Low White Blood Cell count

Hello friends!

I want to share with you my strange condition in past 2 years.
Before Nov 2008 my stats was good. 2 packs of blood every 4 weeks. My Hb level pre-trans 8-8.5, and after transf 10.5-11 ....sometimes even 12.
Well in November i changed to my chelator from Desferal to Exjade.  My ferritine level before exjade was around 2200.
In the first weeks everything seemed to be fine. I was monitored weekly. After a few months i started to feel tired......I EVEN WAS SLEEPING IN THE AFTERNOON ( i almost never sleep in the afternoon).
Then my Hb level started to drop. Before transf. my Hb level 6-6.5. I started to take 2 packs every 3 weeks. Still my post-transf Hb level doesn't pass 8.5-9 ...... AFTER 3 PACKS OF BLOOD WITH 220ml each!
Then i changed to 3 packs every 2 weeks. The same result! Before transf Hb=6 and after 9 at most!
Doctors didn't say anything! Even they were frustrated that i asked for extra blood! :| They said to remove my spleen! I didn't want to! My spleen is a little enlarged but no way of removal!


4 NOVEMBER 2010 My blood results was bad! My white blood cells count are low 3.5 .......... Sick of so many transf. i googled Exjade side effects. And i found that my problem is Exjade!
4 NOVEMBER 2010 I stopped Exjade!
18 NOVEMBER 2010  My next transfusion. Pre-trans Hb level 7.2. After transfusion Hb=9.6. White cell 5.2!!!!!! Wow i said!!!! 
18 NOVEMBER 2010 Started Desferal!
20 DECEMBER 2010 After 3 packs of blood my Hb = 11.6 
..................

And now something recent:

Yesterday i had my transfusion. I take 2 packs of blood ( ~ 220 ml each ). One pack in one day, and the other pack next day.
Pre-trans Hb = 6.4
After my last transf. my Hb level was 9.7 My Ferritine lvl: 1300
But something else concerns me......the doctor said that my white blood cell count is 3.4 again ( the range is between 4.0 and 10 )
And they said to me that i should think about removing my spleen!!!!!!!

What do you think ? What is this weird thing that is happening to me ?
Everything was so normal before 2008. I don't have any problems with my heart or any organ! Damn i even have a Medical Certificate Class 2 for private pilots!

I hope i didn't bore you with my story!

em always been  worried abt my high white Cells count :S ,, but thanx GOd now its much more near Normal Range ....

Danniel,

Before removing your spleen your doctors should consider doing Coombs test and other tests to see if you have developed immunity to certain antigens in foreign blood - possibly even auto antibodies.  After these tests are done, you may require better screening for blood or you may need to be on an acute treatment with prednisone. 

Your spleen may be part of the problem, but I think that is because your pre transfusion hg has been low from the start.  You should never let you your hg go below 90.  Ideally you should transfuse when your hg is 95 to 100.  The ideal treatment for you is hypertransfusion until your spleen returns to normal.  You should be transfused quicker, even if less volume is given each time.  Giving blood once your hg drops too low only causes the hg to be depleted quicker.  Please keep us posted Danniel, we are happy to work through this with you.  I do think your spleen is causing this, but I think that the first step is to try to shrink rather than remove your spleen. 

Sharmin

I am of the opinion that the spleen should not be removed unless one of two things happens. First, if the blood turnover is so fast that patients need transfusions much too soon over an extended period of time. Second, if the spleen grows so large that it is a physical danger to the patient. If neither of these scenarios exist, I say keep your spleen. The advice to remove it is often based on outdated ideas that no longer justify splenectomy and ignore the eventual side effects that splenectomy can lead to, such as thrombosis.

I totally agree with you Andy......As you can see, since Nov 2008 i need more packs of blood to raise my Hb.
As Sharmin said, i should transfuse when my Hb is 9.5.
Now my Hb is 9.5.....My last transfusion was Thursday,  that means i should transfuse this week again, let's say 2 pack of blood .....am i right ?
My doctors wouldn't be pleased to hear that......
And another question: How fast Hb drops ?

Danniel,

Ideally one should transfuse when their hg drops to 9.5, in your case however it would be useful to keep you hg higher until your spleen reduces in size.  For example, our doctor is handling a case in which a young boy has an enlarged spleen (because he was previously monitored by a different doctor who had allowed his hg to remain too low).  In his case, our doctor is not maintaining the hg around 11.0.  He does not receive any more blood then other patients, he is simply kept higher.  He receives a transfusion (14 - 16 cc/kg) when his hg reaches 11.0.  Over time he is not receiving any more or less blood volume per year in total. 

Using this method, this boy's spleen has reduced in size considerably, and this maintenance shall continue until his spleen is completely unpalpable on examination (normal in size).  Even then, his hg will not be allowed to drop below 95.  These days, some doctors even say that the lower limit should be close 100. This will help your bones as well.  Remember, that your spleen is attempting to expand it's surface area in response to the low blood level - in futile attempts of extramedullary hematopoiesis the spleen grows in size - and once the hg levels are kept higher the spleen will stop growing and likely shrink.  The negative effect of a large spleen in thalassemia is that cells in the plasma are rapidly destroyed because of the spleen's immune function - due to the spleens larger surface area many more cells are broken down.  This decreases the hg, causing anemia and the spleen to grow even larger and the problems becomes even worse. 

If you spleen is not putting you in danger in any other way, I would say that hypertransfusion is best for you.  If your spleen shrinks, chances are that your transfusion will last longer. 

Ideally, a patient who does not have an enlarged spleen should be transfused 14 - 16 cc/kg of blood when their hg drops to 9.5-10 (in your case, until your spleen shrinks the lower limit should be 11.0) - and the blood should last about 4 weeks.  In your case, until the spleen begins to shrink that interval may be shorter. 

Very importantly however, you need a proper examination before refusing splenectomy if your spleen is so large that it is putting your life in danger. 

I hope this helps,

Sharmin

I took a look at my last abdominal ultrasound from november 2010...and my spleen sizes are :

LONGITUDIONAL DIAMETER: 182 mm
TRANSVERSAL DIAMETER: 77 mm.......

The doctor who took my ultrasound said that my spleen is a little enlarged.....but that there is no way of removal!

Do you think now that i should try hiper-transfusing with my actual spleen size?

New updates today :
My Hb is 8.5 now and I'm going to transfuse Thursday and Friday....now I officially begin my "hiper-transf. program" if I can say that.
My Hb dropped 1.5 in a week and a day....is this ok or it's a fast drop?
According to this my doctor said I should transfuse every 10 days until my pre-tx Hb is 9.5
If this doesn't work, she said I should remove my spleen ...and this is not good news to me...

Dear Danniel,

I really think your doctor needs to give your body a chance to shrink your spleen.  At this point you hemoglobin should not be allowed to drop below 11. 

Sharmin

Thursday and Friday I had my transfusion.

440 ml in 2 packs of blood .......after transfusion my Hb= 11.0, and I'm going to have another pack next friday!

I'm just glad that doctors agree to this :D
I'll keep you updated!

That is good to hear Danniel.  I think that things will turn out for the best.  Given a chance your spleen should shrink.   

Sharmin

Hey ya ! Hope you will shrink your spleen soon and will get to normal transfusion rates. I also have my spleen not removed and I am doing my best to keep it functioning normally.

A few years ago I kept my Hb always above 10. However,, then it suddenly started dropping down and for some period of time i could get it above 8.5 before transfusions. I used to receive 2 units of blood every 3 weeks = this is what my Dr. recommended to me.  Of course, I was told that it might be my spleen causing that decrease in HB. However, my other blood tests were normal (platelets and white blood cells) which are the usual indicators when spleen doesnt work properly.

Then... 2 years ago I came to study in the UK where a hematologist ensured me I should keep my pre-transfused hb above 9.5 and said there is no  need of removing my spleen.

Currently, I have blood transfusions every 21 days and receive 3 units of blood (about 270 ml each). Before  I was not used to having so much blood at once and was really worried it is too much for me.  However, it seems the only way to keep my hb around 9.5

I still do not know if it is normal to transfuse 3 units every 3 weeks. I am reading on this forum that some people last with 2 units for 4 weeks.it is so confusing.  I do not  know how they manage to .
 
What I wanted to say from "my story" is that now I am realizing that receiving enough blood is essential for keeping your spleen in a good condition and make you feel much better ! That is why I advise you to make your doctors realize you need to be transfused more often that before (although I know how difficult it is with some doctors ). Keep my fingers crossed for you !
Keep us informed !