I create a simple medical journey for my daughter to monitor her treatment, I want to know your opinion about this: https://docs.google.com/spreadsheets/d/1hLNI02pOQC7gzhOgfbniey8KUgJkuh5NqZEhFM7xoHo/edit?usp=sharing
So far, my daughter is very active, with no significant problems except her weight is stagnant. The doctor gave us the vitamin as follows:
Folic Acid : 2 x 1 mg (Generic)
Vit. E : 2 x 100 mg (150 IU) (Generic)
Vit. D3 : 1 x 800 IU
Also, I give her additional dietary for her meal such as:
Tea
Honey
Iron-free multivitamin and mineral
Fruit: Peer, Apple, Strawberry
Wheatgrass Powder : 2 x 1/2 teaspoon
Wheatgrass Juice : 2 x 2 tablespoon
The wheatgrass juice is homemade and self-planted.
I want to ask something:
1. I want to change the folic acid and vitamin E because there is a generic (non-branded) vitamin from the pharmacy as prescribed by a doctor. That is helpful?
2. What is the additional vitamin & supplement and the dosage that is suitable for my daughter at her age? Right now her weight is 9.5kg slightly lower than her age.
Thank you
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L-methylfolate is preferred over folic acid, as it is processed better by the liver. It can be very effective. I take it daily to combat fatigue from my bad thyroid and it works well. It also keeps my Hb quite high. Only natural vitamin E should be used. it will be marked D-alpha tocopherol, not Dl-tocopherol. Dl is the synthetic form and is made from industrial waste products.
Keep giving your child good wholesome foods that are nutritious.
Her status is most likely intermedia.