Discussion Forums > Thalassemia Major

Maintaining HB at 9

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Apollo:
So the current guidelines for thalassemia recommends to maintain a 9 HB. I go for transfusions every three weeks and by the time I am due I usually fall right under 8. It doesn't really affect me, and I can still workout that last week. Perhaps I am used to it by now. However, I am 19 and I don't know if I am fully grown. I was wondering if by allowing such a low hb, am I hurting my growth. Both height and muscle wise? What are some complications of having such a low hb.
I am also hesitant to switch the frequency because I don't want anymore unnecessary iron.

Thanks in advance

Zaini:
Hi,

How long have you been following the same schedule of transfusion,if it hasn't hindered your growth yet it shouldn't do so now,being said that,i don't think that keeping that low hb is a very good idea,because chronic low hb does damage your body in the long run,i know you are worried about unnecessary iron but when your hb is that low,your body absorbs more iron through the gut,low hb means low oxygen levels in blood and since you work out too,it made me think what if those last week work outs force your heart to work harder with low oxygen,BUT I am no doctor, its just my personal opinion so i think a hematologist might be able to help you more.

Zaini.

P.S whats your weight and how much blood do you take every three weeks?

Apollo:
I receive two full bags of blood. It varies but it's usually 600-650, not sure what the unit of measure is. They do  something like 15xkg to determine max.

I'm 57-58 kg. I understand what you are saying about the extra heart strain, somehow my heart rate never gets above 120 even with my heavy workouts. So that's what I go by to make sure I'm not overdoing it.

Also, can bone marrow deformities happen to someone who is no longer a child?
Wouldn't taking hydroxyurea prevent this, and actually benefit from the increased bone marrow function?

Btw, I think it's stunning growth because  grown but my bones, feet, and hands are pretty small. Also I haven't had a real growth spurt. I'm not too short so I'm not too worried, I just think that the reason my hb goes low so fast is that I am using it for growth, the doctor mentioned this when I was younger.

Thanks for the response btw.

Zaini:
Apollo,

You are not getting enough blood,according to your weight it should be around 850-870,meaning more then 2 bags,coz two bags are usually around 600 some of which remains in the tubing and all,so i think if you increase the quantity you might be able to give your hb a boost.

I don't know if bone deformities can occur in adults,but i'll assume that extra pressure on bone marrow might weaken the bones,and yes we have members who take hydroxyurea along with their transfusions,and that has helped them to increase intervals between their transfusions,but keep in mind,that hydroxyurea works differently for everyone.

Zaini.

Andy Battaglia:
Apollo,

You should try to get your Hb up higher and keep it above 9. It won't really result in a significant added iron load, because once you are at the higher level, it shouldn't take any more blood than normal per transfusion to maintain that level. Low Hb can definitely affect muscle growth, as adequate oxygen to the muscles is necessary for growth. You've mentioned pale stool while using Exjade. This is a common side effect of Exjade. Are your liver values being checked at least once per month? One thing you might consider is splitting the Exjade dose into two and taking half in morning and half in evening. This may help reduce the side effects, while actually giving you a true 24 hour chelation period.

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