When to start chelation?

Hi there,

My husband just found out he has high iron levels, caused by his (apparently undiagnosed) Beta Thal. We knew Thal ran in the family, but no doctor ever told him his blood work indicated an issue. Well, now it does...

My question is, how do you and your doctors decide it's time for chelation? My husband has never had transfusions, and at this point can't identify any high iron/Thal symptoms until recently.

Our doctor told him to follow a low-red meat (I'm still trying to figure out the details of that one) diet. We are working with her to discuss the details, further testing, etc.

Is a low iron diet ever enough, or is he undoubtedly going to need chelation?

Do you know what his ferritin level is? That will determine if and when he needs chelation drugs.

When the body's hemoglobin level is low, it will absorb more iron than normal from the gut during digestion. Unfortunately, this has no positive value when it is thal causing the low Hb. The bone marrow can't make enough good hemoglobin to rise above anemia, regardless of how much iron is present. This happens especially in non-transfusing intermedias because they have a low Hb. Iron absorption can be far higher than normal, resulting in eventual iron overload. A low iron diet is very important. Vitamin C and foods high in vitamin C should not be taken with meals as they will add to the amount of iron being absorbed. Drinking tea with meals can inhibit iron absorption and is encouraged. There are also natural supplements, IP6 and green tea extract that are mild iron chelators and are useful as an alternative if the iron load isn't high.

It is not uncommon for thal intermedias to have to chelate. If iron absorption from diet is high, a low iron diet will help, but may not eliminate the need for chelation. Seeing his blood and iron reports will help me give you a better idea of what you can expect. If you are not also a carrier and you feel that your son is also intermedia, DNA testing will be in order, as intermedia patients have two beta thal genes and this requires both parents being carriers, unless it is the rare dominant beta or an alpha thal mutation (not deletion) is also present.

Thanks for your response.

We are still waiting to get his labs. Our doctor called him when she got them.... the others he got at his visit. I'll post when I get them.

She gave him lots of B supplements and liver support supplements. His liver is showing some struggle, oxidative markers are high on labs. She wants him to reduce his red meat and retest in three months. I'm concerned this won't be enough.

We have already started giving him tea or coffee with meals, added a bit of cheese or milk to kick it up.

He has dropped his penchant for Arnold Palmer's with meals and we are watching his alcohol and vit c intake at meals. Also, he's trying not to drink alcohol with meals, since it is said to increase absorption, also.

I am learning to cook again, the third time in my life. It is a bit....interesting...to cook for an iron deficient Celiac and an iron overloaded Thal at the same time. I doubled my iron supplement - only solution I could come up with.

We probably will proceed with genetic testing for both him and my son. My MIL had Thal, but she ran anemic and never needed transfusions. Her brother apparently had hideous doctors who never picked up on the Thal (even after being told) - he died from a combo of liver failure and diabetes. At some point they were giving him iron.

Hi,
My Eight month old son just finished his 3rd blood transfusion and his ferritin level is already at 800; is there a reason to be worried and is there anything I can do to bring this down. Based on what i have read, we should chelation only after approximately 10 transfusions.
Please advice.

Thanks in advance

Vikram,
1st of all single ferritin reading of 800 may not be strictly due to iron overload. consecutive readings in the similar range will suggest that it is indeed high ferritin. Your son's ferritin will increase with each transfusion but chelation should not start before the child is 2 yrs of age and 10 or more transfusions has happened. So do not worry for now. Focus on healthy diet for him. However, if you can give IP6 to your child that may be a good idea. it is a natural iron chelator and will not cause any harm. We used to mix the content of the IP6 in milk and give it to our daughter. At that time we had seen a visible difference in her skin color but no change in ferritin. we started chelation with desferal when our daughter turned 2. Now she is 8 and we are using Exjade.

Dear all,

My baby is now only 18 months 15 days but she taken 9 transfusions.Next week I want to test her serum ferritin to know the iron level and start chelation therapy.But if its not possible to start chelaton before 2 yrs old then what will I do?Next week she will get her 10 transfusion.So I am really worried...Please advice

Lokkhi,

Many patients do chelate before age 2, but you should check the ferritin before thinking about it. Chelation can and should be started very slowly with a very low dose when first beginning. Don't worry about it. Just report back with the ferritin score. I will advise you as needed.

Ok Sir, I will report..

Best Regards

Dear Andy,

Last night I got my babies ferriiin and HB report.

Please note,after 9 transfusions her serum ferritin is 459 and after 6 weeks of transfusion her HB is 10.03.Normally she get transfusion after every 6/7 weeks and then her hb we found 8 to 7.But this time it is good @ 10.03. Last 6 weeks ago she was taken transfusion when hb was 7 and now 10.03.Is there any changes?Pls advice.


Quote from: Andy on April 11, 2015, 09:26:09 AM
Lokkhi,

Many patients do chelate before age 2, but you should check the ferritin before thinking about it. Chelation can and should be started very slowly with a very low dose when first beginning. Don't worry about it. Just report back with the ferritin score. I will advise you as needed.

Dear Andy,

Please let me know your opinion about the above report of my baby.

Thank you.

Lokkhi maa,
As mentioned earlier by someone you may start chelating with very small dosage of deferasirox (defrijet, ansura). It is good that higher hb is maintained at transfusion, always try transfusion before hb drops below 9.
Atending target of feritine bellow 1000 is the main goal to every transfusion dependent thal.

Dear Jay,

Ferritin only 459 so I am not interested to give her Asunra before her 2 yrs old. As I know from this forum discussion, after 2 yrs old starting chelaton is better.My baby is now only 18 months 25 days old.What do you think ?

Lokki maa
That's correct. you got it right. but then i should say i did not got your question.
I waited for two yrs and then started deferasirox at low dosage and twice desferal injection in a month. I was living in india and doctors did not had proper knowledge. But now i know how chelaters work. What is right method to take those.
As my son grown up to 4 years he is on daily infusion of desferal during night when sleeping. I was waiting him to grow up to be able to co-operate with daily infusion. I would start small dosage at feritine level 700

Dear Jay,

Exjade or Asunra is easy to take as orally then daily infusion of desferal during night when sleeping.I saw the procedure in a clinic.So I think taking oral tablet is so much better.Bcoz it is also painful as transfusion..

Dear all,

Why the pictures of some country are same? Why doctors have no proper knowledge about this disorder?Why they are not taking it sereiously I can't understand...One of transfusion day of my baby one of patients husband said to me with too much anxious that her wifes health is not good bcoz of serum ferritin and doctor is unable to do anything.I asked whats the result?He replied it is 2200.I am also afraid.But that time I have no idea about ferritin.If I again met with them I must notice them about this forum.Hope their problem will be properly solve....Why doctors are unable to do anything for reduce feritin?How we accept it