Discussion Forums > Thalassemia Major

Hb levels

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Manal:
Dore, did you get any explainations from doctors???

manal

Dori:
Nom they never give their opinion about it. Just that it is good, not more. Did someone else experience this?

Laura:
Hello,

Hemoglobine is a discussion I never dare to have with my doctor. I go to hospital every 3 weeks and I have 2 bags from 270 to 300cc. I am 27 and I weight 71kg.

My doctos sais I have to be below 9 because my ferritine is very high.

The theory I have is that if I'm getting 2 bags every 3 weeks either way, it doesn't matter if I have them when my Hb is 9 or when it is 9.5 or 10.

I know from you and from TIF that Hb should be always over 9 but it seems impossible for my doctor to "accept" that.

Should I ask my doctor to "upgrade" my hb level?

Thanks a lot,

Laura.

Lena:
Hi Laura,


your  Hb must always be over 10, from 10 to 11, no matter what your ferritin level  is. In fact, it is totally irrelevant. The modern theory  is: Hb over 10 and ferritin as low as possible, definitely below 500.
 Let's say that after three weeks you present yourself with Hb 8...will your doctor still transfuse you with 2 blood bags?  :huh
Your doctor should concern to help you lower your ferritin, not your Hb.

Lena.

Laura:
Hi!

Thanks for your response Lena.

Well, in the case that I'm below 8Hb then I get 3 bags but I have to ask for it.

If you have the information, I'd like you all to tell me if this "modern theory" that you mention has been developed or passed on in any congress.

Thank you all,

Laura.

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