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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2018





54763 Posts in 5806 Topics by 6042 Members
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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: New Beta Thal Minor Here  (Read 2351 times)
Venusa
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« on: December 08, 2015, 11:00:17 PM »

Hello all! I'm new to the forum. I posted a question (thanks Andy for the response!) in the thal minor sub-forum, but thought I should introduce myself as well! 

Ever since I was a little girl (I'm now 30), doctors said I was iron deficient based on routine blood tests.  However, my mom always steered me away from iron supplements because she suspected that I (like she and my aunt) was a beta thal minor.  One day (almost exactly a year ago), I had the strangest episode where my body basically mimicked a stroke for two hours (my neurologist determined it wasn't though - it was a hemiplegic headache, combined with a good old-fashioned panic attack (I had a really stressful job at the time). My iron and B12 also showed up as low on my blood work.  So, I started taking B12 and multivitamins (with iron) from December 2014-April 2015.  My mom told me that the iron in the multivitamin might be bad for me.  I was stubborn, but made an appointment with a hematologist.  He was the first to run comprehensive tests that detected that I have beta thal minor.  He also told me to stop taking any multivitamin with iron.  I told my mom that she was right, and stopped the multivitamin.  I stopped taking the B12 as well since he said it's probably not necessary.  I did continue to up my iron intake from food though.  However, this might have backfired because my labs (for the first time ever) now show high iron saturation.  I guess I'm never "right."

So, yes, it took me almost 25 years to verify my beta thal minor-ness.  Through this forum, I am learning for the first time that some of my health "quirks" might not be me imagining things! (I had always thought that beta thal minor had no symptoms other than false positives for iron deficiency.)  I'm so glad this community is here!
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NeelD
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« Reply #1 on: June 07, 2018, 03:48:06 PM »

Hi I am also new to this forum and recently had stroke like attack but both CT and heart test were ok, after that I had bad headaches. Would like to know what symptoms did you have with hemiplegic headache and how long did it stay?
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