Discussion Forums > Thalassemia Major
Hb Levels
Laura:
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.
Andy Battaglia:
I think this will work out for the best Laura. You need the higher Hb to feel good and for your overall health.
Treatment strategies change with observation over time, so patients should always make sure their own doctors are keeping up with the changes.
Zaini:
Good job convincing your doctor Laura,if they change the policy for everyone,not only it will help you but it will also help kids in your unit,its necessary to have hb as close to normal range as possible to grow properly.
Zaini.
PositiveVibes:
:clap Laura
How do u manage to have ur hb above 9.5. I have a big problem with keeping my hb high. I think I will nevever be able to have 10 :(
How often do u go for blood transfusions ahd how much blood do u receive.
Here in my country the doctors say u shuld not go less than 3 weeks if u receive 2 units, which in my case means to have hb btw 8-9. They say if u go to regularly you receive much iron and on the other hand you make your body used to much blood which is bad for your organism and yur spleen. I am too confused.
Laura:
Hello!
I take 2 bags every 3 weeks. Well, at least is what I should do. When my levels where at 10-11 (like 10 years ago, until I was 18), I regularly go for the transfusion every 3 weeks without problems. From the moment we changed the level to 9 (10 years ago, as I was saying), I've been trying to mantain this routine but it is not always possible and sometimes I have to get 3 bags or go for my transfusion in 2 weeks time instead of 3.
Well, the point is that in some chemists of Spain you can check the Hb levels. I usually go there when I feel bad, they check my levels and if they're under 9 (well, now under 9,5), I call my doctor and go to the hospital.
About the iron, yes, I agree and I supose everybody would do it. If you get more blood, you get more iron but we depend on blood to live and we can't avoid it. 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?
In general, it is only once that you have to move forward your transfussion. You get your 2 bags at the level you should (9,5, 10 depending on the case) and then you can mantain more or less the level for months.
In my opinion and experience, once you are at your ideal level the amount of bags should be the same as now. I mean, If you take 2 bags every 3 weeks at 8 and it works mantaining your routine (you don't need extra bags) then, once you're at 10, the same routine should work; so I think you could manage it with an extra transfussion when you're at 10.
That's my personal theory about Hb levels. My doctor doesn't share it with me. She thinks the same as yours but, as she has agreed to move the level from 9 to 9.5 now we're waiting for my Hb to be at 9,5 to move forward the transfussion. As I was saying, It is supposed to be only once so there's no going to be a high increase of the iron.
I hope I meant well cause it is a difficult personal theory to explain. Such a difficult theory that I have never had the courage to tell my doctor about it.
Hope everything will be ok with you Rozitka and you'll manage to convince your doctor to move your level to 10.
Best regards,
Laura.
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