large stomach, heart failure

hi i was just wonering if any of u other thals have large stomachs, is it a characteristic of thal, i thought it was coz i had desferal there? does any1 else have a big stomach (and i dont mean from eating!) or do u thnk i just have 1 coz i have coeliac disease.

also i wanted to knw more about heart failure in thalassaemia? why does it occur, does it happen to all thals? is there any precautions we can take?

Hi Eesha,

Both of these symptoms that you have mentioned are mostly due to Iron overload due to lack of chelation.

Our Liver and Spleen store the excess Iron that comes with the transfusions. Eventually they get enlarged if not properly chelated and this gives the enlarged bellies of Thals who don't chelate properly.

Once the liver maxes out it's iron storing capacity; the excess iron starts to get stored in other organs such as heart and the endocrine glands and eventually damages them; leading to organ failure.

Hi eesha,

Heart failure in thals occur due to iron overload in heart,as Sajid explained that once the liver maxes out it's iron storing capacity,the iron starts to get stored in other organs including heart, so the only precaution we can take against heart failure is chelation ,or may i say strict schedule of chelation,according to what your ferritin levels are,that way iron would not be stored in heart,And i believe supplementation of megnesium and calcium is also necessary for keeping your heart well functioning,do share with us what exactly your ferritin level is,which chelators are you using?

ZAINI.

The thing is my chelation has always been very good, doctors have always been pleased with me. but i cant understand then why i seem to get all the problems that bad chelators should have such as growth problems, and enlarged liver.
my ferritin used to be constant around 1200, although i did get it to around 800 when on desferal, but now i am on exjade so it has creeped up over a year to 1500. Now i am on an increased dose so hopefully that should reduce my ferretin.
when i told my doctor about about the large sotmach he said its noting to do with my thalassaemia its do do with eating! so i dont knw! but it is good to talk to all u ppl coz then i get different viuews.
thanks guys!

My daughter has slight tummy, doctors are not concerned as they can't physically feel her Spleen and its definately not iron overload. On the other hand as a parent we do worry sometimes though.

Hello eesha!!!!

To try and answer your questions...Some thals do have larger stomachs than others, might be because of a large spleen or a inflamed liver as sajid said...but we here in australia have patients who have not got a large stomach at all...

Heart failure is often cause by non compliance of wearing the pump or chelation...The body can only take so much and if we mistreat it, it will begin to fight back and you will have problems like heart failure and liver failure and other problems...But some thals just have heart failure due to another cause not caused by thal...Could be another problem altogether..

I dont agree with the doctor telling you that its something to do with your eating...cause i do have a slight stomach and its not got to do with my eating habits..its because of my liver...

Zaini has a good point in mentioning supplementation of calcium and magnesium it helps with the bone growth as well...Also Vit D is helpful too...

Hope this helps..

I do have a bit of a large liver but my spleen is ok, i dnt understand tho i have always been an excellent chelator. i am supposed to take calcium and vit d for my bones but i find the chewable stuff so hard to take.so does magnesium help reduce size of ur stomach???

No magnesium doesnt reduce the size of your stomach...It helps in  the absorption of the calcium if your body does not absorb it well...

what other calcium supplements are available where your from? Do they come in tablet form? or there are some water soluable ones too...That fizz in water and you drink it like a drink...

Your enlarged liver could be from various reasons...I am no doctor...but you should enquire about that with your doctor who ever you see...

Hope this helps.