Hb levels

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.

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

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.

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.

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.

Tedi im confused, why do u say that 3 bag is too much? i get transfused every 4 weeks. Waleed says his hb always stays 17 so im conufused, why do u think i have too much. and in the other posts about speed of transfusion a lot of people were talking about having 3 bags in 1 go. im confused??

Eesha, you should be taking 15ml of blood for every kilo (your weight)

manal

hI,Eesha i never ger more than 2 bags, because of that i told it.
I have transfusion every 30days with 2 bags, sometimes 1bag-depends.
Yesterday i hav trans. with 2 bags- hb level before trans. was 91.0
 

Hey ya ! Does anyone can tell me how much blood I need to get in order to keep my hb btw 9-9.5. I am 61 kg and usually have 2 units of 280-300 ml . Unfortunately my hb level is btw 8-9 . I don't know wat t do in order to keep it higher. I am taking IP6 , Folic Acid and other vitamins but stil there is no help.

I am wondering if i receive the necessary amount of blood and do i need to reduce the time interval btw bt.

I have also read that it is recommended to take L-carnitine as it helps to prolong the life of eretrocytes. What is the dose and how to take it ?
Thank you
Rozalina

Hi Rozalina


Concerning transfusion, you should be taking 15ml of blood per kilo, so this means you are taking a small quantity

As for L-carnitine, it can be taken from 50 to 100mg per kilo. But all the studies done using L-carnitine in the field of thal used 50mg per kilo. So according to your weight, you should take 3050mg per day divided into three doses

Manal

Hi Manal  ! I used to study and live in the UK this year and while I was there it was possible for me to get 3 units of blood.
However during summer I will be staying in my country where you cannot receive more than 2 units. The only solution to increase my hb is to reduce the time interval btw transfusions.

As far as L-carnitine is concerned I am starting it these days. What do u think about it ? Any help ? Should it be in the form of pills/tablets or syrup. Before or after the meal?

Thank you a lot!
Best Regards!

Hi Rozitka

Yes L- carnitine does help. Not only as an antioxidant and muscle strengther, but it also can increase the time between transfusion in some patients. It can be in any form. I have friends that take the L-carnitine of GNC and they are satisfied with it.

You can take it before or after the meals, as you like, but in my opinion i believe that any thing is better taken after meals unless the opposite is specified.

Here are some links discussing the importance of L-carnitine to thals


Improvement of Cardiac Function in Thalassemia major Treated with L-Carnitine
http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowAbstract&ArtikelNr=76522&Ausgabe=229926&ProduktNr=223829

Assessment of Puberty in Relation to L-carnitine and Hormonal Replacement Therapy in {beta}-thalassemic Patients. http://lib.bioinfo.pl/auth:El%20Beshlawy,A

Apoptosis in Thalassemia major Reduced by a Butyrate Derivative
http://content.karger.com/ProdukteDB/produkte.asp?Doi=87890


Diastolic Dysfunction and Pulmonary Hypertension in Sickle Cell Anemia: Is There a Role for L-Carnitine Treatment?http://content.karger.com/ProdukteDB/produkte.asp?Doi=89472

Pulmonary hypertension in beta-thalassemia major and the role of L-carnitine therapy.
http://www.ncbi.nlm.nih.gov/pubmed/19065439?dopt=Abstract

Hope this helps

manal


 

Last week my pre transfusion was only 7,4 gl/dl. I am not even try to describe the dilemma I am in. Fact is that I will try to solve this issue completely before I leave on vacation to very rural France. The other fact is that I need a better transfusion scheme. I won't have my next transfusion until the second of July.