Discussion Forums > Thalassemia Major

Unaware!

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Dori:
 :welcome

I have the some questions as the previous posters. :)

Take care, Dore

SIL:
Hi Jade, Umair, Lyanne, Sharmin and Dore!
First, tanx a lot 4 ur replies. I'm overwhelmed! :hugfriend
I'm from Coimbatore in South India. I have asked my brother-in-law to check out this site and he is now a member-Ray.  Hope u guys will guide him correctly. He is of the notion that chelation drugs have to be taken only when the levels go too high.
He refuses to take any drugs, which I feel is foolhardy as these will help him lead a better life. I will ask him to post his stats so that u all can advice him.
I heave a sigh of relief knowing that I have led him to the right place, into ur safe and knowing hands. God bless u all!
 :biggrin

Zaini:
Hello Sil,

Thats great to know that he has joined the forum,if he has been transfusing for years,and regularly ,his ferritin must be high,how high ? only he can tell us.

Ray,

I hope you would post soon :) .

Zaini.

Sharmin:
Sil,

You have done a great thing.  Ray we look forward to your posts. 

Sharmin

Ray:
hi to everyone here,
                  thank you for responding to my sister in law's questions, I am Ray the one she was talking about. I was diagnosed as Thallasemia intermedia at the age of 1 1/2 yrs and have been receiving transfusions every six months when I was a child and subsequently once a year as i grew up, my haemoglobin so far has been between 5.5 to 8.0 and whenever I fall ill due to fever or any infection it reduces and thats when I go for a transfusion. since my spleen was removed my hb level has been around 6.0 to 6.5 for most of the time and when it drops we transfuse with 2 units.
The haematologist suggested a ferritin test in 2007 which was 1400 at that time and more recently I had a transfusion of 2 units of blood in october 2008 which I have every year but it reduced because of fever and dropped to below 5.2 so we transfused in february 2009 before the transfusion the ferrittin level was 2109,bak in 2007 i was prescribed an iron chelating drug to be taken regularly with the doctor mentioning there would be symptoms of vomiting and some pain but the vomiting was too much and I was becoming weaker and more sick so I stopped taking it, I read in a medical website that ferrittin levels in excess of 4000 only cause problems, correct me if I am wrong. at present i take folic acid to maintain my hb levels. I appreciate your replies and welcome your suggestions. I am confident about myself and try to enjoy whatever I do but my loved ones are concerned about my situation, I hope you can encourage SIL to feel relaxed about this issue. thank you and God bless you all. 

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