Discussion Forums > Thalassemia Major

Unaware!

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Zaini:
Hello Ray,

I am truly glad you posted,welcome on the forum.

Which chelator did your doctor prescribe? There are variety of chelators available.

I don't know where you read it but its not true that only ferritin of above 4000 can cause problems,ferritin above normal levels is harmful,and if its persistent it will start loading in your organs which in turn will damage your organs,i am not trying to scare you,but you need to start chelation right away,my daughter transfuses every four weeks but her ferritin level is lower then yours,and we have so many thal majors here who transfuse regularly ,some have managed their iron levels very nicely,others are fighting to bring them down.

When you'll start chelating regularly and your ferritin will be lower,i think it will also help your hb levels to stay more stable,as free iron in the blood does damage red cells,and for this purpose all thals should be taking antioxidants such as Vitamin E ( natural ),IP6,green tea etc.

One more thing i'd like to suggest is Carao,You can read about it in these threads.

http://www.thalassemiapatientsandfriends.com/index.php?topic=1259.0

http://www.thalassemiapatientsandfriends.com/index.php?topic=1791.0

You should avoid taking high iron food in your diet as when hb is constantly low,body starts absorbing more and more iron from food,so that will just add to your iron overload.Once you start chelation and stay compliant there is no reason you can't bring your ferritin levels down.

Good luck with chelating and feel free to ask if you have any questions in mind.:)

Zaini.

nice friend:
Hi Ray ,
 :welcome2 , Its nice to see you posting , stay in-touch with us and keep posting ....

Best Regards
Take Care
Umair

Andy Battaglia:
Ray,

You need to be chelating regularly. Ferritin levels above 1000 will cause damage over time. In addition, it has been found that ferritin tests are not necessarily accurate in intermedias who do not transfuse regularly. Intermedias can have secondary iron overload caused by absorption of iron from food, and this iron overload often does not show in ferritin tests, so it would be best if you could get a liver MRI to assess the iron load. There are two oral chelation meds Exjade (Asunra, desirox, Osveral) and Ferriprox (kelfer, deferiprone, L1) and the injected chelator, desferal. You need to get a proper assessment of your iron load and then chelate accordingly.

Narendra:
Welcome Ray.


--- Quote ---You should avoid taking high iron food in your diet as when hb is constantly low,body starts absorbing more and more iron from food,so that will just add to your iron overload.
--- End quote ---

To add to the above comment, I would say it would be a good idea to drink tea with meals to decrease Iron absorption

Check this NIH trial - http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1727318

--- Quote ---Background—Black tea is known to be a potent inhibitor of intestinal absorption of non-haem iron at least in healthy subjects.

Aims—To investigate this effect in patients with genetic haemochromatosis, and, more importantly, the effect of regular tea drinking on the accumulation of storage iron in these patients over one year.

Patients—Investigations were carried out on 18 patients with clinically proven genetic haemochromatosis. For the study of storage iron accumulation, they were separated into a group instructed to drink a particularly tannin rich tea regularly with meals and a control group.

Methods—Intestinal iron absorption from a test meal was measured using whole body counting. Body iron stores were evaluated quantitatively by exhaustive phlebotomy, using haemoglobin, saturation of serum iron binding capacity, and serum ferritin for the assessment of body iron status.

Results—A significant reduction in iron absorption was observed when the test meal was accompanied by drinks of tea instead of water. In the tea drinking group, the increase in storage iron was reduced by about one third compared with that of the control group.

Conclusions—Regular tea drinking with meals reduces the frequency of phlebotomies required in the management of patients with haemochromatosis.
--- End quote ---

Manal:
Hello Ray

I would like to stress so much on Andy's point about the inaccuracy of ferritin readings in intermedias. Thsi was thoroughly discussed in the last thalassemia conference.

Also the role of supplements can not be ignored as it can contribute to the the overall health in addition to increasing the life span of the red blood cells. Please read the section of supplemetation carefully and good luck
manal

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