Discussion Forums > Thalassemia Major
Hb levels
Andy Battaglia:
Hi Laura,
Most thal specialists will now agree with what Lena has said. Current treatment standards recognize that low Hb leads to low oxygen levels, which cause many problems long term. It is now recommended that transfusions be given when the Hb is no lower than the 9-9.5 range (this will vary slightly from thal center to thal center, but the lowest Hb before transfusion used by most centers is 9). With modern chelation, it is a better practice to maintain a high Hb and give thal patients a better quality of life, but chelation compliance is absolutely required. What is your current chelation routine?
Zaini:
--- Quote from: Laura on May 26, 2010, 07:23:04 PM ---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.
--- End quote ---
One more thing,the lower your hb is,the more iron your body absorbs through the gut,so how is this helping your iron overload anyway,your doctor should revise your transfusion schedule.
Zaini.
Dori:
Mine was two days before transfusion time 4.8ml/l. That is, keep breathing,in gl/dl 7.7
:$
Laura:
Hello!
I'm encouraging myself to talk to my doctor about my Hb levels and I really appreciate your help.
About my chelation routine... It is changing now. Until one month ago, I took 3 exjade of 500 and 3 of 125 a day, 3 weeks ago, we changed it to 4 exjade of 500 and 2 of 125. And now, since Monday, I take 5 of 500 because my ferritine had gone up from 2400 to 3200 in two weeks.
About the Hb level, I would be very happy if I could reach to be between 9 and 9,5 since it is at that point when I sart feeling very bad. The problem is that I keep my Hb quite high during the period between transfusions but I usually have a drastic drop of Hb. For example, last week I had an analysis on Thursday and I had 10.4 and on Monday I had 8,6. This makes the fact of having my first transfusion at 9 or 9,5 a little difficult but I'm sure that if I wait for the day that my Hb is in that range I'll be able change my transfusion routine.
I'll tell you about it when I have talked to my doctor.
Thanks again for everything,
Laura.
Andy Battaglia:
Hi Laura,
Your current dose should do the job. You were taking a bit less than needed when you were taking 3 exjade of 500 and 3 of 125 a day [1875 mg daily]. Your dose should be at least 2150 mg daily, and taking the higher dose of 2500 will help to lower your ferritin more quickly. This is also good if you choose to transfuse more frequently. I am concerned about your quick drop in Hb. Do you know if this is an antibody reaction from the transfusions? This should be checked out and if needed, a course of prednisone should be started.
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