Recently diagnosed with HbH disease-what can I do?

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Recently diagnosed with HbH disease-what can I do?
« on: July 11, 2017, 09:35:21 PM »
Good afternoon! I'm glad to have found this site.  I grew up in Vietnam and healthcare wasn't available and my family immigrated to the US when I was 8 years old (am now 29). I had always been a sickly child since birth but parents figured its because I was premature. Over the last two year I was feeling more fatigue and long story short, I was referred to a hematologist who tested me for thalassemia. The genetic test came back positive for HbH disease.

I had my first blood transfusion last month and at the check-up two weeks ago, my Hgb level was at a 9. I feel as though I shouldn't feel this weak and I'm uncertain how things will progress as I was diagnosed late and my condition seems to not improve without transfusions.

Was anyone else diagnosed late? What has your life been like? I wanted to pursue medical school but I feel as thought the poor immune system and fatigue will set me up for failure. What can I do to improve how I feel besides folic acid supplements?

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Offline Andy Battaglia

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Re: Recently diagnosed with HbH disease-what can I do?
« Reply #1 on: July 11, 2017, 09:58:16 PM »
How much folic acid are you taking? It's best to take folate at a high dose. Folate works better than folic acid and you should be taking 2-5 mg daily. Typically, only 400 mcg are prescribed. Other supplements like B12, B Complex, L-carnitine and magnesium may also help. Vitamin D should be considered, as well for the tiredness. I'm taking 50,000 IU weekly. Also, avoid broad beans, like fava beans and exposure to chemical fumes of all sorts, including scented household cleaners. These can cause your red blood cells to break down prematurely.
Andy

All we are saying is give thals a chance.

Re: Recently diagnosed with HbH disease-what can I do?
« Reply #2 on: July 12, 2017, 02:28:23 PM »
I've been prescribed 1mg daily but the hematologist have said I can take more. I did read through the supplement topics and have ordered the Vit E and B complex from Amazon. I have Vit D 50,000 IU already so I'll add that on. Thank you!

 

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