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61
Thalassemia Minor / Re: Help with test results please
« Last post by Andy Battaglia on January 07, 2023, 08:17:59 PM »
When a hemoglobin electrophoresis test is done, it gives the breakdowns of the types of Hemoglobin one has. A non-thal will have mostly HbA and small amounts of HbA2 and HbF. HbA2 is normally raised in thal minors and is used to diagnose the condition.
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Diet, Nutrition and Supplements / Re: l-methylfolate
« Last post by Andy Battaglia on January 07, 2023, 08:15:22 PM »
I use Life Extension folate. I also use their magnesium.
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Iron Chelation Corner / Re: Less (Fe) is more (Hb) in SCA
« Last post by Andy Battaglia on January 07, 2023, 08:14:24 PM »
Since iron builds in the body over time and is not easily reduced, I feel we should always use caution when taking added iron. I do not think a high iron diet is appropriate for most people, as iron can cause many problems, as a person ages. Iron contributes to cancers, as well, so keeping iron in a normal range should always be the goal.
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Iron Chelation Corner / Re: Urine red colour
« Last post by Andy Battaglia on January 07, 2023, 08:11:50 PM »
Chelators remove iron through urine and/or feces, depending on the chelator. Iron turns urine red to orange. It is normal and necessary when taking a cheltor that removes iron through urine. Even chelators that remove iron primarily through feces can also remove some iron through urine. The darker the urine, the more iron that is being removed.
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Diet, Nutrition and Supplements / Re: l-methylfolate
« Last post by Andy Battaglia on January 07, 2023, 08:09:07 PM »
Yes, large doses are only recommended if it is L-methylfolate, as the body cannot process large amounts of folic acid. For reference, I am taking 8000 mcg daily to combat the fatigue I get from my bad thyroid. It is the only way I can make it past 4 pm at work.
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Thalassemia Minor / Re: Lactoferrin And Iron During Pregnancy
« Last post by Andy Battaglia on January 07, 2023, 08:07:26 PM »
Lactoferrin is very safe and also can be very helpful. It's best if an iron panel can be done before tkaing iron. Iron is often needed by thal minors during pregnancy, but should only be taken as a supplement when the need is proven.
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Iron Chelation Corner / Re: Start decreasing Fe
« Last post by Andy Battaglia on January 07, 2023, 08:05:24 PM »
Dharmesh,
That is wonderful news! I am so happy that you continue to find the inner strength to do what is necessary to maintain a good life.
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Announcements / Re: My absence
« Last post by Andy Battaglia on January 07, 2023, 08:04:17 PM »
I thank everyone for their thoughts and prayers. I know they do make a difference.
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Thalassemia Minor / Re: Is lots of manual labor detrimental?
« Last post by Andy Battaglia on January 07, 2023, 08:03:26 PM »
And your counts do look like you may be thal minor.
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Thalassemia Major / Re: Luspatercept ??
« Last post by Andy Battaglia on January 07, 2023, 08:01:58 PM »
There is a video of of recent webinar discussing Luspatercept that can be seen at https://www.youtube.com/watch?v=u34iA1z-2pY&ab_channel=ThalassemicsIndia

I assume that it is coming to India and we can hope that it will be made affordable to patients.
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