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Thalassemia Minor / Re: Blood work for my son
« Last post by TonyF on October 06, 2023, 01:43:50 AM »

Make sure he gets sunshine a few times a week at least in the summer, natural vitamin D formed from sunlight is way better than supplemental D(thought thats better than nothing).

Also supplement with some folate(not folic acid).

What does his diet look like? Id ensure he eats high nutrient dense foods and enough protein daily.
red meat regularly, eggs, other proteins too.
Also liver and or shellfish once per week as those have super high nutrient density including iron.
Milk or yoghurt too if milk products isnt an issue.


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If the diet does not include high amounts of meat, I see no reason to regularly monitor iron in thal minors. As with all of us, it should be tested annually to make sure the iron level is in range and not too high or low.

hi Andy,

Regarding monitoring iron levels every year, could you kindly comment on my son's blood work on this post ?

https://www.thalassemiapatientsandfriends.com/index.php/topic,6181.0.html

We REALLY need to help with more growth.

Thank you!!
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Thalassemia Minor / Re: Blood work for my son
« Last post by VB on September 24, 2023, 05:49:10 PM »
Hi Andy, kindly share your comments on this post as well. I've included blood work results. My almost 12 year old son's main goal is more bone growth and putting on more weight.

Some parents in similar situation (non-thal minor) are doing Human Growth hormone injections. Some also worked on better gut health and digestion.

Is any more blood work needed for TIBC and Iron ? Should we add more Iron rich foods ?

Thank you!
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Working Towards a Cure / Re: US FDA Approves ZYNTEGLO® (betibeglogene autotemcel)
« Last post by wario on September 15, 2023, 06:04:34 PM »
I am also interested in talking with someone who has had this treatment or is currently in the process. I have been told by my doctors that I am on the list for getting this but I have a few questions. Please let me know if you have some time to talk.
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Thalassemia Minor / Re: Alpha Minor and Oxidative Drugs/
« Last post by Andy Battaglia on September 09, 2023, 09:27:46 PM »
Yes, alpha minors can react to certain substances that can cause hemolysis and cause the hemoglobin level to suddenly drop.
For more information, you can refer to the post at https://www.thalassemiapatientsandfriends.com/index.php/topic,3410.0.html
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You may have trouble getting coverage in Australia. You could try contacting the Thalassaemia and Sickle Cell Australia (TASCA) for more information at https://www.tasca.org.au/contact-us/at
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Thalassemia Major / Re: Luspatercept ??
« Last post by Andy Battaglia on September 09, 2023, 08:11:11 PM »
This is the same drug as Luspatercept, which has been used with some success by many US patients. It does not suit everyone or work for everyone, but it is definitely worth trying to see if it can help individual patients maintain a higher Hb level and reduce their transfusion needs.
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If the diet does not include high amounts of meat, I see no reason to regularly monitor iron in thal minors. As with all of us, it should be tested annually to make sure the iron level is in range and not too high or low.
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What I would point out is that all humans need iron, and that there are many thal minors with iron deficiency, more commonly in females than males. Iron from veg foods is not well absorbed, and no more than 40% of the available iron is absorbed, as opposed to the very high percentage of iron that is absorbed form meat. I never advise avoiding most veg sources of iron.
Both carnitine and arginine have very similar properties and both can help fix nitric oxide in the body. This is extremely important to the health of the circulatory system.
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Thalassemia Minor / Re: Iron-rich foods for thal minor
« Last post by Andy Battaglia on September 09, 2023, 07:36:09 PM »
It is not actually very high in iron. 1.6 mg per 100 grams of Bael. Thal minors do need iron in their diets, so it should not be avoided completely.
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