Folic Acid or Folate which is better for Thalassemia Intermedia (HBH disease)?

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Offline Hana

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I am 32 years old and was diagnosed with HBH disease since 2013. My hemoglobin level is between 7-8. Never had blood transfusion until early 2016 that i had dengue fever that made my hemoglobin level drop to 5, so I got 3 bags of blood transfusion, then my Hb went up to 9. From time to time when i've got feeling very tired and dizzy that i could not stand, I'd had to get my blood transfusion , Second times blood transfusion was in december 2017 ( 1 unit of blood transfusion), Third times blood transfusion was in april 2019 (1 unit), last times blood transfusion was in december 2019.

I always take these Vitamin Supplements  everyday

Folic Acid 5mg
Natural E 400iu
B complex
Total Calcium Magnesium + D3
Vitamin D3 1000iu

by talking these Vitamin Supplements, they help to keep me from tiredness my Hb level between 7-8 ( no drop below 7 ). But I heard that Natural Folate (5-methyltetrahydrofolate) is better, so i want to change talking Folic Acid to Folate, but it is hard to find Folate where i live, fortunately one of the doctors that i know had this  Natural Folate , so i went to her place and had my health check up . I asked her that i wanted to stop talking my Folic Acid and change to taking her Natural Folate ,but i don't know which one should i take 1700mcg or 8500mcg ,
https://www.amazon.com/Designs-Health-L-5-MTHF-1000-Micrograms/dp/B004D3Z2QC   or https://www.amazon.com/Designs-Health-L-5-MTHF-Quatrefolic-Methylfolate/dp/B00HVGAM3G

 then she said that i had to have my blood and vitamin tested before she could give me suggestion, and I followed her, but after that she prescribed me these Vitamin Supplements for 3 months, then go to meet her again in the next 3 months(October)

1 - B-SUPREME ( Folate 200mcg, B1 100mg, B2 50mg, B3 50mg, B6 50mg, B12 250mcg, Biotin 2mg, Pantothenic Acid 100mg)
1 - SAMe (Folate 170mcg DFE, Vitamin B6 5mg, B12 50mcg, SAMe 200mg)
1 - Phosphatidylcholine ( 420mg)
1 - COMPLETE MINERAL COMPLEX
1 - DHA/EPA

2 -VITAMIN D COMPLEX ( Vitamin A 1500mcg, D 2000iu, E 3.9mg, K 525mcg)  ( 2 Pills of this vitamin but i just take 1 pill a day because I afraid of high dose of Vitamin A)

I have these questions:

I have just been started to take these vitamins that my doctor gave me for a few days.

*so in a day i've just been taking Folate 370mcg and natural E 3.9mg a day , is these enough for Thalassemia Patients HBH disease?
*Should I go to my doctor and ask her to prescribed me more of Folate ( one of the two links above) and natural E ?
* If I take vitamin A 3000mcg a day ,is it harmful for me?

I don't understand why she would not prescribed more Folate to me which make me very worried that if i continue to take just this little of Folate and Natural E , my Hb level wil drop , I am very stress now.

Thank you
« Last Edit: July 25, 2020, 03:48:04 PM by Hana »

Have you read this?

https://thalassemia.com/nutrition-and-diet.aspx#gsc.tab=0

https://www.thalassemiapatientsandfriends.com/index.php/topic,5190.0.html


We use Life Extension, Now and Superior Source  methylfolate at home.  Life Extension and Now has 1mg and 5mg pill/capsule. Superior Source‚Äôs pills are sublingual and available in 1mg.
[Lord, grant me the serenity to accept the things that I can not change, the courage to change the things that I can and the wisdom to know the difference.

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Offline Andy Battaglia

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  • Will thal rule you or will you rule thal?
Hana,

What your doctor is giving is good, but the vitamin D is a low dose with little benefit. I will swear by the dose of 50,000 IU once weekly. I was told that's how thals are successfully treated for low D  and I also decided to take that dose and my low D problem was finally solved. I would also suggest that you do take the extra folate supplement. 8500 mcg won't hurt you and it would be worth trying to see if it is more effective. I started taking 5000 mcg daily and daily B-12 and I won't stop taking it. It has had a very positive effect on my late afternoon, thyroid related fatigue and enabled me to finish my work days.
Andy

All we are saying is give thals a chance.

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Offline Hana

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Thanks Andy
 I will try to take 8500mcg of the Folate and more of Vitamin D with all the vitamins that my doctor give me ,and see if it can help me more energy. So what about B12 you mentioned, how much mcg should I take a day? And What about Natural E , Does it necessary for HBH Patients like Folate or not? And how many mg or IU of Natural E do u recommend ?

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Offline Andy Battaglia

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  • Will thal rule you or will you rule thal?
Take up to 5000 MCG B-12 as a sublingual tablet daily.
400 IU natural vitamin E daily.
Folate is the only universal recommendation for alpha thal, so it's something all doctors should prescribe to alpha patients.
Andy

All we are saying is give thals a chance.

 

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