Discussion Forums > Thalassemia Major
Ferritin too low?
Apollo:
Hello everyone, I was hoping for some advice on my latest situation. My ferritin is currently at the lowest it has ever been, 390, and I have been advised to stop all ExJade until I go back over 500. The reasoning behind this is that the Exjade will do nothing for me, in terms of extracting iron from the liver, if my ferritin is so low. However, I asked if a maintenance dose of 1 pill a day would be good. So what do you all think? I worry that without taking Exjade the some iron may accumulate in the liver. My doctor assures that this won't be the case.
Thanks!
Apollo:
Thoughts?
Zaini:
Hi,
It basically depends upon your doctor's opinion,one of our members Lena keeps her ferritin around 100 but she never stops chelating,on the other hand she is not using Exjade as far as i remember,she is on desferal and L1,so may be your doctor is saying so because of exjade.one thing you can do is keep a check on your ferritin level and as soon as it goes above 500,start taking exjade.
Lena:
Hi Apollo,
I have just read your post.
Zaini is right. I keep my ferritin around 100 and though I am on Ferriprox and Desferal combination therapy, there are other thals in my Unit who are on Ferriprox/Exjade combination therapy or just Exjade. Our doctors do not advise us to stop chelate, not even when our ferritin drops under 100. I know a guy whose ferritin is around 30 and he keeps on chelating with Ferriprox and desferal. The idea is that one should not stop altogether because this can cause a deterioration and an iron accumulation. So in this case, the only thing you can do is slow down in your chelation therapy although I can tell we are not advised to do that either.
Lena
love and prayers:
Lena I read the normal range of ferriten level is 10 to 291 . Optimal levels are 70 for adult females. You're at 300 :cheer
Could I please ask about how you're managing the Ineffective ErythropoIesis and hemolysis?
Is everything great as well?
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