Thalassemia Patients and Friends
Discussion Forums => Diet, Nutrition and Supplements => Topic started by: testsubject on July 18, 2014, 06:00:03 AM
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I got 90 800mg tablets from "Source Naturals" and I am wondering how I should take it. It looks approximately like the ferriprox tablets (long and big) and I don't know if I should dissolve it or just swallow it with some water. I just swallowed it with a glass of water. Also, are 2x800mg tablets per day (one in the morning and one in the evening) enough? I weigh 105lbs (47kg) and am a 5'4" (1.63) tall, 15 years old male.
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Your dose is fine. I guess they will be in capsule form? If so, just swallow them with a glass of water or green tea (Andy recommends green tea but its not necessary). Just make sure it doesn't constipate your stomach though. I immediately always showed signs of constipation so unfortunately I had to discontinue them. :/
But a lot of people here takes it and just does fine. It works excellent if supported by your body.
-P.
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Thank you for your fast answer! Yes, they are in capsules. I went to the toilet like an hour after I took it, but I will still watch out for any side effects. One more important question about another supplement - folic acid! Is it safe for a thal major to take with high ferritin (2000+) on Exjade? If so, how much should I take? I think I can only find 0.4mg tablets, so maybe take one in the morning and one in the evening, like Exjade and IP6? Should I take it after I've eaten or empty stomach is fine? What dose should I take? As I said, I am 15 years old, 5'4", ~105lbs. I also take 600mg calcium + 3,125ug. What does folic acid help with, exactly? Will it help me maintain hemoglobin for a longer time? Because that would be great. I don't get tired easily and I'm trying to be more and more physically active and gain some weight, but as time comes for transfusion I get light headaches and get exhausted easier.
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Thank you for your fast answer! Yes, they are in capsules. I went to the toilet like an hour after I took it, but I will still watch out for any side effects. One more important question about another supplement - folic acid! Is it safe for a thal major to take with high ferritin (2000+) on Exjade? If so, how much should I take? I think I can only find 0.4mg tablets, so maybe take one in the morning and one in the evening, like Exjade and IP6? Should I take it after I've eaten or empty stomach is fine? What dose should I take? As I said, I am 15 years old, 5'4", ~105lbs. I also take 600mg calcium + 3,125ug. What does folic acid help with, exactly? Will it help me maintain hemoglobin for a longer time? Because that would be great. I don't get tired easily and I'm trying to be more and more physically active and gain some weight, but as time comes for transfusion I get light headaches and get exhausted easier.
Hi,
Folic acid 400mcg (0.4mg) is perfect dose for thal majors. Minors take around 5 mg especially pregnant ladies. But for us thal majors, 0.4mg is a fine dose. I take it as well. It helps a little bit yes but don't expect much from it being a major like me. But it is a nice and recommended supplement for thals.
It doesn't ideally matter whether you take empty or full stomach, just have it at any time you please. :)
It and B-complex vitamins yes helps me too with tiredness. So I recommend adding B-Complex to your regimen too if you haven't already. Your calcium dose is fine too although I am trying to take 1000mg these days as it's norm. But make sure though that you're having magnesium in 1:2 ratio with calcium too. For example if you take 600mg calcium, make sure to have 250-300mg magnesium too. Too much calcium alone is not good for heart. Calcium gives power for heart to beat and magnesium regulates the frequency of the beats. :)
-P.
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Thanks for the post!
I am going to follow your advice and get 250mg Magnesium and 0.4mg Folic Acid. I am pretty sure I can find them cheap at my local pharmacies. What do you suggest - one or two doses of Folic Acid? You said 0.4mg was fine, but would 0.8mg be better or should I stick to one dose? I get calcium from both the Calcium + Vitamin D supplements and the IP6 should have some, as well. I also eat a good amount of dairy and eat 400g of yogurt every day or every other day. By the way, my cardiologists suggested taking 50mg of Spironolactone daily, which is a diuretic. They said it helps after the transfusion. First I was told that I should be taking it 5 days after transfusions, but they later changed their minds and told me I can take it every day. Do you have any information on that?
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zelebrokoli,
You should take the higher dose of folic acid.
IP6 is best taken on any empty stomach. Exjade can be taken whichever way that works for you. It can be mixed with liquids, it can be crushed and mixed with foods, and it can be taken on an empty stomach or even after a meal, which helps some people avoid nausea. We find that those who split the dose into two and take half in the morning and the other half later in the day, have fewer side effects and better chelation results. If your ferritin is refusing to drop, try split dose.
If fluid retention after transfusion is a problem, why isn't Lasix administered instead of Spironolactone, which does have many possible side effects?
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Thank you for posting, Andy.
I've been taking split dose for, I don't know, 7-8 months? My ferritin goes lower and then goes back up. I am going to have an MRI next month and after the results are out, the doctors will decide if they should change my medication. I also think I will have a ferritin test next time I go for a transfusion. I should've been there at Tuesday, but there's no blood available so I will have to wait until next week. If there is more iron in the heart than the liver, I will probably start using Ferriprox. But if the ferritin starts going down, I will stay with Exjade.
I will look forward to getting Folic Acid as soon as possible. I have a question about calcium, though - I started taking 250g Magnesium, but I am getting 600mg calcium + ~400 from the 2 tablets IP6 I take every day. Should I worry about receiving too much calcium? My mom is always telling me that I shouldn't take so many pills, but I think it is way better than doing nothing.
About Lasix, I don't think it's very popular where I live. What are the possible side effects of Spiro?
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IP6 does not normally have calcium added. If you are already taking a good dose of calcium, there is no need to add more.
What concerns me most about Spironolactone is the effects on the heart.
http://www.rxlist.com/aldactone-side-effects-drug-center.htm
Can you tell me what your dose of Exjade is?
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6 pills daily. I take 3 in the morning and the other 3 in the evening.
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How many mg per tablet?
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250mg. Also, here is the IP6 I use: http://www.sourcenaturals.com/products/GP1163 Choose Tablet on the side and view the Supplement Facts. It says it has both Calcium and Magnesium in it.
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I see. That brand is much higher in calcium and magnesium that most other brands. Good find.
You are taking 1500 mg Exjade daily. That should be a high enough dose to reduce your ferritin. Have you been on that dose for long?
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I am not sure, maybe 6 months or more. Anyways, I do not intend on making any decisions about my chelator until my doctors decide to. Let's hope my ferritin starts going down soon enough so my organs don't get too damaged.
I just read that folic acid helps the body absorb iron. If that is true, why is it recommended for thals? What exactly does it help with?
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OK, 6 months is a very short period with Exjade. I would suggest just be patient. Exjade removes iron from organs and tissue first and this will not quickly be reflected in ferritin levels. It often takes up to 2 years to see the true progress with Exjade.
I have never seen any source that claims folate increases iron absorption. If you have such a source, I would like to see it. Folic acid is very important for the building and protection of red blood cells, and is widely recommended for thals. The overactive bone marrow means that the nutrients required to build RBC's are depleted and need to be replaced.The nutrient that does aid absorption of iron from vegetable foods is vitamin C, but the absorption from non-meat sources is very poor, 15-40%, as opposed to 80-100% of the iron absorbed from meat sources. It creates an issue with thals, because avoidance of C leads to deficiency and weak veins. I recommend that patients take up to 250 mg C daily but not with meals, or that citrus is consumed as a snack and away from iron rich meals.
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Well, I can't really give you source because the website is in Bulgarian. But I would much rather trust a doctor like you than some website whose main job is to make profit. I actually think it was mentioned because both Folic Acid and Iron are good for you (unless you have an abundance of iron in your body) and they are best when combined, like Calcium and Magnesium, so you win the argument. The only obstacle right now is my mom because she always keeps an eye on what I buy and she is SO insistent on me consulting my doctors, even when it's something which has ZERO side effects. She keeps telling me that I shouldn't eat eggs because she has heard it from a doctor before, but when I ask her why she thinks eggs are bad for you she just gives me that look and tells me that she has heard it from doctors, even though she knows that they are high in protein and amino acids. I will sort this out somehow. She thinks she can take part in every choice I make because I am 15, but I'm working on getting over it. Thank you for giving me so much information on the subject.
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I am not a doctor. I am a volunteer who has spent more than a decade learning about thalassemia to help those who need help. I am very well informed about nutrition and why thals need added nutrients. I have attended many thalassemia conferences in order to learn from the very best thal doctors on earth, and many of them recognize the value I bring to the thalassemia community and lend advice when needed.
Yes, I have seen the studies on anemia about folic acid and iron combined and since both are required to build red blood cells, results are better when both are taken if the patient's anemia is nutrient related. The nonsense about eggs was based on bad research and bad research techniques. In fact, the whole argument against cholesterol is based on false science. Eggs are a very healthy food. What should be avoided are empty calories like excess sugar and highly processed foods, which have been stripped of most nutritional value. I recommend that thals eat a diet high in fresh fruits and vegetables so they can get needed nutrients and antioxidants. Antioxidants are often the forgotten part of thal diet, but do more to protect your body from the products of red cell breakdown and the damage done by iron than anything else you can take. One thing I do suggest is that patients show the Standards of Care for Thalassemia document to their doctors if their doctors are not very familiar with the current standards of treatment. You can find this in our Documents section (third item on the list).
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By the way, one of our moderators has a 15 year old thal son and they have followed my advice on nutrition since he was 6. His pituitary MRI scan showed it to be clean of iron and normal for his age, which is almost unheard of among thalassemics. Antioxidants are the key to protecting the pituitary and other glands.
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Hi,
As Andy said, your IP6 supplement has good amount of calcium already included. But it has just 100 mg magnesium. So you're doing great by taking additional 250 mg as supplement which makes great ratio for calcium and magnesium.
About your mom worrying too much, haha. Parents are naturally over protective in nature especially when you're thal. However, I didn't had much troubles with supplements but my brother is definitely like your mother asking to check with a doctor even before taking generic supplements like this. :)
But when there's even a slightest doubt, definitely consult the doctor first but natural supplements like calcium and magnesium are great and harmful by no means provided you take in right amount of doses, which you are.
Best,
-P.