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Thalassemia Patients and Friends and thalpal © A. Battaglia 2019





55338 Posts in 5915 Topics by 6219 Members
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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: Beta Minor - Endurance - Supplements  (Read 1198 times)
Jairo Ammirati
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« on: June 05, 2020, 12:32:01 PM »

I'm a Beta minor doing endurance (Ironman) sports.

Listing only what is out of range below. I dont have any Iron or recent Ferritin
HB 12.9
MCV 70.4
MCH 22.6
RDW 19

These are the supplementation that I'm currently using - * related to thal

Beta Alanine
   - CarmoSyn Beta Alanine - 800mg
   - L-Histidine 7.5 mg


Chrysin  - 5,7 - Dihydroxyflavone -- 1000 mg

Tribulus Terrestris Extract  - 750mg

Longjack |  Eurycoma longifolia Extract  - 1200mg

Folic Acid - 800mg *

Acetyl L Carnitine HCI - 750mg *

Ubiquinol QH-Absorb - 100mg *

Magnesium Aspartate 250 mg *
Potassium Aspartate 250mg *

Quercetin - 500mg

B12 - Sublingual

GNC Mega Men Sport

Reading some posts here it seems that i should also add these:

L-Arginine  - 750mg
L-Citruline - 250mg

Vitamin E  (d-Alpha Tocopherol 268 mg & Mixed Tocopherols 26.75mg )

L-Methylfolate - 15mg

Alpha Lipoic Acid ? Dosage?

phytic acid? Dosage?

Vitamin D3? 1000mg ?

Vitamin C? 1000mg?   Liposomal Encapsulated Vitamin C

Resveratrol? Dosage?

Zync + Cooper ? Dosage ? 50mg ?

Is there a better time of day to consume it? Morning, with meals etc

Also, adding these supplementation will i have some improvement on my HB levels?

thanks
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Melontan
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« Reply #1 on: June 06, 2020, 03:25:40 AM »

Sublingual B12 is great for an energy boost and building red blood cells.

L-methylfolate at 15mg is usually used together with an Selective Serotin Reuptake Inhibitor (SSRI) to treat depression.

Symtomatic thal minors may need anywhere from 1-5mg of methylfolate to bring up their haemoglobin levels, some may need 10mg to feel better.

Folic acid is synthetic and seven times less bioavailable than methylfolate. Not everyone is able to process folic acid and it can make them unwell if they have an MTHFR mutation.

I am not sure if you have this thread
http://www.thalassemiapatientsandfriends.com/index.php/topic,4890.msg46774.html#msg46774 but this what Andy recommends for thal minors to take. As for L-Carnitine, he recommends taking 5mg.

“Supplements:
Absolutely necessary are-
Folate 1-2 mg daily. Thal minor women trying to get pregnant or pregnant should be on doses of 2-5 mg daily. Folic acid is a basic building block of RBCs and it is essential in all forms of thal. The better form to use is l-methylfolate, as it is more bioavailable and many people cannot process folic acid properly. Studies have shown that women in general maintained higher Hb levels during pregnancy than those who used folic acid. http://www.ncbi.nlm.nih.gov/pubmed/21440300 

CONCLUSIONS:
In the present study, supplementation with a prenatal medical food containing L-methylfolate and high-dose vitamin B(12) may maintain hemoglobin levels and decrease rates of anemia in pregnancy more effectively than standard prenatal vitamins

Natural vitamin E complex. Use only natural d-tocopherol and mixed tocopherols. Do not use dl-tocopherol. It is synthetic and may actually be harmful in most doses. Take 400 IU natural E daily. This is one of the most important antioxidants you can take and it is good for the lungs and circulatory system. It also slows the aging process.

Vitamin C 500-1000 mg daily. (This dose should not be taken by thal majors). Vitamin C is also a powerful antioxidant, which also has the property of being able to reactivate vitamin E after E has already been used by the body as an antioxidant, making the E even more valuable. C is also essential for the circulatory system, as it is needed for the integrity of the walls of blood vessels. If you bruise easily, you are most likely deficient.

Magnesium 250-500 mg daily. In women, it is advised to take with calcium in a 2:1 ratio of Cal to Mag. Anyone experiencing heart palpitations should take cal/mag daily as these two minerals control the two sides of the heart beat. An imbalance or deficiency can lead to palps. Magnesium is also needed to build RBCs and deficiency is often a cause of restless leg syndrome.

B Complex (100 is recommended). Essential for building RBCs and maintaining energy levels. B vitamins are water soluble and need to be constantly replenished. The modern diet does not provide enough B vitamins.

Vitamin D levels should be checked in anyone experiencing tiredness or fatigue. D deficiency is the most common deficiency in today's world, with 1/2 to 2/3 of the world's population deficient. Get tested. If your level is not at least 35, correction is needed. Throw out any information about vitamin D that is more than 5 years old. It is now recognized that doses of at least 5000 IU daily are required daily to budge the level. Often, doses of 50,000-60,00 IU are prescribed weekly. Deficiency is behind a host of health issues, as D is essential for most minerals and many vitamins to be properly absorbed and used by the body. Taking minerals without taking D is almost useless. D deficiency is implicated in anything from a low immune system to depression. Get tested if you haven't already done so. No exceptions here, unless you get daily exposure to the sun year round (this mean short sleeves for over an hour a day).

Optional:
Trace minerals like selenium, zinc and copper should be considered, especially if the diet does not include a wide variety of nutritious foods.

CoQ10, glutathione,  Alpha Lipoic Acid and L-carnitine (or L-arginine or L-citrulline) can also be considered. Patients finding they get more tired as they age should definitely use L-carnitine.

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[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.
Jairo Ammirati
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« Reply #2 on: June 08, 2020, 08:03:33 AM »

thank you!

Yes, i have seen all pots but i believe it is time to pin a post on the first page with all recommendations especially because the thread stared in 2006.

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Andy Battaglia
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« Reply #3 on: June 08, 2020, 07:30:20 PM »

jammirati,

Your MCV and MCH are low, as expected with thal minor. It just means your body produces some smaller and some defective red blood cells and that brings down the average. The RDW is slightly high, so your iron might be on the low side. this can be raised with diet, and taking vitamin C daily can also help you absorb more iron. The RDW is not high enough to warrant concern about iron deficiency. Typically, the MCV will be lower if iron deficiency is present along with thal minor.

You wouldn't need Phytic acid. Its usually is mostly to help remove iron and protect organs from iron damage. This isn't a problem for minors.

Folate over folic acid. Better absorbed and safer in high amounts. I started taking 5 mg daily a few months ago and it wiped out the late afternoon fatigue my thyroid gives me.
Magnesium should be at least 500 mg daily. If you have restless legs or trouble sleeping, take right before going to bed.

B12 note. Sublinguals of 5000 mcg make a noticeable difference.
Vitamin C. At least 1000 mg daily.
Vitamin D. Daily doses aren't the right thing for many people. Once weekly high doses work much better. I take 50,000 IU once weekly, even in the summer.
Zinc 50 mg Copper 2 mg. Some companies sell the two together.
Resveratrol may not be necessary for you. Your Hb is pretty good for a minor. I don't know if it would be worth trying resveratrol.

It's easiest to take most supplements after meals. It can be split in half and take after breakfast and dinner. B vitamins and D are best taken earlier in the day. They could keep you awake if taken at night. Minerals can be taken after dinner or before bed.
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Andy

All we are saying is give thals a chance.
Jairo Ammirati
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« Reply #4 on: June 09, 2020, 04:46:09 PM »

Andy,

thanks for all the answers.

Last question, my HB is 12.9 ( little under the low limit that is 13.2). Are  there anything (supplement )  that can bring the HB level , lets say at least to 14?

Thanks
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Melontan
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« Reply #5 on: June 10, 2020, 05:53:35 AM »

This is something I have been wondering about, and I hope you do not find this gross. Why is it as a menstruating female, I have HbE trait, my hb is at 13.4, as opposed to a male who does not lose blood monthly and has a lower hb.
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[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.
Jairo Ammirati
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« Reply #6 on: June 10, 2020, 10:36:57 AM »

Another question would be: what type of Magnesium?
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Andy Battaglia
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« Reply #7 on: July 06, 2020, 01:30:48 PM »

Jairo,

Two things that can be tried to bump the Hb are L-methylfolate at 2-5 mg daily and Sublingual vitamin B-12, 2000-5000 mcg daily. Folic acid is synthetic and should not be used in those doses, but folate is natural and is fine to use at high dose.
I use that patented TRAACS magnesium sold by Life Extension. It works very quickly.
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Andy

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Andy Battaglia
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« Reply #8 on: July 06, 2020, 01:33:20 PM »

Melontan,

There are many variables, such as available nutrients and genetic differences that can account for different Hb levels is similar patients. An example of a genetic factor would be a beta thal carrying alpha thal. This typically moderates the condition and a more mild condition will result.
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Andy

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Melontan
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« Reply #9 on: July 07, 2020, 05:59:59 AM »

Hi Andy,

My daughter has Alpha II minor with the co-inheritance of HbE trait. At 1 years old, her hb was 13.1. At 10 and 11 years old, it was 12.4. By 14 years old, her hb had dropped to 9.4. She does not have heavy periods. We managed to bump her hb back up to 11.4 using B12, methylfolate, B-Complex. But I still don’t understand as to why it dropped so much.
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[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.
zahra
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« Reply #10 on: July 10, 2020, 06:40:23 AM »

Hi Andy,
I hope you and your family are doing well.
This question intrigues me. My older son has a Hb of 12.9 & donated bone marrow to my youngest. Doctors say the recipients Hb should be close to the donors but the youngest one has a Hb of 8.9 consistently. Any ideas why this is so?
Also have you seen other cases with this much of a difference between donor and recipient Hb?
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Andy Battaglia
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« Reply #11 on: July 26, 2020, 05:13:07 PM »

Hi  Melontan,

It does seem that many of the problems associated with thal can worsen as thals get older. Many intermedia patients will be normal when young, but will eventually end up needing transfusions, as their Hb level often drops as they get older. I would suggest continuing the supplements and also making sure her diet is fully nutritious. Avoiding junk food and empty calories is very important and should be a lifelong goal. It is also important to avoid the substances that can cause hemolysis, the destruction of RBCs in thals, especially in those who carry alpha. Patients may be very sensitive to things like artificial scents. A list of things to avoid can be seen at http://www.thalassemiapatientsandfriends.com/index.php/topic,3410.msg34830.html#msg34830  Any of these substances and others can cause the Hb to drop in alpha thals.
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Andy Battaglia
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« Reply #12 on: July 26, 2020, 05:44:51 PM »

Zahra,


I don't think I've seen such a wide gap between donor and recipient before. Is the donor son a minor?
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Andy

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Melontan
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« Reply #13 on: July 27, 2020, 07:45:10 PM »

Hi Andy,

My daughter is 16 now and stands at 5ft 7 inches, she is on 2-3mg of methylcobalamin, 8.4mg methylfolate, I am giving her one Life Extension B-Complex capsule (Vitamin B1 50mg, Vitamin B2 37.5mg, Niacin 50mg, Vitamin B6 60mg, Biotin 1000-2000mcg, D-Calcium Pantothenate 250mg, Calcium as D-calcium panthothenate and dicalcium phosphate 45mg, inositol 50mg, para-aminobenzoic acid), 5000 iu Vitamin D, 500mg vitamin C, 2.5mg of Wild Alaskan fish oil, Artic cod liver oil 30mcg RAE. The oil based supplements are taken seperately.

She is currently on two medications for her depressive moods, but we are removing aripiprazole and keeping sertraline for a bit longer. I am intend on increasIng the dosage of methylfolate.

I learnt from the psychiatrist that they do have quite a few thals with mood disorders, even the paediatricians told me that it is common. However, antidepressants don’t seem to work on thalassemics but they still have to start with SSRIs for treatment. Having conversed with other thals on the FB group, they also report the lack of effect of SSRIs.

This morning, my daughter said that she is starting to feel the despair again, I think that artificial scented candle that she was using instead if essential oils might be a contributing factor.

At The National Thalassemia Registry, the nurse told us that they had one intermedia patient that only requires transfusions at 21 years old.
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[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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« Reply #14 on: July 28, 2020, 04:01:06 PM »

You might try a once weekly dose of 50,000 IU vitamin D, instead of the daily doses. It does work better with a high dose once weekly and vitamin D can help with depression. I would also recommend 500 mg magnesium daily, as it also helps with depression, and is also one of the more important nutrients for thals.
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Andy

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