Hb Levels

Hello!

As you know, I have a little problem with my pre-transfusional Hb levels and I'm trying to know a little bit more about which are the levels of the rest of you.

I'll use this poll when I talk to my doctor to ask her an "upgrade" of my level.

Thank you all for your participation.

Kind regards,

Laura.

Laura,


It's really what the rule is more than which is our personal pretransfusional level and the rule is not to let your hb drop below 10.

Lena

Mine is not under 10.0

Unfortunatly, patients who depend on free treatment that is paid by the goverment don't transfuse until they reach below 6.  that is why i find a lot of thals here that have facial deformity and alwyas wondered why they have this deformity though they are transfusing while other patients whom i met in abroad conferences don't have such deformity. .....That was the reason

If you want to maintain a level of 10 and above, you had to pay for private transfusion which is really so expensive.

As long as there is no awarenss of how donating blood is so important, this problem will not be solved

manal

above 10.5 is my ideal Hb level that i want to maintain .... and always try to get transfusion bfore lleting hb down to 10 ...  i think , 10.5-11 is right level ..

Umair

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.

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.

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.

  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.

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.

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?

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

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 !

Rozitka

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.

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

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.

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?

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 ;)