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theresa

new to the site
« on: May 06, 2006, 03:36:53 AM »
hi everyone
my name is theresa and i have just found this great site. i live in new south wales australia and i have known that i have thalassemia minor for about 31 years (i am 35 now). both of my parents have it, my younger brother has it and my 15 year old son has it. i have been trying for years to find doctors who can tell me how it affects my body and all the doctors have told that it doesn't affect my body at all. no doctor has been able to tell me why i feel tired and lethargic, why i am thirsty all the time and my head aches so much. i believe and have always believed that the blood disorder plays a part in this and i am wondering if other people have these issues too.
regards
theresa
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Offline §ãJ¡Ð ساجد

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Re: new to the site
« Reply #1 on: May 06, 2006, 06:22:40 AM »
Hello Theresa,

Welcome to the site!

Thal. Minors can live a pretty normal life. The fatigue and headaches can be due to low HB, but being thirsty all the time is not directly linked to Thal. It can happen if Iron overload in Thal. Major causes Diabetes, but I doubt that it could happen to Minors.

All you need is a good healthy diet and fresh/fun environment.

Take care!
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Offline Narendra

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Re: new to the site
« Reply #2 on: May 06, 2006, 02:10:28 PM »
Hello Theresa,

Welcome to the website. It is surely a great place where we can learn about Thalassemia. I too am a Thal(Minor) and did NOT find it out until I was 32.

Sajid is right -> Thal(Minor) can live a normal life, but I also have some complains as you do. I sometimes do feel that I have lost energy and if I overexert myself, I can feel lethargic. I have tried taking small naps(5 minutes) when i feel tired and that has helped. Once, I take a small nap, I get a lot of my energy back. I don't know if any Thal(Minor) sees the same issue.

FYI, I have NOT been having any problems with head aches and I don't feel thirsty. I am NOT sure if Thal is related to this.

Although, a lot depends on the life style. Some live a stressful life and some live a fun filled stressless life. So, i would say a lot of factors are involved in it.

I do NOT check my Hemoglobin though. Sajid, What would you say is low HB for us and would lead us to feel tired?

But, I think as Sajid says fun and fresh environment is something which might help us relieve our stress.

-Narendra
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Offline Andy Battaglia

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Re: new to the site
« Reply #3 on: May 06, 2006, 08:49:38 PM »
Narendra,
Was wondering if you've ever tried wheatgrass. I use Dr Chris' wheatgrass spray and I haven't felt anemic since...as you know I am not a thal carrier but have had recurring bouts of anemia for many years. It took me awhile to realize it but i've been much better since I was on the spray. It's also caused an improvement in my skin dryness. Might be worth a shot to try for a few months and see if your energy level is any better. I get by on 5-6 hours sleep a night so something is working.
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Andy

All we are saying is give thals a chance.
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Offline Andy Battaglia

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Re: new to the site
« Reply #4 on: May 06, 2006, 08:51:36 PM »
Theresa,
Dr Chris is in Australia and you can find the wheatgrass spray and shots at www.wheatgrassactive.com
You also might consider trying it.
We have a lot of Aussies in our group so I'm sure you feel at home here.
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Andy

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theresa

Re: new to the site
« Reply #5 on: May 07, 2006, 02:22:00 AM »
hi and thanks for your replies
no, i have not tried wheatgrass but i do eat a very healthy diet because i have many food intolerances which dictate what foods i can eat. i can't have anything with alcohol, caffiene, dairy, citrus or yeast so i eat fresh fruit,vegetables and meat and a small amout of rice products. i try to do about 20 minutes a day on an excersise bike or a gym ball. apart from the headaches and the thirst, i do lead a normal and happy life. i enjoyed reading your comments and i am greatful that you took the time to answer my question. i will give some thought to the wheatgrass and i will get some more medical advice about the headaches. they may be just a genetic thing because my parents both suffer from them and so does my brother and my son (all of whom have thal minor). perhaps this is just a coincidence
regards
theresa
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Offline §ãJ¡Ð ساجد

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Re: new to the site
« Reply #6 on: May 07, 2006, 06:24:48 AM »
Quote from: Narendra on May 06, 2006, 02:10:28 PM
I do NOT check my Hemoglobin though. Sajid, What would you say is low HB for us and would lead us to feel tired?

Well, HB anything below 11 is not sufficient to meet the demand of Oygen in the body and thus results in low energy level.

I have a low activity lifestyle and I didn't feel a thing even my HB went as low as 2; except when I stressed myself such as climbing upstairs.

I notice that when my HB is 10 or above, I get don't get tired climbing up two story stairs and vice versa. (My instant HB meter :biggrin)
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Offline Andy Battaglia

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Re: new to the site
« Reply #7 on: May 07, 2006, 09:32:32 PM »
Theresa,
This may just be coincidence but you have so many of the same problems with foods that I used to have. I couldn't eat yeast for several years or citrus or alcohol...all this changed after I got my thyroid treated. have you ever had yours checked? mine was severely underactive and after some time on thyroxine I found that I could eat everything again. It's just a thought and may be completely coincidence...but if you have any other symptoms like no appetite and thin hair...have your thyroid function checked immediately...I could've saved myself a lot of suffering if I had done it earlier.
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Andy

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Offline TruBlue

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Re: new to the site
« Reply #8 on: August 02, 2006, 03:14:02 PM »
Hi Theresa,

Wheetgrass worked wonderfully for my wife but the spray may indeed be a better alternative than freshly squeezed grass. I became overly enthused by her posative reaction to the occasional shot of wheetgrass when shopping, bought a kit and a juicer and had her taking 200ml a day for quite a while {Shes a Thal Major} Anyway my plan backfired dramatically when she became allergic at such a high intake level and she can't even take the tablet form now as she throws up immediately afterwards.

On a brighter note, Pete Sampras was a Thal minor as far as I know and apart from bouts with lethargy he certainly seemed to get along pretty well. 
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Offline Andy Battaglia

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Re: new to the site
« Reply #9 on: August 02, 2006, 03:34:56 PM »
Has your wife tried Dr Chris' wheatgrass shots? They are much easier to take and have none of the fiber or plant material. They are also very effective.

Pete Sampras hid his thal when playing as he was afraid opponents might try to drag matches out in an effort to tire him. As you said he does get some lethargy but he is also a shining example of what can be accomplished by hard work and determination. I think it is also a good lesson about the value of exercise.
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Andy

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Offline Danielle

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Re: new to the site
« Reply #10 on: August 02, 2006, 06:18:40 PM »
Welcome to the forum, Theresa!   :biggrin

It's great to have you here.  I hope you find the answers you need.  I do believe that having Thal Minor will cause all those symptoms.  Have you tried seeing a Hematologist that specializes in Thal?
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