Discussion Forums > Thalassemia Major
Clenbuterol and ways to deal with low HB
Nomad:
That's true. I think it would be the best "dosage" but if I imagine the veins getting stitched every week, oh boy!!
It is and will always be an unsolved problem!
Low Hb, bigger heart beat, more extra medullary erythropoesys, more lower back pain and higher temperature...
Higher Hb, to much for the heart, to much iron and to much stress for the body...
So one more question, is it actually a bad idea for someone to stay at a low Hb, meaning 8,6 before transfusion and about 10+ after, if he has learned to deal with this??
Andy Battaglia:
Your heart never learns to deal with low Hb. It causes the heart to work harder to supply oxygen throughout the body. In the long run, this is something to be avoided when possible. The top thal docs in the US want Hb kept above 10 at all times.
Nomad:
Well, then I m doomed!! :wah :wah
I have tried several times to explain them exactly this point... the only answere I always get is "this would only cause an iron load, you would only hemolise faster, or my favorite, MDS (myellodysplasia) patients have also to deal with lower HB and they are doin fine... :dunno
Andy Battaglia:
It is very frustrating because doctors are ignoring the process taking place in the human body. When the Hb drops below 10, an increase in bone marrow activity takes place. In thals, this means more defective red blood cells are produced. Keeping the Hb high prevents this ineffective erythropoiesis, which is the stated goal of transfusion. By not keeping the Hb high enough, the purpose of transfusion is countered. Higher Hb is not bad for the heart and the added iron can be dealt with by chelation. That is the modern approach to transfusion and chelation and doctors need to be aware of the purpose of transfusion in the first place.
This is from the SOC and doctors need to be fully aware of the twofold purpose of transfusion.
--- Quote ---The purpose of transfusion is twofold: to improve the anemia and to suppress the
ineffective erythropoiesis.
--- End quote ---
Ineffective erythropoiesis can only be suppressed by maintaining a sufficient Hb level.
Dori:
Nomad,
Be sure they address your problems NOW. Keep talking and talking and otherwise find yourself a new doctor. I know thals in Germany getting transfused by 9 or 10 gl/dl These hematologists exist. Maybe you can find one of these hematologists and get your transfusion treatment somewhere else (more local)?
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