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Thalassemia Patients and Friends and thalpal © A. Battaglia 2018





54614 Posts in 5779 Topics by 5985 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: Nutritional Advice for Thal Minors  (Read 84583 times)
Andy
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« Reply #60 on: October 01, 2016, 12:21:14 PM »

Testing vitamin D should be included.

Now, you may be told levels are within range, but if B-12 or D are on the low end of normal, it's not good enough. Thals do much better when B-12 is near the high end of normal and with D levels above 40.
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Andy

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« Reply #61 on: February 14, 2017, 01:30:39 AM »

 Hi Andy & thal friends,

I am a 53 yr old  Thal B minor diagnosed at the age of 23 yrs

My questions today are

1)  Beetroot is better raw or cooked ?
2) What should be the dose of Wheat grass powder ?
3) What should be the dose of Wheat grass tablets ?

Thanks so much for this forum

Good health to all
Urja
« Last Edit: February 15, 2017, 02:52:50 AM by urja » Logged
harris
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« Reply #62 on: February 15, 2017, 02:38:49 AM »

Hi Andy, I recently joined this group and thanks for you initiative.

Me (M38) and my son (M 11) both are Thal Minor,  I have few questions, I request your highlights.

While reading your post, i come to know that supplements are compulsory for Thal Minor, i would like to know before starting supplements/ medicine, should we go for blood test, if yes what are the test, secondly is there any specialist doctors who can deal better to thal patient.

I look forward for your advice please.

Regards -Harish Bhatt
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Andy
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« Reply #63 on: February 17, 2017, 10:46:07 AM »

No blood tests are needed, other than possibly getting the vitamin D levels checked. Testing for nutrients only shows the level in the blood. It does nothing to tell you what your body's actual needs are. The processes at work in thalassemia deplete nutrients. Replacing them is one fo the few things a thal minor can do to achieve better health.
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Andy

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urja
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« Reply #64 on: March 03, 2017, 05:29:49 AM »

Hi Andy,
Im confused about ...

1)  Beetroot is better raw or cooked ?
2) What should be the dose of Wheat grass powder ?
3) What should be the dose of Wheat grass tablets ?

Thanks so much for this forum

Good health to all
Urja
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Andy
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« Reply #65 on: March 05, 2017, 05:41:15 PM »

Raw beets have more vitamins that cooked. If they are cooked, it is best to steam for no longer than 15 minutes, as the longer beets cook, the more nutrients are lost.

Follow the instructions on the wheatgrass product you use. It can vary greatly from brand to brand. Powder or tablets made from the juice require a smaller dose than wheatgrass that is made from the grass itself.
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Andy

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jsbhavsar
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« Reply #66 on: May 10, 2017, 07:47:54 AM »

Nomad, that's a form of Niacin, vitamin B3. While it does have value, it is not the chelator.

In Feb-2017 I hd uric acid of 6.8. However, I started B12 shots that comprised cynacobalamin 500mcg, folic acid 1.5mg and nicotinamide 100mg. Alternate day one 2ml shot.

After taking 4 shots, I had discomfort on kidneys.
After taking 5 shots, kidney pain continued and uric acid had shot to 9.

What I suspect, the nicotinamid in the B12 shot may have shot the uric acid to 9 in 12 days time.

http://www.livestrong.com/article/474323-can-niacin-cause-gout/

Seeing a high uric acid of 9, doctor prescribed Febuxostat 40mg tablet to me and the game changed completely.
Febuxostat was replaced with Allapurinol drug and that did not help me either.
Uric acid stands 10.0 today.

Doctor is insisting that some drug (Febuxostat or Allapurinol) to control uric acid maybe required 1 tablet once a day or 1 tablet alternate day.
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Saeed Ahmed
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« Reply #67 on: May 25, 2017, 12:05:56 AM »

Dear Andy,

For my 5 Yr old son with Thal B Trait  as my Hematologist did not prescribed any supplements or iron i am giving him papaya, mango, dates, orange, apple and spanich as they are consist of Vitamin A,C,E, floic aicd and iron apart from others.
He hates beet root 
Thank You.

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Andy
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« Reply #68 on: May 26, 2017, 03:35:04 PM »

Papaya is very good for the spleen. I mentioned in another post that muskmelon juice is also supposed to help shrink the spleen size. The foods you are giving are all very nutritious. This is how the entire diet should be, only nutritious foods.
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Andy

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CA
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« Reply #69 on: November 17, 2017, 04:36:44 AM »

Hi Andy,

Is this nutritional advice for both alpha and beta Thal Minors? Is there any special thing I have to know regarding alpha minors?

Cheers,
Cris
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Andy
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« Reply #70 on: November 23, 2017, 02:54:08 PM »

In general, the nutritional advice applies to both alpha and beta thal. The main difference is that attempts to raise fetal hemoglobin in alpha thal will not work, as there is a deficiency of alpha globin to combine with gamma globin to make HbF. Anything that is needed to build and maintain RBC's can help, especially folate, B12 and magnesium.
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Andy

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anaisaoco
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« Reply #71 on: March 06, 2018, 06:00:19 PM »

Hi Andy

I tried purchasing the multi vitamin you recommended in this post, but it has been discontinued.
https://www.allstarhealth.com/f/natures_way-alive_multivitamin_no_iron_added.htm

When trying to find an alternative, I ended up buying the version with added iron. Undecided
https://www.amazon.co.uk/gp/product/B0009F3RO2/ref=od_aui_detailpages00?ie=UTF8&psc=1

A serving contains 18mg of Iron (as ferrous bisglycinate chelate). I attach the full nutritional information table.

Is this too much iron for me to take?

I am actually a beta thal intermedia, my hemoglobin is currently at 8.1, which is up from 6.5 a month ago when I miscarried. My ferritin is 437 ng/mL, iron serum 132 µg/dL and transferrin at 157 mg/dl with a saturation index of 60%.

I am currently taking 10mg daily of folic acid (perscribed by the doctor), a teaspoon of spirulina powder, B complex (100) and Maximised L-Glutathione 250mg from reading this forum and recollection of what I used to take as a teenager, but I was really hoping I could take a multi vitamin as well.

Thanks so much
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Andy
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« Reply #72 on: March 15, 2018, 06:04:05 PM »

This one looks very much the same, but with no added iron. https://www.amazon.co.uk/Natures-Way-Premium-Formula-Multi-Vitamin/dp/B0009F3ROC/ref=sr_1_1_s_it?s=drugstore&ie=UTF8&qid=1521154781&sr=1-1&keywords=nature%27s+way+multivitamin+no+iron
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Andy

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giggles
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« Reply #73 on: March 17, 2018, 12:24:24 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

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)





« Last Edit: March 17, 2018, 01:29:11 AM by giggles » Logged
anaisaoco
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« Reply #74 on: March 17, 2018, 08:46:20 AM »

Thanks Andy, that's the one I wanted to have ordered but I clearly did something wrong. In Portugal it's very hard to find multivitamin supplements with no added iron, so I resorted to ordering online.
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