Vitamin and Mineral Supplementation in Thalassemia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #240 on: May 06, 2021, 06:53:39 AM »
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


Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #241 on: January 23, 2022, 04:47:19 AM »
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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Offline Manjit

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #242 on: February 22, 2022, 09:26:58 PM »
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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Offline Andy Battaglia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #243 on: March 17, 2022, 10:32:54 PM »
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
Andy

All we are saying is give thals a chance.

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Offline Andy Battaglia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #244 on: March 17, 2022, 10:38:28 PM »
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.
Andy

All we are saying is give thals a chance.

Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #245 on: March 23, 2022, 05:04:31 AM »
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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Offline Manjit

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #246 on: March 24, 2022, 05:22:11 PM »
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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Offline Andy Battaglia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #247 on: April 06, 2022, 11:57:04 PM »
I have not heard of any specific connection between thal and respiratory issues. I would suggest being tested for asthma.
Andy

All we are saying is give thals a chance.

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Offline juvefreaks

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #248 on: August 08, 2022, 05:04:24 AM »
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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Offline Andy Battaglia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #249 on: September 03, 2022, 08:09:31 PM »
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.
Andy

All we are saying is give thals a chance.

 

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