Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: PositiveVibes on May 22, 2009, 10:56:24 PM
-
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 .... :whew 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 :thankyou2
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 :wah
6months after that i was well , and my hb levels was even very higher 144 - 30 days after bt :dunno
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
-
Sharmin, the right name is taht u use autoantibodies, with every bt my doctor have made me an orbazone.
This condition az i said was 6 months period.But now everything is fine. :wink
-
Before an year my hb levels was 6-7 even 5 or 7days after bt, because i was made antybodies :wah
6months after that i was well , and my hb levels was even very higher 144 - 30 days after bt :dunno
Now my hb is normal about 98-110, 20-25days after bt.
Usually i go for transfusion with 90 -100, but sometimes its higher.
wow... if I understood properly , you are thal major and you have had hb around 144 after 30 dayss.. ?? If it is so, you are lucky ..:)
-
wow... if I understood properly , you are thal major and you have had hb around 144 after 30 dayss.. ?? If it is so, you are lucky ..:)
yes :wink
-
WOW Tedi ,
you're really soo lucky ....
-
WOW Tedi ,
you're really soo lucky ....
Thanks, its normal now about 98-110 before bt.
-
This is very interesting Tedi, but did the doctor gave you an explaination for this?? Were you doing any thing thing different that led to maintaining such a high HB??
manal
-
This is very interesting Tedi, but did the doctor gave you an explaination for this?? Were you doing any thing thing different that led to maintaining such a high HB??
manal
Hi Manal, i do nothing special, i dont take any pills - only vit.C and dfo.
My doctor couldn't explain the higher hb levels.
May be it was only a period.
-
Thanks Tedi for your reply, hope this trend will be back soon :wink.
Take care
manal
-
DO YOU THINK
PROFFESER ALI TAHER
IS VERY GOOD ?
is he really worth leaving australia for me to go for him can anyone tell more about him i need to know
am i makeing the right desseion
-
Yes Mariam, he is so much expierenced in thal, but generally he is a hematologist for adults. There are other well known names for children in Lebonan too that he can refer you to or he may follow Aysam as well too.
In Lebonan,there is high rate of thal that is why they have good expierence there
manal
-
Good luck in what ever you decide, Mariam.
:hugfriend
Keep us up to date, please. I wish Aysam and the rest of the family good health.
-
Hi Mariam, I am from Sydney too and my little girl (who is nearly one) has Thal Intermedia. Which doctor are you seeing in Sydney?? Are you going to Westmead?
-
Hello I was for my transfusion today my HGB before it was 116 :wink
Hope everyone is fine!
-
Good to hear from you Tedi :hugfriend
Zaini.
-
Nice hb level :) I hope it went well.
-
Thanks :hugfriend
-
got hit forums after several months... past 7 months i weighed 41kg ..... and on my average 42 43 kg .... my body consumed 1g of hb per week and with 250 ml of blood it raised 2 g ... figures were quite good with the one having spleen intact .......now after 7 months ... i have weight gained of 9kgs cuz of bodyvuilding and keep my hb level on average 14....yeah i raise it to 17 and then transfuse again at 13 ........ and now at 50kg i've seen that im consuming more blood than b4 ,,,, and 250ml of bag is raising 1.5 g hb now instead of previous 2g .....
Hb gets lower possibly cuz of ... spleen ...or quality of blood transfused ..... due to illness , fever or injury also ....including weight gain
-
Hello, Its a question for my HGB levels.
As i told before i have very high levels. Yesterday i was on 25days with HGB 12.5 My question is do some of u have such levels, even last year i have about 50 days without BT.
-
i had maximum of 17.5 HGB ..... from past 7 months my average is 13HGB AM :crazy i think
-
Suddenly, after being for 9 weeks on a hgb of 4.8 (x1.5 for you) it went up to 5.7!!!!!!!!!!!!!!!!!!!!!!!!!! (this already happend twice)
What did I do different this time? I was acting not so bravely with taking Exjade. You may not believe me, but everytime I quit with a chelation med, my hgb goes (or stays) up for a longer time. During the previous time my hgb stays in the 7 (x 1.5) even when it was 4 weeks after my last transfusion!
Why can't I just have this not always!?!? :-\
-
Dore, did you get any explainations from doctors???
manal
-
Nom they never give their opinion about it. Just that it is good, not more. Did someone else experience this?
-
Hello,
Hemoglobine is a discussion I never dare to have with my doctor. I go to hospital every 3 weeks and I have 2 bags from 270 to 300cc. I am 27 and I weight 71kg.
My doctos sais I have to be below 9 because my ferritine is very high.
The theory I have is that if I'm getting 2 bags every 3 weeks either way, it doesn't matter if I have them when my Hb is 9 or when it is 9.5 or 10.
I know from you and from TIF that Hb should be always over 9 but it seems impossible for my doctor to "accept" that.
Should I ask my doctor to "upgrade" my hb level?
Thanks a lot,
Laura.
-
Hi Laura,
your Hb must always be over 10, from 10 to 11, no matter what your ferritin level is. In fact, it is totally irrelevant. The modern theory is: Hb over 10 and ferritin as low as possible, definitely below 500.
Let's say that after three weeks you present yourself with Hb 8...will your doctor still transfuse you with 2 blood bags? :huh
Your doctor should concern to help you lower your ferritin, not your Hb.
Lena.
-
Hi!
Thanks for your response Lena.
Well, in the case that I'm below 8Hb then I get 3 bags but I have to ask for it.
If you have the information, I'd like you all to tell me if this "modern theory" that you mention has been developed or passed on in any congress.
Thank you all,
Laura.
-
Hi Laura,
Most thal specialists will now agree with what Lena has said. Current treatment standards recognize that low Hb leads to low oxygen levels, which cause many problems long term. It is now recommended that transfusions be given when the Hb is no lower than the 9-9.5 range (this will vary slightly from thal center to thal center, but the lowest Hb before transfusion used by most centers is 9). With modern chelation, it is a better practice to maintain a high Hb and give thal patients a better quality of life, but chelation compliance is absolutely required. What is your current chelation routine?
-
Hello,
Hemoglobine is a discussion I never dare to have with my doctor. I go to hospital every 3 weeks and I have 2 bags from 270 to 300cc. I am 27 and I weight 71kg.
My doctos sais I have to be below 9 because my ferritine is very high.
The theory I have is that if I'm getting 2 bags every 3 weeks either way, it doesn't matter if I have them when my Hb is 9 or when it is 9.5 or 10.
I know from you and from TIF that Hb should be always over 9 but it seems impossible for my doctor to "accept" that.
Should I ask my doctor to "upgrade" my hb level?
Thanks a lot,
Laura.
One more thing,the lower your hb is,the more iron your body absorbs through the gut,so how is this helping your iron overload anyway,your doctor should revise your transfusion schedule.
Zaini.
-
Mine was two days before transfusion time 4.8ml/l. That is, keep breathing,in gl/dl 7.7
:$
-
Hello!
I'm encouraging myself to talk to my doctor about my Hb levels and I really appreciate your help.
About my chelation routine... It is changing now. Until one month ago, I took 3 exjade of 500 and 3 of 125 a day, 3 weeks ago, we changed it to 4 exjade of 500 and 2 of 125. And now, since Monday, I take 5 of 500 because my ferritine had gone up from 2400 to 3200 in two weeks.
About the Hb level, I would be very happy if I could reach to be between 9 and 9,5 since it is at that point when I sart feeling very bad. The problem is that I keep my Hb quite high during the period between transfusions but I usually have a drastic drop of Hb. For example, last week I had an analysis on Thursday and I had 10.4 and on Monday I had 8,6. This makes the fact of having my first transfusion at 9 or 9,5 a little difficult but I'm sure that if I wait for the day that my Hb is in that range I'll be able change my transfusion routine.
I'll tell you about it when I have talked to my doctor.
Thanks again for everything,
Laura.
-
Hi Laura,
Your current dose should do the job. You were taking a bit less than needed when you were taking 3 exjade of 500 and 3 of 125 a day [1875 mg daily]. Your dose should be at least 2150 mg daily, and taking the higher dose of 2500 will help to lower your ferritin more quickly. This is also good if you choose to transfuse more frequently. I am concerned about your quick drop in Hb. Do you know if this is an antibody reaction from the transfusions? This should be checked out and if needed, a course of prednisone should be started.
-
i dont know how u guys manage to have such high HBs, mine usually when i get transfused is 8-9, then i will have 3 bags. If hb is 10 or over they give me 2 bags. I understand the max normal hb is 14 bu i dont think ive ever reache that, after transfusion i am usually 12-13. after the 4 weeks usually its 8-9. Today it was 9.7 and they were going to give me 2 as htey thought it was a good hb but int he end just gave eme 3. I have decent chelation am v compliant consultant is v happy with me and i have my spleen. Im not sure??
i have exjade od 1250g as this is what the consultant said is the approved amount max for my weight of 7st, the said if mt hb goes too much high on exjade he will return me to desferal, so i dont understand as andy u say the dose should be a lot higher.
-
wow Eesha 3 bags, its too much.
Last months i had 10.0-12.0hb and 2 bags.
-
I had my last tx at thursday with an interval of 2 weeks and 2 days. One bag was given and my next one is at next week thursday. I'd a hgb of only 7.7gl/dl.
-
Hi Laura,
Good luck with your doc meeting. I got mine at the end of June and I got the same questions. Actually I am going to ask to move from 2 weeks 1 bag to 4 weeks 2 bags. I really need to see less hospital in order to feel better. Now I am only 1 week off and the other week I spend one morning and a whole day in H. If everyone knows more questions, send me an private message. I read them but I do not have time to answer them. Btw, I do understand I need a super transfusion to leave this low hgb. I feel pretty bad.
-
Thanks to everybody.
I think I'll print all your post about this topic and I'll show them to my doctor.
I just hope that my doctor is not going to say me something like "What is good for the rest of people might not be good for you".
Tomorrow I'll ask for a date with her and I'll write to you all again once I have talked to her.
Meanwhile, like Dore, I'm going to ask you for more things you think I'd ought to talk about with my doctor. By the moment, I have to talk about my pretransfusional Hb and about my Hb drop (the antibody reaction Andy was talking about).
Thanks again,
Laura.
-
Tedi im confused, why do u say that 3 bag is too much? i get transfused every 4 weeks. Waleed says his hb always stays 17 so im conufused, why do u think i have too much. and in the other posts about speed of transfusion a lot of people were talking about having 3 bags in 1 go. im confused??????????????
-
Eesha, you should be taking 15ml of blood for every kilo (your weight)
manal
-
hI,Eesha i never ger more than 2 bags, because of that i told it.
I have transfusion every 30days with 2 bags, sometimes 1bag-depends.
Yesterday i hav trans. with 2 bags- hb level before trans. was 91.0
:hi5girls
-
Hey ya ! Does anyone can tell me how much blood I need to get in order to keep my hb btw 9-9.5. I am 61 kg and usually have 2 units of 280-300 ml . Unfortunately my hb level is btw 8-9 . I don't know wat t do in order to keep it higher. I am taking IP6 , Folic Acid and other vitamins but stil there is no help.
I am wondering if i receive the necessary amount of blood and do i need to reduce the time interval btw bt.
I have also read that it is recommended to take L-carnitine as it helps to prolong the life of eretrocytes. What is the dose and how to take it ?
Thank you
Rozalina
-
Hi Rozalina
Concerning transfusion, you should be taking 15ml of blood per kilo, so this means you are taking a small quantity
As for L-carnitine, it can be taken from 50 to 100mg per kilo. But all the studies done using L-carnitine in the field of thal used 50mg per kilo. So according to your weight, you should take 3050mg per day divided into three doses
Manal
-
Hi Manal ! I used to study and live in the UK this year and while I was there it was possible for me to get 3 units of blood.
However during summer I will be staying in my country where you cannot receive more than 2 units. The only solution to increase my hb is to reduce the time interval btw transfusions.
As far as L-carnitine is concerned I am starting it these days. What do u think about it ? Any help ? Should it be in the form of pills/tablets or syrup. Before or after the meal?
Thank you a lot!
Best Regards!
-
Hi Rozitka
Yes L- carnitine does help. Not only as an antioxidant and muscle strengther, but it also can increase the time between transfusion in some patients. It can be in any form. I have friends that take the L-carnitine of GNC and they are satisfied with it.
You can take it before or after the meals, as you like, but in my opinion i believe that any thing is better taken after meals unless the opposite is specified.
Here are some links discussing the importance of L-carnitine to thals
Improvement of Cardiac Function in Thalassemia major Treated with L-Carnitine
http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowAbstract&ArtikelNr=76522&Ausgabe=229926&ProduktNr=223829
Assessment of Puberty in Relation to L-carnitine and Hormonal Replacement Therapy in {beta}-thalassemic Patients. http://lib.bioinfo.pl/auth:El%20Beshlawy,A
Apoptosis in Thalassemia major Reduced by a Butyrate Derivative
http://content.karger.com/ProdukteDB/produkte.asp?Doi=87890
Diastolic Dysfunction and Pulmonary Hypertension in Sickle Cell Anemia: Is There a Role for L-Carnitine Treatment?http://content.karger.com/ProdukteDB/produkte.asp?Doi=89472
Pulmonary hypertension in beta-thalassemia major and the role of L-carnitine therapy.
http://www.ncbi.nlm.nih.gov/pubmed/19065439?dopt=Abstract
Hope this helps :wink
manal
-
Last week my pre transfusion was only 7,4 gl/dl. I am not even try to describe the dilemma I am in. Fact is that I will try to solve this issue completely before I leave on vacation to very rural France. The other fact is that I need a better transfusion scheme. I won't have my next transfusion until the second of July.