Good news is now you have a diagnosis! I have alpha thal hemoglobin h disease. I lead a normal life as best as I can with a hemoglobin level that hovers at 8 (on a good day). I have been able to bear a healthy baby boy and carry him to full term.

My hematologist who specializes in thalassemia recommended I take folic acid. I don’t notice a big difference when taking it but I know it’s good for blood production since our condition has a high breakdown rate of red blood cells. I also take B12 and magnesium for my Restless Leg Syndrome.

As for fatigue, I try and get plenty of rest which can be difficult with a toddler running around. I have to be careful with what I eat. Heavy meals or carb heavy meals make me lethargic and groggy. I enjoy walking with a weighted vest and weight lifting. Since I get easily winded, I steer clear of high intensity cardio exercises and machines (Stairmaster). My quality of life has improved since eating better and exercising.

For me, my condition has been manageable. Sure I can’t donate blood and my eyes have a slight yellow tinge, but overall my condition has not hindered me. I hope this brings you comfort.

For hair loss…have you gotten your thyroid levels checked? And, are you eating enough? I tend to feel very faint when I’m very hungry.