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55477 Posts in 5941 Topics by 6282 Members
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 1 
 on: May 06, 2021, 07:02:12 AM 
Started by Dharmesh - Last post by dahlsi
Hi Dharmesh,

It's interesting to hear you tell this story - as this is exactly how I ended up finding out about my Thalassemia minor!

Of course, I wasn't actually diagnosed at the time - but it's what led doctors to realise that I had consistently low haemoglobin levels. I was told that I could never donate blood again...

Having said that, maybe after following the nutritional advice provided on this website - you may have better luck than me.

Let us know how you go. Good luck!

Cheers, Dalia




 2 
 on: May 06, 2021, 06:53:39 AM 
Started by Andy Battaglia - Last post by dahlsi
Hi Andy,

Thanks so much for your reply, and I couldn’t agree more! In my life experience, all doctors ever told me to do for my thalassemia minor was to ‘take iron supplements’ and ‘eat red meat’. I have never been iron deficient, so this advice was actually harmful for me. 

I do not blame the doctors themselves though, more their training. It’s a real gap that doctors are not taught enough about nutrition and the important of diet for maintaining good health as part of their medical training. This might help to explain why they don’t (or can’t) offer much useful nutritional advice to patients, especially thalassemia ones!

All the information I’ve gained about the additional nutritional needs caused by thalassemia has either come from this website, doing my own research or speaking to ‘alternative’ health practitioners such as acupuncturists and yoga instructors. That’s why this website and the missing information you provide is so vital!

Thanks so much again, and keep up the great work Andy!

Cheers, Dalia


 3 
 on: May 03, 2021, 09:15:19 PM 
Started by Dharmesh - Last post by Andy Battaglia
Hi Dharmesh,

The thing that has the best reports for raising Hb is taking vitamin B-12 and L-methylfolate together. I would suggest 5 mg of each daily. Wheatgrass tablets may also help and have aided my wife during cancer treatments.

 4 
 on: May 03, 2021, 09:11:57 PM 
Started by Andy Battaglia - Last post by Andy Battaglia
SandsofTime,

HbF has a higher affinity for oxygen than HbA, which means it doesn't let go of the oxygen it carries as easily as HbA does, so that does often result in more fatigue in thal minors.

The vitamin D is great and FYI, I, a non-thal, take 50,000 IU once weekly. It sounds high but is not and has finally got me past winter depression. As I've gotten older, I found myself still having trouble making it through the day and wanting to leave work a couple hours early. After hearing thal minors tell me how much folate improved their energy levels, I added 5 mg L-methylfolate daily. I already take 5 mg B-12 daily. Now, I am making  it through the day without feeling so fatigued in the late afternoons. The thal minors were right. L-methylfolate can really help.

 5 
 on: May 03, 2021, 09:05:15 PM 
Started by Andy Battaglia - Last post by Andy Battaglia
l always say keep dosing within reason. People ask me how much to take and I usually tell them to follow the instructions on the labels.  I also split up the supplements and don't take them all at the same time. And I cannot overemphasize the importance of hydration in keeping your organs in good shape.

 6 
 on: May 03, 2021, 09:02:24 PM 
Started by dahlsi - Last post by Andy Battaglia
Dalia,

Thank you for adding to our knowledge about what helps people with thalassemia. Much of this will also benefit non-thals.

 7 
 on: May 03, 2021, 09:00:45 PM 
Started by Andy Battaglia - Last post by Andy Battaglia
Dalia,
I am happy the recommendations are helping. It's tough to get doctors to pay attention to the additional nutritional needs caused by thalassemia, so much of my focus all along has been to help provide the missing information. much of it gathered from the experiences of people like yourself.

 8 
 on: May 03, 2021, 08:58:11 PM 
Started by Andy Battaglia - Last post by Andy Battaglia
From that article, it does look like, as it is with malaria, that thals are more resistant to covid.

 9 
 on: May 03, 2021, 08:56:02 PM 
Started by Sharmin - Last post by Andy Battaglia
Kaleem,

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

 10 
 on: May 03, 2021, 08:54:35 PM 
Started by Slade - Last post by Andy Battaglia
Slade,
Have you had any other iron tests that would help determine your true iron status? Serum iron and TIBC would be helpful.

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