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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2019





55374 Posts in 5922 Topics by 6232 Members
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This is Thalassemia Patients and Friends,
dedicated to its founder,
Lisa Cammilleri.
(1970-2004)
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Author Topic: Nutritional Advice for Thal Minors  (Read 143848 times)
BitterBlood79
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« Reply #75 on: March 17, 2018, 01:08:05 PM »

Hi Andy

im so pleased to have found this wesbite dedicated to helping people with the thalassemia genetic disease.

A little about myself and my past, my name is jeff and i am 21 year old male living in Australia, a few years ago i had a general blood test that included a full blood examination, and the results suggested i had thalassemia traits, the doctor and i discussed about it and he said not to worry about it too much, he stated that it wont effect me, but he did say if he could a problem if i wanted to make a offspring, i would have to check if my partner was also a carrier of thalassemia, and i noted it and that was that.

So for as long as i remember ive always been feeling unenergetic, everytime i wake up i dont feel refreshed at all, i cant remember the last time i had good sleep. i dont have the motivation to achieve any goals or ambition, let alone if i have any at all.

I went back to the gp and dicussed about the lack of energy levels and restless sleeps, and ultimately we ended up talking about sleep apnea, and from there i went to go get a sleep study test done. Long story short, the test showed that i didnt sleep very well, and i stop breathing a few times during my sleep cycle, and from there i talked to the ENT specialist about it, and he examined me and suggested we remove my tonsils, uvulva, fix my deviated nose septum and make my tongue smaller. Well i was put on a waiting list and after a year, the surgery happened and i had the procedures done. Well honestly i feel the exact same way i did before the surgery, still feeling unenergetic and feeling shit after waking up from sleep. There were follow ups after the procedure like seeing how the recovey was going and doing another sleep study test. Ultimately the sleep study test was a fail, because i couldnt even get to sleep with all the machines equipped to myself and i only managed to sleep for 1 hour before the test was done. And that was that, i called them and told them i didnt want any more follow ups.

So recently the thought had came to mind about thalassemia, i didnt think much of it before until now, i started to do some research on the topic and hence i came across this website and now were here.
I dont know what type of thalasssemia i have, but i will post these results that are from 2016, and i have another blood test results coming in a fews days but i dont think that will change in my full blood examination

This test was done by dorevitch pathology

Full blood examination                 (references)

HB: 131 g/L                              (130-180)
PCV: 0.47 L/L                           (0.40-0.54)                           
RCC: 6.98 X1012/L                    (4.50-6.50)
MCV: 67 FL                               (80-96)
MCH: 19 PG                              (27-32)
MCHC: 279 g/L                          (320-360)
RDW: 21.7%                             (11.0-16.0)

b12, folate

serum folate : 28.4 nmol/L           (> 9.0)

vitamin b12                            (150-700)
 
iron studies:

ferritin: 247 u/L                     (20-300)

iron:  19 umol/L                     (10-30)

transferrin: 3.0 g/L                (2.2-3.7)

transferrin sat: 25%               (13-47)

Im going to buy the suggested vitamins and supplements you wrote in your post unless you say otherwise

folate 1-2mg daily (l-methlfolate as an alternative)
b complex 100
magnesium 250-500mg daily
vitamin c 500-1000mg daily
natural vitamin e d-tocopheral 400 iu daily, dont use dl-tocopheral

AVOID IRON

some people posted this on reddit
1g daily l carnitine taurine
creatine monohydrate
ashwaghada (ksm 66 extract)






Hi
I actually added Asghwagandha in my routine. two caps of 500 daily (10 mg of extract)

I'm taking also

folate 1 mg
Vit e natural + mixed toco
- NO B complex neither b12
Vitamin c 250 twice a day
Vitamin D 5000 daily
sometimes Magnesium citrate

I don't know but Who told you to use it probably was right. Since I'm taking It I feel better.
I feel less fatigue, more energy, and I exercise again almost every day. But in my body there is a little side effect, and there is a paradox: I've insomnia (too much dose?).
I added also more protein in my diet (2gr x kg of bodyweight).
My theory is that I was in a low T3 and low cortisol state for poor calories intake and too much exercise.
« Last Edit: March 17, 2018, 01:21:07 PM by BitterBlood79 » Logged
giggles
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« Reply #76 on: March 17, 2018, 11:07:23 PM »

Hi
I actually added Asghwagandha in my routine. two caps of 500 daily (10 mg of extract)

I'm taking also

folate 1 mg
Vit e natural + mixed toco
- NO B complex neither b12
Vitamin c 250 twice a day
Vitamin D 5000 daily
sometimes Magnesium citrate

I don't know but Who told you to use it probably was right. Since I'm taking It I feel better.
I feel less fatigue, more energy, and I exercise again almost every day. But in my body there is a little side effect, and there is a paradox: I've insomnia (too much dose?).
I added also more protein in my diet (2gr x kg of bodyweight).
My theory is that I was in a low T3 and low cortisol state for poor calories intake and too much exercise.

hay mate, thanks for replying, i found people stated that they used Asghwagandha on reddit, they say it makes them sleep better as well. I heard melatonin and zma helps with sleeping, but im not sure if i want to add that to the list of spplements im going to buy and consume, theres too many supplements that i have listed, learning about vitamins and suplements is like opening up a can of worms, theres too much to learn, theres debates about most supplements if they're really effective or not. I dont really know what to buy.
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giggles
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« Reply #77 on: March 21, 2018, 08:07:14 AM »


Hi Andy

im so pleased to have found this wesbite dedicated to helping people with the thalassemia genetic disease.

A little about myself and my past, my name is jeff and i am 21 year old male living in Australia, a few years ago i had a general blood test that included a full blood examination, and the results suggested i had thalassemia traits, the doctor and i discussed about it and he said not to worry about it too much, he stated that it wont effect me, but he did say if he could a problem if i wanted to make a offspring, i would have to check if my partner was also a carrier of thalassemia, and i noted it and that was that.

So for as long as i remember ive always been feeling unenergetic, everytime i wake up i dont feel refreshed at all, i cant remember the last time i had good sleep. i dont have the motivation to achieve any goals or ambition, let alone if i have any at all.

I went back to the gp and dicussed about the lack of energy levels and restless sleeps, and ultimately we ended up talking about sleep apnea, and from there i went to go get a sleep study test done. Long story short, the test showed that i didnt sleep very well, and i stop breathing a few times during my sleep cycle, and from there i talked to the ENT specialist about it, and he examined me and suggested we remove my tonsils, uvulva, fix my deviated nose septum and make my tongue smaller. Well i was put on a waiting list and after a year, the surgery happened and i had the procedures done. Well honestly i feel the exact same way i did before the surgery, still feeling unenergetic and feeling shit after waking up from sleep. There were follow ups after the procedure like seeing how the recovey was going and doing another sleep study test. Ultimately the sleep study test was a fail, because i couldnt even get to sleep with all the machines equipped to myself and i only managed to sleep for 1 hour before the test was done. And that was that, i called them and told them i didnt want any more follow ups.

So recently the thought had came to mind about thalassemia, i didnt think much of it before until now, i started to do some research on the topic and hence i came across this website and now were here.
I dont know what type of thalasssemia i have, but i will post these results that are from 2016, and i have another blood test results coming in a fews days but i dont think that will change in my full blood examination

This test was done by dorevitch pathology on 15/11/2016

Full blood examination                   (Reference range)

HB: 131 g/L                              (130-180)
PCV: 0.47 L/L                           (0.40-0.54)                           
RCC: 6.98 X1012/L                    (4.50-6.50)
MCV: 67 FL                               (80-96)
MCH: 19 PG                              (27-32)
MCHC: 279 g/L                          (320-360)
RDW: 21.7%                             (11.0-16.0)

b12, folate

serum folate : 28.4 nmol/L           (> 9.0)

vitamin b12                            (150-700)
 
iron studies:

ferritin: 247 u/L                     (20-300)

iron:  19 umol/L                     (10-30)

transferrin: 3.0 g/L                (2.2-3.7)

transferrin sat: 25%               (13-47)

Im going to buy the suggested vitamins and supplements you wrote in your post unless you say otherwise

folate 1-2mg daily (l-methlfolate as an alternative)
b complex 100
magnesium 250-500mg daily
vitamin c 500-1000mg daily
natural vitamin e d-tocopheral 400 iu daily, dont use dl-tocopheral

AVOID IRON

some people posted this on reddit
1g daily l carnitine taurine
creatine monohydrate
ashwaghada (ksm 66 extract)


UPDATE!!!

i just got my new results

15/3/2018

full blood examination

Haemoglobin: 125 g/L                     (130-180)
PCV: 0.42 L/L                           (0.40-0.54)                           
RCC: 6.58 X1012/L                    (4.50-6.50)
MCV: 63 FL                               (80-96)
MCH: 19 PG                              (27-32)
MCHC: 301 g/L                          (320-360)
RDW: 19.3%                             (11.0-16.0)



b12, folate

serum folate: 44.8 nmol/L           (> 9.0)

vitamin b12: 385                    (150-700)
 
iron studies

ferritin: 396 u/L                     (20-300)

iron: 19 umol/L                     (10-30)

transferrin: 2.9 g/L                (2.2-3.7)

transferrin sat: 26%               (13-47)


analysing the blood test, not much has changed except the haemoglbin levels, its dropped a bit and looking at my 2016 haemoglbin levels it was barely making it on the reference range, now its not even within the reference range.
Iron studies shows that my iron levels are still the same, however ferrin has gotten worse, its not within the ref chart now, its gone above. Serum folate has increased, i think thats a good thing, vitamin b12 has increased a tiny bit
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Andy Battaglia
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Will thal rule you or will you rule thal?


« Reply #78 on: March 22, 2018, 06:19:04 PM »

Hi Jeff,
 I have messaged in reply to the same questions that are here. I won't say much about a diagnosis of sleep apnea, other than it is a huge money making industry and I am quite skeptical about the value of surgery or CPAP machines for many people.

Have you had your vitamin D level checked? It's important to get it much higher than the low end of normal, which is 30. You want it in the 50-80 range. I am currently taking a once a week dose of 50,000 IU and after years of low doses, I finally feel like it is in the right range.
Your B-12 is okay, but thal minors do better when their level is near the high end. Sublingual B-12 works well. I would suggest 1000-2000 mg Acetyl L-carnitine daily. This has benefits in terms of red blood cell development and lifespan, and is extremely important for fixing nitric oxide in the body, which helps to maintain the flexibility of blood vessels and thus, the circulation, while taking strain off the heart. This problem is often overlooked, even in thal major, and it becomes worse with age, if precautions like L-carnitine and natural vitamin E are not used. Depletion of NO is a great contributor to lack of energy and fatigue as thals age. It is a cumulative problem that has actually been going on since birth, as the antioxidant forces at work in all types of thalassemia constantly deplete NO levels. Search online for foods rich on nitric oxide to make sure you are good getting dietary amounts, but take a supplement of L-carnitine of L-arginine daily.
With your sleep trouble, take 500 mg magnesium right before going to bed at night, or earlier if you get restless legs before bed. Epsom salt baths at night can also help, as you will absorb magnesium through your skin in the bath. Taking a magnesium complex before bed has greatly improved my sleep, which has been bad my entire life. I also take a zinc and copper tablet at the same time. Since I've taken a high dose of vitamin D and added zinc, my immune system has been great. If you take zinc, take it with copper, as taking one, can cause an imbalance with the other.

Get whatever exercise you can do. Even stretching and light walking will help. Gotta keep the circulation going. Vitamin C and E will also help your circulation.
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Andy

All we are saying is give thals a chance.
Andy Battaglia
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Will thal rule you or will you rule thal?


« Reply #79 on: March 22, 2018, 06:21:48 PM »

anaisaoco  , If you can, email the seller and ask them if they do carry the formula with no added iron.
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Andy

All we are saying is give thals a chance.
giggles
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« Reply #80 on: April 06, 2018, 07:10:36 AM »

yo andy, i finally ordered all the vitamins and supplements i needed, ill post it up

i made sure to check the ingredients before buying, as i know some alternatives are better than others
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Tinkerbellissima
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« Reply #81 on: June 03, 2018, 03:49:17 PM »

Hi Andy, Thank you for adding me. I am in awe that you have dedicated so much of your time to the Thalassemic community even though you are not a suffer yourself. My son is 20yrs old and has Thal Beta, he has been kind of okay most of his life. (Somethings are starting to make sense now) in recent months his energy levels have really dropped. His recent blood test came back that he was anemic, but not low in iron. Vit D levels have dropped from 90 last year to 60 this year. I have been reading a lot about the supplements you recommended and I wondered if you had come across Savestrols? They are essentially antioxidants in a high quantity derived from citrus extracts, blueberries, grape seed and blackberry powders. I wondered what your opinion on them was. Any advice for the chronic fatigue is welcome as we are new to this whole thing. Do Vitamin B12 injections work?
I have just started  giving him the following;
Coq10 100mg twice daily
Vitamin E 400iu x1 daily
Selenium 200ug x1 daily
Salvestrol shield x1 daily
Vitamin D3 1000iu x1 daily (should I increase this to raise levels back to 90?)
Vitamin C 600mg and Zinc 14mg lozenge x1 daily
Transdermal magnesium baths
How is this?
I appreciate any advice you can give. He has only just started on these supplements so not sure if they will make any difference yet to his fatigue and foggyness.

Hi Andy, Thank you for adding me. I am in awe that you have dedicated so much of your time to the Thalassemic community even though you are not a suffer yourself. My son is 20yrs old and has Thal Beta, he has been kind of okay most of his life. (Somethings are starting to make sense now) in recent months his energy levels have really dropped. His recent blood test came back that he was anemic, but not low in iron. Vit D levels have dropped from 90 last year to 60 this year. I have been reading a lot about the supplements you recommended and I wondered if you had come across Savestrols? They are essentially antioxidants in a high quantity derived from citrus extracts, blueberries, grape seed and blackberry powders. I wondered what your opinion on them was. Any advice for the chronic fatigue is welcome as we are new to this whole thing. Do Vitamin B12 injections work?
I have just started  giving him the following;
Coq10 100mg twice daily
Vitamin E 400iu x1 daily
Selenium 200ug x1 daily
Salvestrol shield x1 daily
Vitamin D3 1000iu x1 daily (should I increase this to raise levels back to 90?)
Vitamin C 600mg and Zinc 14mg lozenge x1 daily
Transdermal magnesium baths
How is this?
I appreciate any advice you can give. He has only just started on these supplements so not sure if they will make any difference yet to his fatigue and foggyness.

Thanks in advance

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Andy Battaglia
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Gender: Male
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Will thal rule you or will you rule thal?


« Reply #82 on: June 03, 2018, 06:15:52 PM »

Hi Tinkerbellissima,

I don't know a lot about salvestrols, but they are related to resveratrol, which is known to help raise the hemoglobin level and reduce the amount of ineffective erythropoiesis (red blood cells that don't reach maturity) in the bone marrow, and that addresses the main two problems in thalassemia, so it is likely that salvestrols have some use in thals.
B-12 injections do work, but should be reserved for those who show no improvement from sublingual supplements. I know a thal minor who only feels okay when she has a B-12 injection.
If he felt better with higher D, he should try to get back up to that level.
The program looks good, but I would suggest getting a zinc supplement that also contains copper. They should be used together to prevent depletion of the one not taken. L-methylfolate may also be of use in building red blood cells.
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Andy

All we are saying is give thals a chance.
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