Diagnosed as a minor with minor <grin> - Thalforum

Chadwyck · July 3rd, 2008, 08:12 PM

Hello everone. I'm so glad to be in this forum where so many of you can relate to thalassemia both alpha & beta. For those of you who are major, many blessings to you. I have learned so much about this inherited disorder within the last 5 years of my life compared when when I was first diagnosed 32 years ago.

One thing I've always wanted to know... as a minor of alpha thal that I have, is there any possible way it can affect me now that I'm older compared to when I was a child? I find it strange that current doctors that found it after I already knew, they are more interested in my well being from late 20's until now. But before I was always told, "don't worry cause you don't have it bad." Does any of this makes sense? Cause for me it sure doesn't.

Also, how am I lacking calcium with all the calcium I'm getting from foods considering I've never had to have transfusions? This is what makes me have to wonder if I was incorrectly diagnosed from years ago.

Narendra · July 3rd, 2008, 09:49 PM

Hello Chadwyck,

Welcome to thalforum. I would like you to confirm that you are thal(minor) only. Do you know your hemoglobin levels? If you are Hemoglobin H you might want to keep your health in check. I have heard that with age, thal(minor) start showing symptoms.

49barclay · July 7th, 2008, 10:48 AM

Welcome Chadwyck,

I am alpha thal as well and wasn't given much information about it....still learning and wanting to know more. My hb level is 9 and normal is 25. I find iron hard to take because it is so hard on the stomach. I take folic acid and vitamin B12 and eat as healthy as I can especially since I turned 50 this year. Do you find you get tired easy and did you find out why you are calcium deficient? Kathy

Chadwyck · July 7th, 2008, 01:16 PM

Thanks both of you for a quick response. As for my hb level, I have no idea what it is. Most times I see a doctor that isn't my family doctor, he/she will check my blood and tell me that my hb is low... what ever low is. I used to be on folic acid when I was younger, but my current doctor told me I didn't need it when I was 22. Now I'm 36, I'm a lot more tired from doing nothing too breath taking like walking, or climbing the stairs. Yes, I know I'm minor. From what I was told, Hemoglobin H Disease may cause me to get very sick. I have been sick before, went to my family doctor and he keeps saying, "If I knew there was a medication for you I'd give it to you or prescribe it for you." And, I'm just tired of hearing that. I didn't think at my age now thalassemia would be catching up on me.

Alice · July 8th, 2008, 03:03 AM

Dear Chadwyck,
I am 53 years old and just recently found this site. I am a thal minor. I don't know what my hb level is. I do know that at a younger age (20's and early 30's) I did not have noticeable symptoms except for tiredness - took naps whenever possible. I am 53 now and get tired easier and more frequently, maybe because I'm 50 or maybe because of the thal or maybe both. Good luck. Take care.