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Transfusions and Iron Overload Blood and platelet transfusions, iron testing and treatments

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  #1  
Old Sun Oct 26, 2008, 03:58 PM
LynnI LynnI is offline
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Do ferretin levels drop on their own?

I have been tx independant for 15 wks and going strong. My ferretin levels had been at 530 which I know isn't a concern yet.
I was wondering if the ferretin levels return to normal given enough time when a patient is tx independant.
Does anyone know?
I have to admitt I haven't been getting copies of my CBC's lately but intend on asking for them this week. I also know that my ferretin levels are checked with every CBC.

Thanks and take care
Lynn
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  #2  
Old Sun Oct 26, 2008, 06:01 PM
Neil Cuadra Neil Cuadra is offline
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According to the Iron Overload Diseases Association, an average human body loses only about 1 milligram of iron a day, through hair, fingernails, skin cells, and other organic waste. It's about 1.5 milligrams for women of reproductive age. We get iron in our diets and it is not excreted. Therefore, it's hard to produce a net loss of iron without phlebotomy or chelation.

No individual is "average" so it's worth knowing your serum ferritin level. Even if it does not drop while you are transfusion independent, I'm sure you're glad not to have it rise.

For more information, see A New Perspective on Iron Deficiency, and of course talk to your own doctor.
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  #3  
Old Mon Oct 27, 2008, 08:39 AM
LynnI LynnI is offline
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Thanks Neil;

Yes, it is good to know that the levels are not rising now and hopefully I get some mileage out of this treatment and it continues

Take care
Lynn
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  #4  
Old Wed May 25, 2011, 01:23 PM
Lori. K Lori. K is offline
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Before I started taking exjade and desferal to lower my iron I drank LOTS of ice tea, for some reason tea lowers your iron. I remember going to the Dr and they checked my ferratin level and the Dr was like wow your iron level went down and he asked if I've been drinking tea.
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  #5  
Old Wed May 25, 2011, 08:51 PM
cheri cheri is offline
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What kind of tea?

Hi Lori
Do you drink black, green or another type of tea?
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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  #6  
Old Thu May 26, 2011, 09:39 PM
Lori. K Lori. K is offline
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Talking

No it doesn't matter what kind of tea it is. Tea blocks the iron absorbtion in the body.
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25 yrs old, Diagnosed with Pure Red Cell Aplasia in January 1999 At age 13, Monthly blood transfusions of Red blood cells Every 4 weeks, Takes Exjade 1750 MG. Started Horse ATG 6/20/11; Taking Cyclosporine 200MG twice a Day!
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  #7  
Old Fri May 27, 2011, 07:59 PM
Lisa Z Lisa Z is offline
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Lynn- I don't think that Ferritin levels will drop by themselves, if you've had red blood cell transfussions. But if you are in the 500 range, you don't need to start chelation. I started when I was over 1000, and even then my docs said I could wait. I didn't want to, I wanted to get back to normal counts.
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Dx. 6/08 with AA, then changed shortly thereafter to MDS. Campath trial at NIH March '09 and have been transfussion independent since June '09
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  #8  
Old Wed Jun 1, 2011, 01:21 AM
mscrzy1 mscrzy1 is offline
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I think they do drop on their own, although very, very slowly. I had a total of around 69 blood transfusions when I was really sick with AA. I can't quote my ferritin levels at the time without going through my ton of records, but I do know that I was getting close to needing chelation therapy when I finally became transfusion independant. I never ended up doing it. My last transfusion was in August of 1997. I've been transfusion independant all these years and in November 2010, they checked my ferritin levels. I was at 370. It's still higher than normal, but nothing to worry about. I do drink a lot of tea and my hematologist actually said that hot tea works better than cold tea for some reason. Don't ask me why. I have no idea.
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36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil
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  #9  
Old Wed Jun 1, 2011, 07:49 AM
Marlene Marlene is offline
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Women still menstruating will use up iron. That's why so many are anemic especially if they have heavy periods. Other than that, your body hangs on to iron since it is vital for blood production. So blood loss and chelation are really the only two methods to reduce iron efficiently and quickly. There are some natural chelators that can help but they are not very efficient like desferal or exjade.

Your body regulates the uptake of iron from food base on need unless you have hemchromatosis. Vitamin C will increase absorption and anything with tannins, like tea, will reduce uptake.

So it make sense if you are menstruating and drinking tea with meals, your serum FE will come down.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 90K.
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  #10  
Old Wed Jun 1, 2011, 04:36 PM
Hawaii Bill Hawaii Bill is offline
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Ferritin

Just wanted to say that my experience shows that the counts will drop on their own over time. At the time of my NIH visit, my ferritin count was 2200. I got my last RBC transfusion the following month.

I avoided iron-rich foods (cereals are really bad), and my ferritin is now down to 500-900 every month. It has been lower, but I eat more meat these days and do not restrict iron.
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Male, 56, dx Nov2006 VSAA (BMA:0%). Responded to ATG/CsA/Prednisone/Neupogen Dec 2006, but relapsed in June 2007. Counts are responding to using CsA 200mg bid alone since Jun 2008. Last PRBC tx: Jul 2008.
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  #11  
Old Thu Jun 2, 2011, 03:15 PM
triumphe64 triumphe64 is offline
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At last years patient family conference in Bethesda one of the doctors had a subgroup meeting on this. She said it would drop over a long time, but did not give any dietary tips, as I recall. At the time, my doctors had not shown any concern, but now they have mentioned it.
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  #12  
Old Mon Jun 6, 2011, 11:30 AM
celebrations celebrations is offline
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Hi,
Maybe you can give me some advice or answer - all the health care professionals don't seem to

In October 2010 I head to break up with the Exjade therapy (1000mg/d) because my creatinine steadiliy went went up....
I had wanted to pause for a couple of weeks and then restart.
My ferritin was at 800 then.
In January 2011 my ferritin was slightly above 400 !!! Dropped down on its own.
How come ???
In the same time I had my tx every 18 days without chelating.
In May 2011 my ferritin level again was about 800 (without Ex.)
After 26 transfusions I have about the same level as in October without taking Exjade ?

Where is all the iron? :big grin:

Greetings, Bergit
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  #13  
Old Sun Jun 12, 2011, 05:52 AM
celebrations celebrations is offline
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Hi,
having been in hospital for another transfusion, my ferritin level was 970, so I will restart Exjade next week.
Again I tried to get some explanation for my "ferritin career", nobody of the medical staff had an idea

greetings, Bergit
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  #14  
Old Fri Jun 17, 2011, 01:02 PM
akita akita is offline
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Hi Bergit,

nice to meet you here. I am only logged in because i received an answer in a threat watched by me...

My explanation of the instability of the ferritin level in your case would be, that

- there is no reliable answer to give. It could be that the ferritin level tends to sink down with the iron then binding on tissue and organs. Or the ferritinlevel ist not reliable for a serious mesurement of your actual ironload. Your level was higher than 1000, and i remember a libanesian study where they found out that the ferritinlevel is not reliable between 1000 and 2000 (i am not sure for the exact counts), - but it seems not impossible for me that the levels you had in the last months were not reflecting you exact iron load by the same reasons as they did not reflect them in the Libanesian study. Also it could be that the form by which your body stores the iron uptaken with the transfusions changes by some circumstances which are unknown by you. In many cases mds patients have elevated ferritin levels even when they have still not got any transfusions..

Salut! All the best for you!
Kind regards
Margarete
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