Hb levels

Hi ! I just want to open a very usual topic- about the normal hemoglobin levels in thalassemia major patients. Recently, I observe that my hb is very low before transfusion. When I was a child, almost 2--3 years ago, I used to have hb btw 9 and 10, even more ... however, things are quite different now.... I can't keep my hb at good level and I'm very concerned about that. Yesterday I was at the hospital to have transfusion and it was mu 20th day from the last one and my hb was 8.2... it's quite low for me and what is even worse- I feel it, I'm very tired and apathic:( Usually I go at the 3rd week of my trasfusion and have 2 sacks of blood with about 260-270 ml each. I am 57 kg. Do you have any suggestions about increasing my hb ?

Hi Rozitka,

It seems that you are receiving 10cc/kg of blood every 3 weeks -   the recommendation in Oakland is 14 - 16cc/kg every 4 weeks.  Since you are transfusing sooner the smaller volume should be okay but I don't know what the standard is for 3 weeks.  Your pretransfusion hg should be around 95.  Perhaps next time your doctor can transfuse you a little sooner - (2weeks) and then you can continue transfusing every 3 weeks again.  Sometimes if you fall behind you just need to catch up. 

I hope that this helps.  Supplements such as nigella, wheatgrass, carao and others should be helpful as well. 

Sharmin

Rotika,

I think you should try carao,it might help you.

Zaini.

Yes, Sharmin I will go to have tranfusion in 6-7 days again (total 10 days) and I hope I will be able to raise my hb and then proceed with the redular period of transfusions. Actually, I should have mentioned that  I still have my spleen, my doctor says it may be due to it that I keep the lower hb levels recently, However, it is not enlarged and the thrombocytes are in the norms which I know are the main indicators for spleen disorder.

Hi Rozitka
Presently you seem to be getting less than 10cc/kg. Usually those who transfuse 3 weekly recieve 12cc/kg , which means you should be getting a good 150cc more. If you are able to maintain even a hb of 8 with this amount then your spleen is in a very good condition. Have you gained weight recently? Blood volume has to be adjusted to weight accordingly.

take care
maha

Rozitka,

Doctors in Oakland suggest that they recommend not removing the spleen if possible.  I think that transfusing sooner once and perhaps increasing your tx volume slightly will resolve your problem.  Keeping your hg above 90 also prevents the spleen from growing. 

Have you had a coombs test to determine if antibodies are present?  I don't think that you have antibodies because you hg drop is not drastic.  I think that the supplements will be most helpful to you - folic acid, carao, nigella - these supplements protect red blood cells and keep them healthy longer.

Sharmin

the recommendation in Oakland is 14 - 16cc/kg every 4 weeks.  Since you are transfusing sooner the smaller volume should be okay but I don't know what the standard is for 3 weeks.

Rozitka,

15 cc/kg every 4 weeks comes out to be roughly 11.25 cc/kg every 3 weeks. You are getting less blood per your weight. I would increase the volume to at least about 625-650 CCs and keep infusing every 3 weeks and see how you hold up your hb.

Best regards,
SF

Hi again, I have no time and that's why I could not inform you about my latest hb .. well on 29th may I made some blood tests and the hb level was 103. It was the 10th day after my previous transfusion. Then I receive the usual 2 sacks of blood and expect to go to blood transfusion again on 18th june. Then I will see how my hb levels is going on.. and hope it is not decreased again

Hope all will be right soon.
Thinking of you

Hi Rozitka,

It seems that you are receiving 10cc/kg of blood every 3 weeks -   the recommendation in Oakland is 14 - 16cc/kg every 4 weeks.  Since you are transfusing sooner the smaller volume should be okay but I don't know what the standard is for 3 weeks.  Your pretransfusion hg should be around 95.  Perhaps next time your doctor can transfuse you a little sooner - (2weeks) and then you can continue transfusing every 3 weeks again.  Sometimes if you fall behind you just need to catch up. 

I hope that this helps.  Supplements such as nigella, wheatgrass, carao and others should be helpful as well. 

Sharmin

What's the calculation of the maths you used?

the recommendation in Oakland is 14 - 16cc/kg every 4 weeks.

Hi Sharmin Sis & all ,
According to 16cc/kg and my weight (41kg) mine should be 656ml ... but i m on 10 days Tx schedule and having 3 Transfussions every mmonth to keep my pre-Tx Hg maintain , if a unit of blood contain's 250ml blood ( which is the least vloume ) it mean's i m getting 750ml per month ... isn't it something strange ?  i m worried once again and i think the discussion is to start once again  about the my Tx and volume of Tx .... soo much problemes , soo much complications and soo much concerns ...

Umair

No need to worry Umair,

there is one simple rule: never get below 10. This is the only rule you must follow. Starting from there,  the in-between transfusions interval should be arranged according to pre-transfusion Hb and blood received. Never mind how much blood you take, since you maintain your Hb above 10 and you get well chelated.

Lena.

Lena,
how can i avoid thinkin gabt the volume of blood i m consuming , more blod mean's more iro and i  m looking to get iron down ,  i m on 18.29 its a little high ... anywayz its okiey i think bcoze today my Hb was a lil high than it was last time  last time pre-tx hb was 9.3 and this time after 12 days it was 9.6 , pretty good and relaxing , i think that i m not having probleme like increased blood need , it could b bcoze of blood volume they might be giving me small unit than 250ml .... anywayz i m ok with this Tx rate ... thanx alot for your Words

Best Regards for you :
Umair

Before an year my hb levels was 6-7 even 5 or 7days after bt, because i was made antybodies
6months after that i was well , and my hb levels was even very higher 144 - 30 days after bt
Now my hb is normal about 98-110, 20-25days after bt.
Usually i go for transfusion with 90 -100, but sometimes its higher.

Tedi,

I am glad to know that your hg level is staying high.  How did you deal with your antibody problem?  Did you have autoantibodies?  I am very glad to know that the problems seems to be resolved.

Sharmin