The Goal For Thalassemia Patients Today...

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Offline Andy Battaglia

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Re: The Goal For Thalassemia Patients Today...
« Reply #45 on: October 30, 2016, 12:28:40 AM »
Doctors learn very little about nutrition in medical school. I have the benefit of a long history of interest in my personal nutrition, so I had a good understanding already in place when I began to learn about thalassemia, and have greatly expanded that knowledge, and much that I learned, I learned from listening to Dr Eliot Vichinsky, who does stress an overall approach to thalassemia treatment, that includes proper nutrients.

Because you have thal major, you have to limit your vitamin C daily intake, as C frees up iron, which helps with chelation, but when you free too much at once, it can reduce heart function. This is also affected by the iron load. If your iron load is high, no more than 250 mg of C should be taken daily. If the iron load is under control, <500 ferritin, higher amounts of C can safely be taken. I do recommend that all thals do get some C, so get some daily. Vitamin E is very important for thals, as it is a powerful antioxidant, but it also has a blood thinning property that is very useful for thals, whose blood contains a lot of "junk", including alpha globin tetramers from the alpha globin unmatched by beta globin, and the results of the ineffective erythropoiesis that takes place in the bone marrow. Vitamins C and E have a synergy, with C being able to restore the antioxidant properties of E, even after it has already been used. IP6 is a good antioxidant and a supplemental iron chelator. It is useful in cleaning iron from everywhere in the body. I would take vitamin E over IP6 as an antioxidant, but would not reject IP6, as its iron removing properties are quite helpful. I especially think that young thals could benefit greatly by taking IP6 to help keep their pituitary gland free of iron.

I think B Complex has an important role, as there is a high turnover of nutrients in thals from the overactive bone marrow activity. I do think folate and B-12 should be supplemented beyond what is found in a B Complex supplement.
Andy

All we are saying is give thals a chance.

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Offline Lokkhi maa

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Re: The Goal For Thalassemia Patients Today...
« Reply #46 on: November 03, 2016, 05:47:26 AM »

Hello Andy,

My 3 yrs old babies ferrittin is now 1874.She is taking daily 125 mg Vit C.Is it safe or not?Taking other supplements also Vit E, Zinc, B complex and Folic acid.

Please advice
Lokkhi Maa

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Offline Andy Battaglia

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Re: The Goal For Thalassemia Patients Today...
« Reply #47 on: November 03, 2016, 07:36:36 PM »
That amount of vitamin C is safe, but don't give her any higher dose until she is bigger.
Andy

All we are saying is give thals a chance.

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Offline Lokkhi maa

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Re: The Goal For Thalassemia Patients Today...
« Reply #48 on: November 05, 2016, 07:22:47 AM »

Thanks Andy :)
Lokkhi Maa

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Offline aus

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Re: The Goal For Thalassemia Patients Today...
« Reply #49 on: October 07, 2020, 03:22:15 PM »
Hi everyone,

I am Jia’s mother. In Perth, Western Australia, we have changed from exjade to Jadenu A few months ago. I have a few of exjade pills left. They are mainly 500 g pills. It would be ashamed to throw them out. Is anyone still taking exjade? Can I send them to someone.

Regards

Hooi
hooi@nw.com.au
61 402910884

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Offline Andy Battaglia

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Re: The Goal For Thalassemia Patients Today...
« Reply #50 on: October 26, 2020, 09:36:28 PM »
If it's only a small amount, it may not be cost effective to mail outside the country. Postal rates have gotten ridiculous.
Andy

All we are saying is give thals a chance.

Re: The Goal For Thalassemia Patients Today...
« Reply #51 on: March 23, 2021, 08:37:43 AM »
Doctors here at a hospital in Pakistan are fine with HB 9 but they do not transfuse at 10. I usually take my kid for transfusion whenever it get slightly below 10.. such as 9.8 or 9.6 and sometimes it get fell as low as 9.2.  Is this an optimal transfusion?

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Offline Andy Battaglia

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Re: The Goal For Thalassemia Patients Today...
« Reply #52 on: May 03, 2021, 08:56:02 PM »
Kaleem,

It's close enough to 10 to be optimal and is a good strategy if they won't transfuse at 10.
Andy

All we are saying is give thals a chance.

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Offline vampirebaby

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Re: The Goal For Thalassemia Patients Today...
« Reply #53 on: October 19, 2021, 02:50:58 AM »
Hello,

Are the IP6 tablets large or easy to swallow? This is for my 11 year old who prefers tablets over the drink.

Thanks!

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Offline vampirebaby

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Re: The Goal For Thalassemia Patients Today...
« Reply #54 on: October 19, 2021, 02:56:34 AM »
Also, what’s the dosage for a 25kg person? Should I start my daughter on 1 capsule a day?

 

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