Hb levels

Thanks

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 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? 
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.