Discussion Forums > Thalassemia Major

Hb levels

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eesha:
i dont know how u guys manage to have such high HBs, mine usually when i get transfused is 8-9, then i will have 3 bags. If hb is 10 or over they give me 2 bags. I understand the max normal hb is 14 bu i dont think ive ever reache that, after transfusion i am usually 12-13. after the 4 weeks usually its 8-9. Today it was 9.7 and they were going to give me 2 as htey thought it was a good hb but int he end just gave eme 3. I have decent chelation am v compliant consultant is v happy with me and i have my spleen. Im not sure??
i have exjade od 1250g as this is what the consultant said is the approved amount max for my weight of 7st, the said if mt hb goes too much high on exjade he will return me to desferal, so i dont understand as andy u say the dose should be a lot higher.

Tedi:
wow Eesha 3 bags, its too much.
Last months i had 10.0-12.0hb and 2 bags.

Dori:
I had my last tx at thursday with an interval of 2 weeks and 2 days. One bag was given and my next one is at next week thursday. I'd a hgb of only 7.7gl/dl.

Dori:
Hi Laura,
Good luck with your doc meeting. I got mine at the end of June and I got the same questions. Actually I am going to ask to move from 2 weeks 1 bag to 4 weeks 2 bags. I really need to see less hospital in order to feel better. Now I am only 1 week off and the other week I spend one morning and a whole day in H. If everyone knows more questions, send me an private message. I read them but I do not have time to answer them.  Btw, I do understand I need a super transfusion to leave this low hgb. I feel pretty bad.

Laura:
Thanks to everybody.

I think I'll print all your post about this topic and I'll show them to my doctor.

I just hope that my doctor is not going to say me something like "What is good for the rest of people might not be good for you".

Tomorrow I'll ask for a date with her and I'll write to you all again once I have talked to her.

Meanwhile, like Dore, I'm going to ask you for more things you think I'd ought to talk about with my doctor. By the moment, I have to talk about my pretransfusional Hb and about my Hb drop (the antibody reaction Andy was talking about).


Thanks again,

Laura.

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