Discussion Forums > Thalassemia Major
maintaining hb levels
Emby:
hello again...
please andy i was wondering if you could help. my older son has now been receiving less blood than before for almost three months now. his hb was 9.4 may, 8.3 on 5th june, and 25th june
7.8. he is due for a blood transfusion saturday 4 july. i know his hb is low and i spoke to his consultant about this. she seems to want to continue with her formula for the amount of blood my son has (desired hb 13 - actual hb x body weight kilograms x 3). she told me it could be a viral thing (he has not been sick) and something about heamocrit (sorry about spelling). can you explain to me something about this and how can he maintain his hb at 9.5. his hb was dropping even with formula of desired hb 14 being used:
oct 2007 hb 9.7
nov 07 hb 7.8
dec 07 8.8
dec 07 9.5
jan 08 9.9
feb 08 10.2
march 08 9.6
april 08 8.6
may 08 8.3
june 08 8.4
july 08 9.2
july 08 8.6
august 08 not recorded!
sept 08 9.6
oct 08 8.8
nov 08 8.4
dec 08 8.7
jan 09 10.3
feb 09 8.4
march 09 8.9
april 09 9.8
what would you say i need to look at. also if he has regular blood transfusion of 4 or even 5 units of blood every month (about 1000mls - 1250mls) would this be not good? as i have mentioned before his ferritin is 257 at present and he is on desferal and ferriprox because of alot of iron around heart (from t2 scan). he had an oppointment with endicronologist (spelt wrong again!?!)
and his vit d level was significantly low so he is taking calcium sandoz 5ml twice daily and ergocalciferol solution 3.3mls once daily for 28 days then once weekly till next appointment, 3 months time.
he also had dexa scan and awaiting result.
he is not feeling particularly tired with low hb and continues with physical activities (loves football !).
look forward to hearing from you
emby
Emby:
oops....should be ''maintaining'' hb levels....sorry !
Andy Battaglia:
Hi Emby,
Perhaps your consultant is unaware of the updated guidelines for treatment of thalassemia in the UK that were released in 2008. If not, please show this to her. If she continues to insist on maintaining a lower Hb level, please contact Emma Prescott at Whittington hospital. I will send you her email address in a PM. She should be able to help you.
Dr. Farrah Shah, Specialist (Thalassemia Physician)
Emma Prescott, Specialist (Thalassemia Nurse)
The Thalassemia Clinic, Mercers Ward
Whittington Hospital NHS Trust
Highgate Hill, London, N19 5NF
Phone Number
02072723070
http://www.ukts.org/pdfs/awareness/ukts-standards-2008.pdf
--- Quote ---6.2 Standard
• Haemoglobin levels should be maintained
above 9.5-10g/dl.
--- End quote ---
I agree completely about maintaining a higher Hb level because it has been proven that the closer to normal Hb that can be maintained, the fewer overall problems patients will have.
Emby:
thank you andy.....
maha:
Hi Emby
Are your boys taking vit E? It really made a difference in my son`s pre tx hb. For more than a year his pre tx hb was hovering between 8 - 9 gm/dl. Its five months since I started him on 100IU vit E( natural mixed tocopherols) and the last four months his hb has been over 9.6 ( twice over 10) with the same volume of blood ie about 15ml/kg.
maha
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