Thal Intermedia with Iron deficiency...

hi everyone,

my daughter was diagnosed with thal intermedia: compound heterozygous for HPFH 3 / codon 15 β0-thalassemia mutation

there isn't much information available on quality of life for patients with this condition as there aren't many patients with this condition. however, we learned at the appointment that she is iron deficient. upon talking to Eileen from the thalassemia foundation, i learned that's it is uncommon for thal patients to develop iron deficiency. currently she has been prescribed iron drops 2ml everyday. please share your wealth of knowledge on this topic. we plan to visit pediatric hematologists in India when we go sometime end of year. if you also know of any pediatric hematologists in the state of Gujarat, India please let me know as well.

please see attachment for lab results.

Her Hb has dropped from a year ago. Now, because her Hb has been more like that of a minor, due to the HPFH, iron loading cannot be assumed. Even her current Hb would probably not cause any iron loading, so it really is a possibility that she also has a mild iron deficiency, as seen in the iron panel results. If she has any trouble taking the prescribed iron, try iron water like this http://smile.amazon.com/Spatone-100%25-Natural-Supplement-Sachets/dp/B0019M7OCA/ref=sr_1_5_a_it?ie=UTF8&qid=1463704017&sr=8-5&keywords=iron+water

Andy,

thank you for your response. she is taking the iron drops like a trooper. she doesnt seem to have any issues with it at all..infact she's asking for more everyday  . a few months ago i contacted a hematologist in chicoago area who sees patients of south asian population and his nurse informed me that it could very likely be that she could either become a thal minor or, HPFH in the future. we are hoping that her HGB behaves more like a minor. since her Hgb dropped from a year ago would it be wise to try and give her wheat grass juice? would it help at all in increasing her levels?

HPFH does ameliorate most symptoms of thalassemia. I expect your child will continue with the phenotype of a thal minor. As she gets older, diet alone should be able to keep her iron levels normal. She does appear to be slightly deficient, but not severely, so it shouldn't be difficult to correct. Folate would also be advised.