CAF: Iron Levels: How Low Can You Go?

From the Cooley's Anemia Foundation, http://www.thalassemia.org/video-on-iron-levels-how-low-can-you-go-from-conference/

This is a 3 part video and is well worth viewing.
...in 3 parts, is the presentation on "Iron Levels: How Low Can You Go?," presented by Vasili Berdoukas, OAM, MB BS. FRAPC, Children's Hospital Los Angeles.  


Apparently, we should not be worrying about going too low with ferritin levels. It is suggested that iron deficiency levels may be beneficial for thal majors. Daily chelation is the only way to make this possible in transfusing patients.

Very nice read and video presentation in the latest CAF update. It concerns many patient's query as to how low iron levels should be as many people often may panic in doing so.

http://www.cooleysanemia.org/index.php?option=com_content&view=article&id=586:video-on-treatment-for-non-transfused-patients-from-conference&catid=35:articles&Itemid=55

-P.

Dear Andy,

My daughter Avni's iron level in July-12 was 1014 and after 5 months of chelation the iron level dropped to 834 in December-12. Now when the iron levels have dropped below 1000, our pediatric has reduced the dosage to 250 mg  a day. Avni is about 17 month old now and weighs 12.3 kg. Do you think I should be more aggressive on iron chelation and increase her dosage to 500 mg per day as per her weight.

Regards,
Himanshu

Just wanted to add that she has been transfused twice since her last ferritin test. How much iron gets added in the body with each transfusion?

Himanshu,

which chelator are you using for your daughter? As far as I know, generally in US, chelation does not start before a child turns 2 years old, irrespective of the ferritin level.

Dropping the dose now is good, because the child is so young. This is only a maintenance dose, so once the child is past age 2, the dose should be adjusted.

Himanshu,

which chelator are you using for your daughter? As far as I know, generally in US, chelation does not start before a child turns 2 years old, irrespective of the ferritin level.

We started with Defrijit but we have shifted to Desirox now as availability of Defrijit was an issue.

Usually the chelation starts only after 10-12 transfusion and by that time the baby would also be close to 2 year old assuming that first transfusion would happen at the age of 6 months and there after every 1 and half months. When we started transfusion our pediatric also told us that we may have to start chelation after 10-12 transfusions. But Avni's iron level crossed 1k mark just after 4 transfusions and hence we had to start chelation. She was transfused for the first time when she was just 3 months old.

We started with Defrijit but we have shifted to Desirox now as availability of Defrijit was an issue.

Usually the chelation starts only after 10-12 transfusion and by that time the baby would also be close to 2 year old assuming that first transfusion would happen at the age of 6 months and there after every 1 and half months. When we started transfusion our pediatric also told us that we may have to start chelation after 10-12 transfusions. But Avni's iron level crossed 1k mark just after 4 transfusions and hence we had to start chelation. She was transfused for the first time when she was just 3 months old.

I'd suggest to give her low doses of IP6 (500mg/day) mixed with food or so while you're not starting chelation. That will naturally help her iron levels go down. Also include tea in her diet so that most of the unwanted food iron is absorbed with it.

-P.

I did think of starting IP6 but after reading your posts i decided against it. 

I did think of starting IP6 but after reading your posts i decided against it. 

Ha ha,

Himanshu indeed I'm having problems with it but it's not the case for all!

Sharmin's son, who's taking IP6 from past 5-6 years, since he was as old as 9 years, was accustomed to it and never had any problem. Many members from here take it.

All doesn't react to it. You can try ordering a bottle from Puritan and see.

Although, the decision is yours. But as you've read Sharmin's post, see the effects IP6 has given to her child, he's classed as completely normal with normal pituitary gland, normal growth and everything just fine. Hearing that compliment is a big reward for thals.

-P.

Himanshu,
Isn't desirox same as EXjade? then it is not approved for use below 2 yrs of age I believe. We started chelation for our daughter when she turned 2 yrs and her ferritin was 1800 (she also started Tx at 2 months of age). Dr. Neufeld was very clear in his direction to not start chelatation before the age of 2 as the chelators can affect the development.
So, do make sure her growth velocity is good and she is taking mutivitamins with trace minerals. At this point, you should either discontinue the chelation till she is 2 yrs old or reduce the dosage to maintenance dose and restart at the chelation dose when she turns two. That will be my thought based on our experience.

Himanshu,
Isn't desirox same as EXjade?

Yes, one and the same. Same content, Defrasirox. The only difference is that it Desirox is manufactured by Cipla.

-P.

How low, you said?
Well whichever level is not low enough. Mine is fixed to 37 now. Is this low enough? As low as it may be, I have not stopped chelation.
But we have talked about that already...that we should not stop chelation, I mean.

Hi ,

Today I have logged in after a long time. I have been blessed with a baby girl who is 2.5 months now. shle was diagnosed as Thal minor during my pregnancy but she looks very pale at times so that worries me a lot.

I wanted your advice on my son's chelation. His current iron level is 220 and he is taking 400mg per day. He is 3.8 yrs and 14 kg. As his iron level as reduced from 2300 to 220 in 1.5 yrs can I reduce the medicines now.

Secondly he was recently admitted to hospital due to infection where he had stomach pain and vomiting. It started right after transfusion. We use WBC filter also. What can be the cause...I am worried with the blood transfused can cause infection or it was just a coincidence to have it that time. During the admission we even did ultrasound for his stomach as he always complains of stomach pain. It showed enlarged liver. Is the stomach pain due to that and why the liver is enlarged when his HB is always above 9 and iron level maintained.

Too many questions.....but please try to  reply to all.

 Thank you.

Ha ha,

Himanshu indeed I'm having problems with it but it's not the case for all!

Sharmin's son, who's taking IP6 from past 5-6 years, since he was as old as 9 years, was accustomed to it and never had any problem. Many members from here take it.

All doesn't react to it. You can try ordering a bottle from Puritan and see.

Although, the decision is yours. But as you've read Sharmin's post, see the effects IP6 has given to her child, he's classed as completely normal with normal pituitary gland, normal growth and everything just fine. Hearing that compliment is a big reward for thals.

-P.

I will try ip6 once she is 3 or 4 yrs old and grown up enough to express problems if she encounters any. Right now if ip6 doesnt suit her she wil not be able to express it and i wdnt know what exactly she is experiencing.