Hello and thank you for this support site/forum

Hello all,
First of all, I just want to say thank you to whomever put up this site to help people with thalassemia find support and help with this disease.
I just want to say that this is my first time here and I never have before been too overly concerned about my thalassemia condition until now.
My doctor told me that my iron level is too high and to prevent iron overload, I have to take a small dose of ExJade to see if that will help bring the iron level down. I also read about the side effects of ExJade...which makes me hesitant to take it.     

I did my research online and found that there may be 3 natural chelating agents that I can take to help reduce my iron overload.

1. green tea ...I am starting to take the capsule form of the green tea extract
2. IP6....I am ordering it online and have yet to take it.
3. Curcumin (curcuminoids)...substance found in tumeric....I am also ordering it online and have yet to take.

Anyone care to comment on the above products or does anyone currently taking the above products? if so, are they helpful? including the ExJade.

Thanks in advance,
paints from NorCal.

Oh and by the way, I was diagnosed with hemoglobin E/beta thalassemia.  Not sure what this all really means but, I am very active individual in my 40s. I exercise regularly and I play a certain sport with lots of running involve.  when I was younger in my teens and twenty, I was much more active. I used to exercise a lot and played various sports. I began to noticed that my spleen began to grow big during my college years. I never gave it a second thought until now. My doctor told me that I have an iron overload even though I have never had a need for blood transfusion (knock on wood)...so, I guess I got to do something about it.
     

Have you ever taken blood transfusions?

No. I have not received any blood transfusion.
Andy, can you tell me if I can take IP6 and Curcumin along Exjade? Would it causes any serious drug interactions?
Thanks in advance.

No, they will not react with Exjade. IP6 (phytic acid) is already present throughout your body. What is your ferritin level and have you ever had a liver scan to determine the extent of the iron loading?

Andy,
Thanks for your response. My fe level is about 1700. and liver ultra sound is normal...just a kidney stone. I have no symptom. My doctor is ordering Exjade. haven't got it yet. Once I get it, I am thinking about taking it with IP6 and Curcumin. I just hope there is no drug interactions.

Paints,

Welcome to thalpal.  You should not have drug interactions taking IP6 and curcumin with exjade.  My 14 year old son has been on exjade since he was 8 years old.  We have patients as young as 2 years old on this forum taking exjade and doing very well:) 

Best of luck in reducing your iron levels! 

Sharmin

Sharmin,

Thank you very much for your feedback. I am very fortunate to have found this site. You all have been very kind, understanding and supportive. For that, I really appreciated it very much.

For everyone here who are affected by thalassemia in one form or another...whether you have the disease or are parents/loved ones of person(s) with thalassemia...I hope you all live a long, happy, enjoyable life and thrive.

We may have this disease but I think we can beat it by not letting it gets to us by living the life that is meant for us. Do the best we can with what we have.

I will keep you all posted when I received my Exjade and the result of my lab works when I see my doctor next month.

In the meantime, take care and go live your life to the fullest.

Andy  or  Sharmin or anyone that can answer this question.
What is the difference between Iron and Ferritin in your blood? I see that both are high but ferritin level is higher.
Here is my corrected blood result as of  2 months ago before take Exjade.

Iron, Serum:            177 ug/dl      expected range :    40-155
Iron Saturation:        82 %            expected range :     15-55

Ferritin, Serum:        1580 ug/dl     expected range :     30-400

TIBC, serum:            216  ug/dl     expected range :     250-450

Its been 3 1/2 weeks since first taking Exjade. I will get another lab test next week before doctor visit.
Also does anyone also experienced developing gall stone(s)? My doctor told me that the gall stones may be due to excessive bilirubin in the blood...as well as from cholesterol, fat and other stuff. Believe it or not my total cholesterol is only  85. HDL and LDL levels are also low.

My serum bilirubin level is 2.4 mg/dl    expected range: 0.0 - 1.2

Any thought?
Thanks in advance.

Serum iron is a measure of the amount iron that is bound to transferrin in the blood. This iron is readily available where needed in the body. Iron released from the breakdown of cells is stored in the serum ferritin. This iron is available if the serum iron is low. Otherwise, iron is sequestered in the ferritin, so it can do no damage as free iron. You want to see reductions in both. You should also have a liver MRI done to assess your true iron load, as this is not reflected in ferritin levels in non-transfusing patients. The iron loading is due to too much iron being absorbed from food. Following a low iron diet and drinking tea with meals can help slow down this absorption.

There is a high turnover of red blood cells in thalassemics. The breakdown of the RBC's does cause higher bilirubin levels and this leads to gallstones.