Recently Diagnosed

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Offline Audryna

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Recently Diagnosed
« on: October 23, 2009, 03:06:44 AM »
Hi, very pleased to meet you all.

My name is Audryna and I was recently diagnosed with Thalassemia. I am waiting on tests to be confirmed to know  exactly which type.  I am in my thirties and do not remember the last time I did not feel tired, worn-out, fatigued.  I am glad to know what is happening to me but also very frightened to see what type of the condition I have. :'(
I have been through so may tests and 'maybes' but still it's never pleasant to find out something is wrong.  A couple of weeks ago I was so close to passing out, short of breathe, clammy feeling, tingley sensations, etc. that I was brought to the Urgent Care center with heart-attack worries and turned out I was 8.6 RBC

I have heard that the Thalassemia minors are not symptomatic so this is causing me to worry.

Any words or advice appreciated.

Glad you are here (and I am here, too :)

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Offline Andy Battaglia

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Re: Recently Diagnosed
« Reply #1 on: October 23, 2009, 03:23:14 AM »
Hi Audryna and welcome,

If you have not discovered this thread yet, please read this report. The entire report is attached to the post. It is the first ever study of symptoms in thal minors and doctors have at long last made some admission that minors do have problems. Much more study is needed but at least we have a start now.  http://www.thalassemiapatientsandfriends.com/index.php?topic=2769.msg26748#msg26748

You can have a positive effect on your own health and possibly even get a small increase in hemoglobin level with the addition of certain supplements to your daily routine. We have talked endlessly about this here and will continue to bring up whatever can help, so stick around and help yourself out. Our section called Diet, Nutrition and Supplements has a wealth of info, so it's a good place to start.
Andy

All we are saying is give thals a chance.

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Offline Zaini

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Re: Recently Diagnosed
« Reply #2 on: October 23, 2009, 05:33:46 AM »
Hi Audryna :welcome

Contrary to what doctors believe,thal minors do have symptoms,i am a thal minor myself and i get tired easily,sleepy and sometimes even dizzy,i have headaches,and those clammy feelings and tingling sensations you are talking about,and if you'll read through the forum you'll find that most of the minors complain of same symptoms.

So what should you do,first confirm trough tests that you have thal minor,which i guess you have,then adding supplements like folic acid,wheat grass,B-Complex vitamins to your routine will help you tremendously,when i started taking B-Complex i felt a clear change in my energy level,but the break through came for me when i got checked my Vitamin D levels and i was very very low,i was advised to take Vitamin D shots and supplements,i have taken two shots till now and i am taking a vitamin D supplement daily,and let me tell that 60 to 70 % of my tiredness is gone,my leg cramps are gone,and i feel much much better,so you can request for Vitamin D testing too,unless you go out in sun a lot.

Hope this helps :) .

Zaini.
^*^Xaini^*^

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Offline Audryna

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Re: Recently Diagnosed
« Reply #3 on: October 24, 2009, 01:10:04 AM »
Thanks so much!  This is the first I have heard about the wheat grass.  I wonder if it is similar to chlorophyl?( I am sure I mis-spelled that)  I read jsut last night that chlorophyl is suppossed to bring up the hemoglobin count. I will definitely do some more research on that and try the wheat grass, too. I have some of those supplements, and I take a daily multi, but looks like there are a few things to pick up asap. Glad to hear about the success you are having with Vit. D. I am currently waiting for results for my Vit. D levels.

I hope life is treating you well and thanks for the welcome and advice! :hugfriend

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Offline Andy Battaglia

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Re: Recently Diagnosed
« Reply #4 on: October 24, 2009, 03:54:50 AM »
Wheatgrass is loaded with chlorophyll if you take it in its fresh form as a juice or as a dry tablet (much preferred to the juice taste-wise), but wheatgrass has other properties also that cannot be explained by chlorophyll. In fact, the wheatgrass extract contains no chlorophyll but still it maintains the same properties of fresh wheatgrass. It really helps a lot of people, including myself and I am not thal at all. One other suggestion is your multi should be iron free unless iron deficiency has been established by a group of tests called iron studies. Iron deficiency cannot be established by your hemoglobin level alone, especially in thal minor, and excess iron can do loads of damage to your organs, so only take iron if you know for a fact you are iron deficient.
Andy

All we are saying is give thals a chance.

 

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