Ferritin jump

Hi everybody,
My son has been on wheatgrass and IP6 for about 6 months now. Recently he has been changed to being transfused every three weeks instead of 4 which was disappointing as I had read that wheatgrass starts to show effects after 6 months and was hoping for an increased interval. Last visit his Ferritin had gone down from 672 to 627 and I was soooooooo happy thinking maybe something is working but yesterday after three weeks it had suddenly jumped to 940. He hasnt been very sick either . Only a very minor cold for a day or two. I am really hoping the lab result was wrong somehow. Would retesting serve any purpose?
I give him the IP6 an hour after a meal and someimes give him orange juice before another half hour is over but usually nothing. I havent had success giving it to him crushed in water. He gags on that . He does enjoy using his new molars to chew the tablet though so I just let him eat it that way and then try to get him to drink water afterwards. Am I doing something wrong?
I am glad to read about exjade working for others as it is the chelator the doctors are planning to put my son on but I think we have to wait till he is 2 years old for that and there are still 4months to go.
Does ferritin go down and up erratically like this ? Uptil now it had been a pretty regular increase each time it was tested.
Zahra
PS Your site helped me alot yesterday when my son was accidentally almost overtransfused 370ml when the maximum should have been 235 ml at 20ml/kg . I wouldnt have known or had it stopped without you guys. Thanks.

Hi Zahra,

I do not think you have anything to worry about at this point in time. Your son is not on any iron chelator drug so the rise in ferritin is natural. The IP6 is a natural chelator but you should not expect it to lower the ferritin single handedly, it just aids in chelation.

Exjade is a good iron chelator drug and have proved good so far. The fluctuation in ferritin as you have noted is natural and is dependent so many factors, such as state of health, daily water intake, etc at the time the sample was taken.

Lots of love to little prince.

Hi Zahra,

Even a small cold will cause ferritin to rise and this has absolutely nothing to do with iron load. The body sequesters iron in the serum ferritin when it becomes necessary to deprive viruses and bacteria of the iron that makes them thrive. In this situation, the ferritin reading has nothing to do with any added iron load. Of course, as long as he is getting blood and not yet chelating, his ferritin is bound to rise, even if the IP6 is slowing the iron absorption. I don't see this as a problem since he will be starting Exjade in 4 months. Even though it's best to take IP6 on an empty stomach, the main consideration is to not take it with protein foods, so you can experiment with how to best administer it, as long as it isn't mixed with milk. Any type of juice or water is fine and even a snack is OK as long as it's not protein as this will diminish the effects of IP6.

Wheatgrass will not raise Hb in everyone as it does seem connected to the person's ability to produce fetal  hemoglobin and this is definitely not equal in all and is related to genetics. However, I do believe wheatgrass is useful in strengthening the immune system and also raising energy levels, so I do recommend it even if there is no change in Hb.

Andy and Canadian family,
Thank you  for your explanations. I think now that it is best to wait till his next appointment and see if his ferritin has decreased then. Otherwise we will just have to wait till exjade is started.
Zahra

Hi,
Just wanted to update that I spoke to the doctor today. He said basically the same thing that a viral infection , even so mild it isnt noticed, can cause this kind of rise. He said that is why they dont  take a single ferritin result when deciding about chelation . He is hoping it will be less at the next test on the 17th and said it really isnt anything to worry about even if it gets to 1500 before chelation starts 4 months from now. Thanks again for all your help.
Zahra

Hi everybody,
Good news. My son had his transfusion yesterday after 4 weeks and his pretransfusion Hb was 10. I had been worried about going for 4 weeks  when his pretransfusion Hb was 9.5 after 3 weeks last time. Also his ferritin has gone down to 765 from 940 last time. I guess he did have an infection that caused it to go up last time. Allah ka shukr hai.
Zahra

Zahra,

Glad to hear that .

Zaini.