Thalassemia Patients and Friends
Discussion Forums => Thalassemia Minor => Topic started by: Sharmin on October 15, 2008, 12:29:18 AM
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Andy,
When I take this supplement for a few months I feel really energized and well. Would this be a good supplement for our thal minor friends to be taking?
http://www.yournaturalvitaminstore.com/products/l0046.html
Sharmin
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Sharmin,
The company does not provide any information on exact ingredients or nutritional content. Most multi-vitamins list the amounts of each vitamin and mineral on the label. Because of this, I can't really make any recommendation one way or another.
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Hi Andy, this supplement was previously called anti-aging - it is now called antioxidant multivitamin. Below are the ingredients and content. The indication is to take 2 caps a day.
TOTAL ONE THE COMPLETE ANTI-AGING MULTIVITAMIN & MINERAL FROM SWISS HERBAL.
This revolutionary new time release multivitamin and mineral formulation provides the optimum daily balance of nutrients to support overall health. Enhanced with Alpha Lipoic Acid, Lutein, Zeaxanthin, Lycopene, Green tea, Grape seed, Omega-3 and more. This full spectrum blend is ideal for those wanting a multi that works to boost immunity, fight degenerative disease, protect vision, and help maintain healthy youthful skin. [CAPLET]
EACH 2 CAPLETS CONTAIN:
Vitamins:
Beta Carotene (provitamin A) 3000IU
Vitamin A 4000IU
Vitamin D 400IU
Vitamin E (D'Alpha Tocopheryl Succinate) 150IU
Vitamin C 150mg
Vitamin B1 (Thiamine Hydrochloride) 50mg
Vitamin B2 (Riboflavin) 50mg
Vitamin B6 (Pyridoxine Hydrochloride) 50mcg
Niacinamide 50mg
Folic acid 1.0mg
D'Pantothenic Acid (Calcium D'Pantothenate) 50mg
100mcg
Minerals (Elemental):
Calcium (HVP Chelate, Citrate) 150mg
Magnesium (HVP Chelate, Oxide) 75mg
Potassium (Chloride) 12mg
Manganese (HVP Chelate) 2mg
Zinc (HVP Chelate) 10mg
Copper (HVP Chelate) 1mg
Iodine (kelp) 0.15mg
Selenium (HVP Chelate) 75mcg
Chromium (HVP Chelate) 75mcg
Molybdenum (HVP Chelate) 25mcg
Non-medicinal Ingredients:
Alpha Lipoic Acid 100mg
Lutein 400mcg
Zeaxanthin 17.6mcg
Lycopene 5mg
Omega 3 Fatty Acids (Flax seed oil) 150mg
Grape seed extract (95% Proanthocyanidins) 25mg
Green Tea Extract (50% Polyphenols) 10mg
Sulforaphane (Broccoli extract) 100mcg
N-acetyl Cysteine 200mg
Silica 1mg
Bioflavonoid complex 50mg
Lecithin 150mg
Para amino benzoic acid 25mg
Glutamic Acid 25mg
Also contains: Magnesium stearate, Microcrystalline cellulose.
FORMAT:
50 caplets
IMPORTANT INFORMATION:
This product contains no added: Artificial preservatives, Colour, Wheat or Yeast.
RELATED ARTICLES:
Aging
Energy
Immune System Health
Articles by a Naturopathic doctor.
HIGHLIGHTS:
Complete Anti-Aging Multivitamin & Mineral
With added ALA, Lutein, & Lycopene and Flax seed oil
Designed to release over an 8 hour period
Supports overall health and helps prevent premature aging
Idea for those over 40 years of age
SUGGESTED USE:
Adults: Take two caplets once a day with or without food.
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here is a more updated version, i don't know if it is any different.
Swiss Natural Sources® Timed Release products are formulated to gradually release ingredients over 8 hours.
No artificial preservatives, colours, dairy or wheat.
Each caplet contains: Medicinal ingredients
Beta Carotene (Provitamin A)
1500 I.U.
Vitamin A (Acetate)
2000 I.U.
Vitamin D3 (Cholecalciferol)
200 I.U.
Vitamin E (d-alpha tocopheryl acid succinate)
75 I.U.
Vitamin C (Ascorbic Acid)
75 mg
Vitamin B1 (Thiamine Hydrochloride)
25 mg
Vitamin B2 (Riboflavin)
25 mg
Vitamin B6 (Pyridoxine Hydrochloride)
25 mg
Vitamin B12 (Cyanocobalamin)
50 mcg
Niacinamide
25 mg
Biotin
25 mcg
Folic Acid
500 mcg
Pantothenic Acid (Calcium d-Pantothenate)
25 mg
Calcium (HVP* Chelate, Citrate)
75 mg
Magnesium (HVP* Chelate, Oxide)
37.5 mg
Potassium (Chloride)
6 mg
Manganese (HVP* Chelate)
1 mg
Zinc (HVP* Chelate)
5 mg
Copper (HVP* Chelate)
0.5 mg
Iodine (Kelp)
75 mcg
Selenium (HVP* Chelate)
37.5 mcg
Chromium (HVP* Chelate)
37.5 mcg
Molybdenum (HVP* Chelate)
12.5 mcg
Alpha Lipoic Acid
50 mg
Lycopene (Lycopersicon esculentum)
25 mcg
Flax Seed Powder (Linum usitatissimum)
75 mg
Grape Seed 120:1 Extract 120 (95% Proanthocyanidins) (Vitis vinifera L.)
12.5 mg
Green Tea Extract (50% Polyphenols) (Camellia sinensis)
5 mg
Sulforaphane (Broccoli Extract)
50 mcg
N-acetyl Cysteine
50 mg
Para Amino Benzoic Acid
12.5 mg
Bioflavonoid Complex (Citrus limon, Citrus sinensis)
25 mg
L-Glutamic Acid 12.5 mg
Lutein (Tagetes erecta) 200 mcg
Zeaxanthin (Tagetes erecta) 8.8 mcg
Silica (Colloidal Silicon Dioxide) 0.5 mg
Lecithin (Glycine max) 75 mg
Non-medicinal ingredients: hypromellose, microcrystalline cellulose, magnesium stearate
*HVP: Hydrolyzed Vegetable Protein
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Hi Sharmin,
It looks like a good product and I even think majors could use it because it only has 150 mg vitamin C per 2 caps. Most of the doctors recommend a multi vitamin for thals in addition to some extra supplements, such as added vitamins D & E, because the multis don't contain enough of certain vitamins. Multis are a good supplement but don't forget to add the individual vitamins and minerals as needed.
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Thanks for checking that Andy, you are right - I had a vit D deficiency even though I was taking a multi. I think the majors need even more.
Andy, my son was also vit D deficient, do you know how much of a dose he should take (he is 27kg).
Sharmin
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Wow,that sounds like an amazing product,covering like everything and excluding iron :) .
Zaini.
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I looked here on the net in Holland to buy them but these ones i couldn't find
Maria :huh
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Hi Maria & Zaini,
I was actually thinking of you thal minors like you when I posted this. In Oakland the doctor came in with a bottle of Centrum Silver and said all thals should be on it. I thought that it would be well worth it to research another product (Such as Swiss Total One antiox) listed above - to give thal minors (and even majors) another alternative. We can add a few essentials to this and it may be a good thing.
If the exact brands are not available where you are maybe you can use this and the ingredients of the Centrum silver as a guide to select a vitamin from a respectable company that is available where you are. I will keep looking to see what else I can find in the mean time.
Sharmin
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hi guys i found this 1 is it the one your talking about
http://www.totalhealthvitamins.net/product/2844?/r=pricegrabber
we also have the problem with customs but I dont know if this also applies to supplements
maria
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Hi Maria,
This is a different supplement than the one I discussed, but if the ingredients are the same it may be just as good.
Sharmin
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Has anyone been taking the Swiss total one? Any notable changes?
Sharmin
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Andy, my son was also vit D deficient, do you know how much of a dose he should take (he is 27kg).
Sharmin
It's been quite a while since this question was posted, but I am certain that even now this answer can help - after all the vitamin D supplementation tends to last so long.
This story should be told in another thread (how I come to realize that all), because it is so long, but for now only the important things.
Firstly I would like to tell you that according to research, there is no danger when taking vitamin D in doses like 10000 iu. This is described here:
http://www.ajcn.org/cgi/content/full/69/5/842
However, this is based on an adult that weighs for example 60-70 kg, so in the case of a child this should be scaled down accordingly to child's weight.
Secondly, if the deficiency is very severe (based on the blood test) it is allowed to use doses even greater than 10000 iu (for adults). All that has to be done is periodic calcium test in blood and in 24h urine collection, to see if too much calcium is not absorbed.
Your target vitamin D blood level is at least 30 ng/mL or better 40 ng/mL.
Dosage should be adjusted accordingly to the initial and target vitamin D level. And the supplementetion should be done fast, because you don't want to wait forever for the results.
For example first doctor I went to, gave me 500 iu, and it would take me 5 years to reach 45 ng/mL - ridiculous! The next doctor gave me 1000 iu - also ridiculous - 2,5 years to supplement fully.
Now I take 15000-20000 iu per day, but I weigh 120 kg (however rather not very obese, but very tall, and obese people should take higher dosages for the same effect) and this dosage works for me. I have still 2 months to go with the supplementation in order to achieve 45 ng/mL.
My initial dosage calculation was based on this article, then I calculated dosage according to repeated vitamin D blood tests, and then I increased the dosage to 20000 iu to speed things up. Couldn't wait any longer, because of the health issues caused by this deficiency.
http://www.sciencenews.org/view/generic/id/6123/title/Food_for_Thought__Understanding_Vitamin_D_Deficiency
But the problem can be remedied with a vitamin D supplement, he adds.
Hollis gives the example of a student who worked in his lab last fall.
Owing to her heavily pigmented skin and obesity, he worried she might
be vitamin D deficient and recommended she have her blood tested for
the vitamin. She did, and the analysis showed that her blood had only
about 7 ng/ml, which is "profoundly deficient," says Hollis. However,
after the student took 4,000 IU of vitamin D per day for 3 months,
Hollis says, "we finally got her blood levels into the mid-30s."
So, summing up. The dosage depends on how fast you need to have your vitamin D balanced, and how many and how often you are willing to take precautionary measures (calcium tests).
B.
PS. What made me really furious is that in this hospital where the test is physically done and the blood "flows" there from the whole Poland, they do not have the correct normal range for vitamin D - they have 11 - 54 ng/mL and this is so wrong because it should be 30 - 54 ng/mL.
All deficient patients with 11-30 ng/mL values are told that they are within normal range, and they are severy deficient.
The lab know about the incorrect normal range, but they say that the doctor will know, how to apply the correct range...
Yeah, right! Even the doctors from this hospital use this incorrect normal range in scientific papers.
So, the bootom line is that sometimes you can't even trust the normal ranges from very renowned laboratory...
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Bigg,
Thank you kindly for taking the time to answer and my question and for the in depth explanation I really appreciate it. Since the time that I posted this question I have begun to give my son Osteocare but I will assess to see if he is getting enough. Thank you again:)
Sharmin :hugfriend
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Although in the past it has been thought that high doses of vitamin D should be avoided, research in recent years has shown that this thinking is incorrect. In addition, the minimum daily dosage needs serious revision. I recently doubled my daily dose to 2000 IU and it has made a difference in how tired I've been feeling. I may still need to go higher, but it is helping. In summer, when I can get sunlight, I don't even take supplemental D, but in winter I feel terrible without it and get depressed constantly if I don't take extra D. An interesting study was done in the UAE, where in spite of more than adequate sunlight, the vast majority of women were found to be deficient in vitamin D. I have mentioned this study before in a post at
http://www.thalassemiapatientsandfriends.com/index.php?topic=1184.msg9248#msg9248
Middle Eastern women may have vitamin D deficiency[/b]
Mon Jun 25, 2007 2:22PM EDT
By David Douglas
NEW YORK (Reuters Health) - In certain Middle Eastern and other countries where conservative dress curtails exposure to sunlight, high levels of vitamin D supplementation may be needed to raise serum levels sufficiently in women, investigators report.
"When sunlight exposure -- the main source for vitamin D in humans -- is limited," Dr. Hussein F. Saadi told Reuters Health, "much higher dietary intake of vitamin D is needed than currently recommended," especially for women who are breast-feeding.
As reported in the June issue of the American Journal of Clinical Nutrition, Saadi and colleagues at the United Arab Emirates University, Al Ain, studied vitamin D levels in 90 women who were breastfeeding and 88 women who had never given birth. Many dressed to cover their whole bodies, including their hands and faces, while outside of their homes.
Only two of the women, one in each group, were not vitamin D deficient at study. All the women were randomly assigned to receive 2000 IU of vitamin D2 daily or 60,000 IU in one dose each month. The investigators note that vitamin D2 is the only high-dose calciferol available in the UAE.
Althoughboth monthly and daily dosing significantly and safely increased vitamin D levels, only 21 of the 71 women (30 percent) who completed the 3-month study reached the recommended blood levels.
Vitamin D2 doses "as high as 2000 IU per day were marginally effective in ensuring adequate vitamin D status," Saadi commented. He and his colleagues suggest that "if the more potent vitamin D3 preparation is not available, higher doses of vitamin D2 than currently studied may be needed."
Dr. Saadi added, "When compliance or adherence with a daily regimen of vitamin D supplementation is an issue, monthly dosing appears to be a safe and effective alternative in ensuring adequate vitamin D status in subjects at risk for vitamin D deficiency."
SOURCE: American Journal of Clinical Nutrition, June 2007.
Please note that a 60,000 IU dose once per month was proven safe. I don't think toxicity is really an issue and it has to be remembered that thalassemics are often severely deficient in several vitamins and minerals.
Bigg, I'm happy to hear you've found something that gives some help. It's not easy to overcome genetic problems but much can be done to optimize regardless of what nature has given you. Keep us posted on what you find that does help.
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Although in the past it has been thought that high doses of vitamin D should be avoided,
It was assumed that taking cholecalciferol (vit. D3, prohormone) may be as dangerous as taking calcitriol (the active hormonal form), and that assumption was not based on any scientific proof. So if someone is still afraid of taking cholecalciferol, he/she is afraid of taking calcitriol (may be dangerous), not cholecalciferol (almost completely safe).
the UAE, where in spite of more than adequate sunlight, the vast majority of women were found to be deficient in vitamin D.
My father who is retired and spent the whole summer outdoors in the sun, has also vit. D deficiency, quite severe. So this all shows that nobody is immune to this deficiency. This is because we spent most of our time indoors, wear long sleeves, and so on. And this deficiency adds to all the problems you may already have.
Please note that a 60,000 IU dose once per month was proven safe. I don't think toxicity is really an issue and it has to be remembered that thalassemics are often severely deficient in several vitamins and minerals.
It is safe statistically, but as usual (and I am repeating myself here) the statistical analysis lies.
The person taking vitamin D, especially with severe deficiency may suffer from secondary parathyroidism and hypercalcemia. Although life threatening hypercalcemia is very very very rare in this case, we'd like to be extra cautious here. You should ask your doctor to have your calcium levels tested.
Bigg, I'm happy to hear you've found something that gives some help. It's not easy to overcome genetic problems but much can be done to optimize regardless of what nature has given you. Keep us posted on what you find that does help.
As Andy and probably some of you remember, I was (supposedly) diagnosed with genetically induced myopathy. Now after vit. D supplementation it seems that all of the symptoms are gone, and even if I have this myopathy, it does not cause any problems.
Vit. D deficiency itself can cause muscle myopathy:
http://cat.inist.fr/?aModele=afficheN&cpsidt=1340783
Now the problem is the severe mucous membrane dryness (due to vitamin D deficiency and hormone imbalance), catching colds (because of nose and throat dryness) and recurrent shingles (due to colds and thus weaker immune system and direct influence of vitamin D deficiency on immune system).
*Vitamin D induces antimicrobial protein Cathelicidin in skin (and other tissues):
http://www.medinewsdirect.com/?p=594
*Vitamin D has immunomodulatory effect:
http://cat.inist.fr/?aModele=afficheN&cpsidt=13771750
*Vitamin D affects chondrocytes in joints:
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1635166
And has anti-inflamatory effect in many diseases, for example in MS.
Those articles above are only examples for the given subject, but there are many many more similar cases if you only look for them.
Because I am not vitamin D deficient anymore, now I have to deal with hormone imbalance, which was caused mainly by stress (muscle, joint pain, not feeling well) and I don't know exactly how to go about it.
I have hyperprolactinemia (prolactin is one of the stress hormones) - as high as 15 times above the normal range, and it's not a tumor prolactinoma.
Excess of other stress hormones (adrenalin, cortisol, endogenous opioids, DHEA) is very likely too, but difficult to measure.
One of the cortisol blood test results was out of normal range on the high side, but the next test was within normal range. The doctor said it's nothing (why would he order another test if one test said yes and the other said no... it's easier just to get rid of me).
Catecholamines:
http://www.nlm.nih.gov/medlineplus/ency/article/003561.htm
were within normal range, but on the high end of the range and it was one of better (without pain) days when I did the test.
I was also thinking of doing some kind of imaging scans of my adrenal glands. But this will rather not give the expected information.
There are also tests when one regulatory hormone is injected to see if the other is abnormally out of range - however such tests are not done here.
Of course right now the pain is minimal, so it seems all these problems could self-regulate. However it would be good to boost the process with apropriate drugs...
I used to take Dostinex which inhibits prolactin secretion and I will be taking it again soon.
But what about the other hormones, is it possible to block them somehow?
What I need now is a good pain management method that would get rid of these harmful hormones, but I am afraid that doctors of this kind here treat their patients only with opioids (and I don't need these at all now) and with antidepressants (or other drugs of this kind - how do you call them; theoretically don't need these either - not depressed, but some of them may alleviate the physical stress; I wonder which ones; the problem is that some of them can also cause hyperprolactinemia, paroxetine being one example, and I don't want that). It is very easy to get a prescription for an antidepressant without doctor even digging deeper into your medical problems. So everytime I go to the doctor, it is suggested that I should take one of these drugs...
So my thalassemia minor was supposed to be treated in this way (and good multivitamin did the trick), my muscle myopathy (vit. D supplementation did the trick) and joint problems (it finally showed that laparoscopic operation was necessary).
I need these doctors to adress the real issue here, not to just get rid of me as fast as possible with some usually wrong recommendations.
If anybody has an idea how to deal with, or had problems with these hormones, please speak up...
I also wonder, maybe there is yet another reason of my weak immune system (and dry throat)?
http://www.merck.com/mmpe/sec13/ch164/ch164f.html
says that candida albicans may cause immunodeficiencies. And I definetely have candida albicans overgrowth - it was grown in a cultured cheek swab (I hope that's the name) and I have different other symptoms. I'm currently taking Nystatin.
OK, these are the problems to solve - although there was a great progress, there are still many to solve. Any opinion appreciated.
B.
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Bigg,
Check the report at http://mercola.fileburst.com/PDF/Candida-Special-Report.pdf for information about candida infections and ideas on how to treat it. I had the problem some years back (yes, men also get yeast infections) and I had to avoid all foods containing yeast or molds. This included all bread with yeast and things like peanuts. In my case, I finally got relief by having my slow thyroid treated. I don't know what the connection was.
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(yes, men also get yeast infections)
In my case candida had an easy task as the doctors told me not to eat fats (due to this genetic myopathy), which lead to eating carbs. So it seems this had to happen.
This included all bread with yeast and things like peanuts.
I also switched to this kind of bread. But once it was unavailabe and I bought the yeast type.
Effect: stomach ache for the whole night, recovering from this incident for one week.
This dr Mercola says that there can be hormonal problems caused by candida overgrowth, including cortisol problems. Interesting.
B.
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Hi.
I don't think the Alpha lipoic Acid and the NAC content are good ideas for thals,because Alpha lipoic Acid is a potent copper chelator,whereas NAC combines with zinc and copper and can remove them from blood circulation. According to an abstract,the blood levels of copper in both plasma and erythrocytes were higher in the patients (children) with thalassemia than in the controls.This means,we need more copper than normal people,because copper is inwolved in red blood cell production,hemoglobin production and super-oxid dismutase production,which is higher,than in normal persons.It is alos important for iron metabolism.So be careful with the copper... :wink
http://www.ncbi.nlm.nih.gov/pubmed/9656419
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Thank you kindly for the information ParkerLewis, do you think that this applies to thal majors and minors alike?
Thanks again,
Sharmin
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Andy,
I have noticed that since my son began taking B vitamins his energy levels have increased manyfold.
For myself I have noticed that I am crashing despite taking multivitamins, my vitamin D levels are now good too and my hg is 11.2 (which is good for me). I am usually very energetic, these low energy levels are making it hard for me to function. I am wondering if taking folic acid and B complex may be a good idea for me too. Do you know what dose I should be taking? I am 47kg.
Thanks again Andy,
Sharmin
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Sharni,
I take the B complex you can see at http://www.puritan.com/b-complex-vitamins-021/b-100-complex-ultra-b-complex-capsules-010282 Take one daily.
Any natural source B complex like this would be good. the amounts of B vitamins in multi vitamins is too low, so look for a B-100 supplement. You might also consider some form of wheatgrass. I am taking vitamin D twice daily now and it has made a noticeable difference.
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Thanks Andy,
I will start taking those asap. Little A noticed a change within 2 weeks after starting B complex.
Sharmin
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Andy,
Is an L-carnitine (400mg) and alpha Lipoic Acid (200mg) supplement good for thal minors as well? My husband and I are hoping to take the supplement as well. I am sure that thal minor can be taxing on our bodies over time. I am also considering IP6.
Thanks Andy,
Sharmin
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Sharni,
There is a great likelihood that many thal minors suffer from mild pulmonary hypertension (PHT) as they get older. Reading the posts of so many older minors, you see the symptoms of PHT mentioned over and over. It is well known that PHT is found in major and prevalent in non-transfusing intermedias, and causes include long term hypoxia or shortage of oxygen and loss of nitric oxide in blood vessels, leading to loss of flexibility which causes high blood pressure in the artery between the heart and lungs. I think many minors would benefit by trying to promote nitric oxide production and L-carnitine can help. Watermelon is a good food source of nitric oxide inducers.
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Thank you Andy :)
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Andy,
My maternal grandmother - is in her late 70s now. She has thalassemia minor and about 9 years ago she started to have heart palpatations. The doctor put her on blood thinners and meds to slow her heart rate. This caused her heart beat to drop very low so she has had a pacemaker for many years.
I suspect that having a low hemoglobin most of her life has contributed to her heart issues. My mother, who is 53 also complains of an occasional skipped heart beat, I wonder if that can also be attributed to thalassemia.
I think that all thals minors should take supplements to protect them from the long term effects of anemia.
Sharmin
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My mother, who is 53 also complains of an occasional skipped heart beat, I wonder if that can also be attributed to thalassemia.
My mother always had an issue of heart palpitations,she admits that she feels better when she keeps taking her multivitamin,but she is taking Theragran,which contains a little bit of iron and she takes it on almost daily basis,i don't know if iron on daily basis,even if in small dose is good for her,i have asked numerous times to change her multivitamin,but she won't listen to me :sadnope .
Zaini.
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Zaini,
I agree that thal minors need to make an extra effort in taking care of themselves, it can be taxing on the body to be anemic all of the time. Mom's are like that - mine can be pretty stubborn too :-\
I agree that thal minors should not be taking supplements with even small amounts of iron.
Sharmin