Discussion Forums > Thalassemia Major
Hb Levels
Manal:
--- Quote ---I think being at 8 and receiving 2 bags is the same as being at 10 and receiving 2 bags. I see the same amount of blood and iron but a different feeling of the body, don't you think?
--- End quote ---
Speaking of iron , when you transfuse at 8 is much worse because you should take in consideration the iron that is absorbed from the gut, so the iron loaded comes from two sources here the gut and the blood itself.
I believe that transfusing on low Hb levels makes one get the disadvantages of non transfusing( high absorption of iron from gut + bone deformity _ low energy level + ......) in addition to the iron from the transfusion itself.
I hope everyone who is on transfusion would maintain a HB of 10
manal
PositiveVibes:
Thank you Laura and Manal for ur post.
It was very clearly explained. in the last months I try to do that - My hb wa 8.8 and I had 2 units of blood than I increased it above 10 and soon after that I went for another transfusion and got another 32 units of blood in order to keep it high. It was ok for the next 2 months and then it was 8.4. In my case it doesnt work very much. That is why I am considering to reduce the time inttervals btw transfusions- instead of 3 to go every 2 weeks and have 2 units.
Last month my hb before trasfusion was 9.2 . I received 3 units of blood. After 21 days my hb level was 8.8. Very disappointed.
Tnx
Take care !
Manal:
Rozitka
--- Quote ---Last month my hb before trasfusion was 9.2 . I received 3 units of blood. After 21 days my hb level was 8.8. Very disappointed.
--- End quote ---
One of my friends here can have a duration of 2 months between transfusions and some other times she hardly finishes 3 weeks and needs another transfusion. The reason was how fresh is the blood. This is an important variable too
manal
Dori:
--- Quote from: Laura on June 14, 2010, 07:51:09 PM ---Hello everybody!
I think I'll change my vote in the poll 'cause I've been talking to my doc and we've change it from 9 to 9,5.
I know is not a big change but it is a step in my way. At least I'm am inside the TIF's recommended levels (9,5 to 10,5 if I remember well)
Well, It's been a little bit hard to convince her but I wouldn't have been able to do it without you all. The fact is that everybody in Spain that I know with Thal are below 8 or below 9 and when I told her that people all over the world was telling me that I should be a little higher, she got surprised, she consulted the rest of Hematologists in the Hospital and they decided to change it in less than an hour!
I think I'll feel better with the change because in the latest years I've been noticing that I start feeling bad when I'm below 9,5/10.
I'll tell you in a few months.
Thanks again!
Laura.
PS: I keep the poll open just in case anyone is in the same situation as me.
--- End quote ---
That is so very, very cool!!!!!!! Congratulations!!! Besos de Holanda, D
PS I had my transfusion last tuesday and my pre transfusional hgb was only 7.4. I won't have a tanking up earlier then 2 July. I only received one bag. Last time it was 7.7, so I fear it will be 7 at the time I'll have my next. I see my doctor 1 July so any ideas/suggestions/thoughts are more than welcome.
II a hgb of 10 gl/dl is here 6.2 mmol/l. I do not know any Dutch person who get a transfusion by that level. It is usually around 5.5mmol/l which is 8.85 gl/dl I might post here, or in a own thread (?) my whole problem later this week, OK?
Dori:
I talked with my doc. I am going back to montly transfusions with two bags. I have an extra transfusion next wednesday with one bag. On the way back I start thinking that two would be better and I just organised that. My pre transfusion hgb at Tuesday was 4.7mmol/ (7.5gl/dl) but i was dehydrated. Therefore it should be lower and even more lower 72hrs later. As for the monthly transfusions I told my doctor that I want to have my pretransfusion at 6mmol/l. As for me this is not common, but I am listen very well to you all. 6mmol/l is 9,66gl/dl. That is like your standards, right?
The above new treatment can have a bad outcome on my ferritin levels. But I have decided that quality of life is better than concentrate on those levels. I take 2x 750mg Exjade. If you have any thoughts on the transfusion scheme or new fe problem, please let me low.
Thank you very much,
Dore
ps we got tropical weather here. It is now already 25C and it is expect to be 37C today!! Very unusual for Dutchies! And there is that football match today ;)
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