It was too good to be true!

Hi all, well christian transfused yesterday and if you read my previous post you know this is about his ferritin levels which i had posted.  i was concerned how in a 2 month period it had gone from 1800 to 1100 and i was a bit of a cynic.  yesterdays ferritin levels were 1543.  i dont know where his levels rae at the minute.  nothing has changed in compliancy nor has he been sick. 

we have been consistent, maybe its the people in the lab being inconsistent.  i will have to wait till next month to see the numbers so i can get some kind of an idea as to what his ferritin levels actually are!

vic

Hi Vic,

Don't get dis-hearted. The difference between two Ferritin results that are measured close together can give fluctuating results. You have to stay compliant and see the trend that is being showed over a larger gap without getting concerned about any test that shows sudden increase in between. This is the reason our Thal. Center measures Serum Ferritin after 6 months.

Ferritin tests are affected by many things and small fluctuations should be no cause for concern. Christian's level remains in an acceptable range and the variation between tests hasn't been anything unusual. The follwoing article states some of the factors that can influence ferritin tests.

From http://www.charite.de/ch/medgen/eumedis/thalassemia04/monitoring-iron-chelation.html

Serum ferritin: it is the most widely used parameter to quantify the iron overload; unfortunately many factors independent from iron stores, as infection, inflammation, hepatitis, hemolysis, vitamin C deficiency may alter significantly the serum ferritin concentration.

Ferritin testing is used to monitor iron levels but are not considered to be completely accurate. Tests such as liver biopsy, MRI, SQUID and Ferriscan analysis of MRI's are used to give a much more accurate measure of actual iron stores, rather than testing blood serum. While ferritin testing is used to measure progress or lack of progress, it is not intended to be the ultimate measure of iron stores. Changes in the 100's between tests are common and should be no cause for alarm. At some point, Christian will have one of these other tests and you will have a much better idea about his situation. These tests will be done regularly (possibly annually) and will give a much better picture of his long term iron stores. Keep in mind that iron in blood serum poses no danger. It is the stored iron that causes damage to the organs and tissue.

My feeling on these results is that Christian continues to show that his iron levels are not increasing and at his age, this shows that the chelation is doing a good job regulating iron in his body. Many parents of young children have problems maintaining ferritin below 2000, largely because of different chelation issues, such as minor reactions to desferal, or simply wanting to give a child a break from the needle, or even trouble establishing the proper dosage. In my opinion, considering Christian's age, he is doing quite well in maintaining a low, acceptable ferritin level.

thanks andy,

as usual you are encouraging and positive and that is how i wish to remain.  you're right in that the levels are not high and it is working.  so i will just wait until april when we do the more accurate tests.  thanks again.
vic