Discussion Forums > Thalassemia Major

Hb levels

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PositiveVibes:
Hi ! I just want to open a very usual topic- about the normal hemoglobin levels in thalassemia major patients. Recently, I observe that my hb is very low before transfusion. When I was a child, almost 2--3 years ago, I used to have hb btw 9 and 10, even more ... however, things are quite different now.... I can't keep my hb at good level and I'm very concerned about that. Yesterday I was at the hospital to have transfusion and it was mu 20th day from the last one and my hb was 8.2... it's quite low for me and what is even worse- I feel it, I'm very tired and apathic:( Usually I go at the 3rd week of my trasfusion and have 2 sacks of blood with about 260-270 ml each. I am 57 kg. Do you have any suggestions about increasing my hb ?

Sharmin:
Hi Rozitka,

It seems that you are receiving 10cc/kg of blood every 3 weeks -   the recommendation in Oakland is 14 - 16cc/kg every 4 weeks.  Since you are transfusing sooner the smaller volume should be okay but I don't know what the standard is for 3 weeks.  Your pretransfusion hg should be around 95.  Perhaps next time your doctor can transfuse you a little sooner - (2weeks) and then you can continue transfusing every 3 weeks again.  Sometimes if you fall behind you just need to catch up. 

I hope that this helps.  Supplements such as nigella, wheatgrass, carao and others should be helpful as well. 

Sharmin

Zaini:
Rotika,

I think you should try carao,it might help you.

Zaini.

PositiveVibes:
Yes, Sharmin I will go to have tranfusion in 6-7 days again (total 10 days) and I hope I will be able to raise my hb and then proceed with the redular period of transfusions. Actually, I should have mentioned that  I still have my spleen, my doctor says it may be due to it that I keep the lower hb levels recently, However, it is not enlarged and the thrombocytes are in the norms which I know are the main indicators for spleen disorder.

maha:
Hi Rozitka
Presently you seem to be getting less than 10cc/kg. Usually those who transfuse 3 weekly recieve 12cc/kg , which means you should be getting a good 150cc more. If you are able to maintain even a hb of 8 with this amount then your spleen is in a very good condition. Have you gained weight recently? Blood volume has to be adjusted to weight accordingly.

take care
maha

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