Thalassemia Patients and Friends
Discussion Forums => Thalassemia Intermedia => Topic started by: sn196 on October 20, 2011, 01:33:04 PM
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Hi all. I have the HBh blood disorde tge r and would like to buy folic acid tablets as I have run out. By mistake,i threw box away so unsure of the dosage. I have found 400 and 800 micro grams. Which would be recommended?
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At least 800 mcg daily. 2000 would be a good dose for HbH.
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Hi sn196,
my 3 years old son (adopted from china) it is HbH disease.
I would like to know something about this disorder like you know.
Are you need trasfusion? How many times?
What kind of life do you live with this disease????
Thank's in advance
Pino
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Leonardo,
I live a very normal life. Thankfully I have never required a blood transfusion. At a young age I use to have regular blood tests at my local hospital to check my hbh levels I presume. I was also prescribed folic acid by my gp to take daily. This all stopped at the agr of 16 I think. I wasnt really fully aware of my blood dissorder until I got married and was advised by my parents to both havr a blood test as if my wife had thal there would be a chance of our children having thal major. Thankfully I now have 2 beautiful children. The only thing that I do notice is that I get easily tired and go very pale when I,am. Other than that I am fit and healthy.
only
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Thank's for your reply,
then your hb level it is was ever more of 8/9 ? Or less?
My son tomorow morning he'll do second trasfusion....the hb level is 7.2 after 1,5 month from firts trasfusion..... :(
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Andy.....ours doctors have suggested a folic acid about 500 mcg 3 times a week ...(????)
Do you confirm a 2000 mcg daily ???
In your opinion... why this big difference about dosage ?
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Leonardo,
The Standard of Care guidelines suggest 1 mg daily, with an upward safe limit daily of 10 mg (10,000 mcg) for adults. That is a very large upward limit, so you can see there is no harm in taking 2000 mcg daily. The difference in recommendation is most likely because there is so little information about treating alpha thalassemia. I feel your doctors are advising an amount consistent with non-thals, and they are not recognizing the additional needs of a thalassemic.
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Hi Andy
I think Leonardo talking about 3 year old child.
Regards
Catherine
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Oh yes Catherine, I do realize that we're talking about a 3 year old. I mention adult thresholds because levels for children are seldom, if ever established. Generally with children, depending on age and body weight, figure doses at 25-50% of the adult dose. With a water soluble vitamin, doses can be more towards the 50% range because they wash out of the body so quickly.
For Leonardo, though I would suggest daily folic acid, but the dose of 2000 that I mention is in relation to adults. The dose recommended by the doctors of 500 is good but I would suggest daily because his Hb has been dropping so low.
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I have taken 5mg since I was 8 years old. I am still on it, for the most part. I do not stick with my folic like I should.
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my Doctors at the thal clinic in Toronto took me off Folic Acid earlier this year...they said it didnt do anything..not sure whats true or not..thoughts?
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Because folic acid is essential for building red blood cells, the Standards of Care Guidelines for Thalassemia recommend 1 mg daily folic acid for non-transfusing patients. I have heard some debate on the usefulness of folic acid for transfusing patients, I have never heard anyone suggest that non-transfusing patients don't benefit from folic acid.
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Thanks Andy..I think Ill go bqck on 5mg a day :)