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Author Topic: Study Finds Thal Minors do Have Symptoms  (Read 229152 times)
minxie
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« Reply #30 on: January 01, 2010, 07:32:44 AM »

Thanks Andy, very much appreciated. Just wondered if you know of anyone who suffers with tight chest breathing? Just wondered if it was just coincidental, or if it is actually associated with Thal?
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Prets
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« Reply #31 on: January 02, 2010, 04:36:16 AM »

A lot of times I need to make an effort to breathe deeply, I'm not sure thats what you are referring too. I think i do that when i'm exhausted or unwell in any way.
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Symptomatic Beta Thal Minor.
Moik
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« Reply #32 on: January 02, 2010, 10:50:46 AM »

I too feel like I am physically dead to the world...but the only thing ive been doing differently in the past few months is less exercise..because its wayyy to cold.. I am going to try and do some kind of cardio exercise in the house even though I feel as if I can sleep soon after I start them..but I think once they are done I feel a bit more awake.. I just have to stick with it to get back in shape!
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Andy Battaglia
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« Reply #33 on: January 02, 2010, 09:41:46 PM »

I think thal minor can contribute to breathing difficulty if the hemoglobin level is normally in the lower range, because it does cause some long term oxygen deprivation to the body because there is less oxygen-carrying hemoglobin circulating in the blood. I think learning to breathe deeply can help to counter this by increasing the efficiency of the lungs.
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Andy

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minxie
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« Reply #34 on: January 04, 2010, 04:27:56 PM »

Yeah, i usually only suffer with what i call a tight chest (which is what you guys are describing) when im shattered/tired, or if i'm stressed out. I agree though with the exercise thing, always do feel better once have exercised!! It's a bit of a vicious circle, the breathing thing makes you tired, but with out it, its tiring too!

Thannks guys for your help,

REALLY do appreciate it. Don't feel like it's all in my head any longer,

Hannah xx

p.s Hope you are all keeping well
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Prets
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« Reply #35 on: January 05, 2010, 07:56:58 AM »

I surely feel better with some light exercise, or a bit of physical activity throughout the day, else i start feeling really sluggish. Like I need to get my blood moving again!

I would like to know if there is a specific exercise that helps you, in terms of whole body fitness? I do some stretches, and spot jogging or leisurely walks. But I need to build up some strength, else I keep getting aches and pains.


One thing I was often told earlier - was that - I describe my symptoms unlike anyone else! So the people listening to me get the feeling i'm talking about some imaginary ailment they've never heard of!  :-)  Its a more polite way of saying that we imagine all our symptoms.     :-)


Luckily, after several years of an unimaginable number of doctors, I finally found a few who understand me and help me!

Once a problem is acknowledged, its only then we can start looking for solutions. 


God Bless Lisa,
and Andy,
and all of us here!

:-)
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Manal
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« Reply #36 on: January 05, 2010, 10:59:21 PM »

Quote
i usually only suffer with what i call a tight chest (which is what you guys are describing)

In my expierence, i find that when i am on an alkaline diet and stopping any sodas, the feeling of shortness of breath and palpitation decreases to a big extent

manal
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TKDgirl7
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« Reply #37 on: January 17, 2010, 11:26:37 AM »

Thanks for the article Andy, it is great to find a group like this!  I was diagnosed when I was 11 after being misdiagnosed with iron deficiency.  I have had problems with dizzyness and fatigue since I was a small child.  I started fainting when I was 5 which was what started all the testing.  I also get sick all the time.  My mother and grandmother also have thalassemia and have had the same issues so I knew my doctors just didn't know much about Thal.  My grandmother has had some transfusions and she gets B12 injections.  It is so validating for me to hear about this because when I used to get sick in school all the time, teachers would assume I was faking or I had mental health issues, it was so frustrating!  I have always wanted to do research on Thal minor, but I live in an area where it is very rare (North Dakota, USA).  Another struggle has been with endurance.  I am a martial arts instructor and I have struggled with running and anerobic exercise my entire life.  I have trained for months (running) and have watched my counterparts pass me up with much less effort.  I also find I get Delayed onset muscle soreness (DOMS) much more frequently (basically sore muscles after a workout) which makes sense because of less oxygen in my system.  I've been so sore I can hardly walk the next day! Anyone else have this experience?  I do find exercise helps my energy level a lot, but it is frustrating when competing to tire more easily than normal competitors. My Hb level has never reached 12, I usually sit in the 11 range or 10's if I have been sick or not eating properly.

Thanks Again, Crissy
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Bobby
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« Reply #38 on: January 18, 2010, 12:47:19 AM »

Welcome Crissy,

I have experienced similar effects during sports and physical training. I have Beta Thal Intermedia and currently workout on a regular basis. I order for me to gain any weight or improvement in performance I have to work twice as hard it seems and it takes twice as long to show. However I am rarely sore anymore. Feel free to ask whatever and again WELCOME!
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TKDgirl7
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« Reply #39 on: January 21, 2010, 08:27:25 PM »

Thanks for the welcome and information Bobby!
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jmarie
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« Reply #40 on: February 15, 2010, 10:37:03 PM »

Just Awesome! Thank you so much!

I too have been told by doctors there are no symptoms of TM.
I was about 26 years old and pregnant with my son when I was told I have TM. That was in 2004. Since I was assured by the doctors I'll live a normal healthy life with it....I haven't paid much attention to it until just recently.
I am tired all the time, have a hard time exercising(out of breath), and have bouts of anxiety.

 My results came in Friday and my Hemoglobin is 8.8. My Hematocrit 27.1.RDW is    19.5. Red Blood Cell Count is 3.03. My iron is 89. Iron Binding 253 and IRON SATURATION 35.

My doctor tells me to take a multi-vitamin and a iron supplment every day. Why do I need to take the iron when my iron is ok?

It's so frustrating that so many doctors are not knowledgeable about TM! I hope soon that this condition will be brought out of the darkness and into the light so I won't feel so lost!

I've read some pretty good advice here. I actually just picked up some B-12 and Folic Acid. I hope it makes a different and gives me some very much needed energy. Everyday I have to force myself to get things done! Most days I don't have the energy to even complete them. I am trying my best to eat healthy and exercise. Exercise has become such a struggle as of late. I used to be able to exercise 3 to 4 times weekly. Now I'm lucky if I get even 2 in there....

But I am so glad that I was directed to this forum! & if anyone has any advice for me...please don't hesitate! Thank you 


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Andy Battaglia
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« Reply #41 on: February 15, 2010, 11:16:58 PM »

Hi jmarie,

Doctors almost automatically throw iron at anemia regardless of the cause, and when it isn't iron deficiency, it doesn't help and over the long term it can build up to a higher than healthy range. Your iron levels are normal as you said. A multivitamin without iron makes more sense. Your hemoglobin level is in the lower range for thal minors so an approach that includes the nutrients besides iron that are necessary for building red blood cells, antioxidants to help prevent the damage that your excess alpha globin chains do in your blood, and possibly trying some natural hemoglobin inducers like wheatgrass tabs and resveratrol, may reap more benefits than taking iron. Also, vitamin D deficiency is a major contributor to tiredness and fatigue. If you do not get year round exposure to the sun, it may be advised to take vitamin D supplements. Researchers are finding more and more benefits to vitamin D on an almost daily basis, which isn't so surprising considering that D is necessary for the proper function of dozens of other nutrients.

There is no easy method but thal minors can optimize their health with proper nutrition and mild to moderate exercise. A diet high in vitamins and minerals and antioxidants, while also avoiding empty calories, is an important choice.
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Andy

All we are saying is give thals a chance.
jmarie
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« Reply #42 on: February 15, 2010, 11:47:20 PM »


Thank you for responding so quickly Andy!  8.8 is pretty low. I was surprised to see that but not shocked because I've been feeling really lousy. My hemoglobin was an 8 when I was pregnant. I wonder why it dropped so low now? I am not even pregnant!?

I am definitely going to be diligent about taking your advice!

Thank you so much 
   
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Zaini
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« Reply #43 on: February 16, 2010, 12:53:26 AM »

Hi Jmarie,

on the forum,almost every thal minor who joins this forum is as happy as you are i was too when i found this forum,never knew that my being tired all the time and low energy was related to it,but as Andy mentioned,vitamin D counts a lot as well,when i got my Vitamin D levels checked,they were really low,and a couple of Vitamin D shots and daily supplementation of Vitamin D made such a big difference for me,now i don't wish that my day should end at 12 noon rather then at 10 PM  .

Hope this helps,

Zaini.
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^*^Xaini^*^
jmarie
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« Reply #44 on: February 17, 2010, 03:29:32 PM »



Hi and thank you for the welcome Zaini. I faxed this forum to my doctor, plus I faxed the study that Andy posted. She is referring me to a hematologist and she ordered the blood test to check out my Vitamin D levels.
She said that my hemoglobin levels were only 2 points lower than norm. The norm is considered 12-16 for women right? My hemoglobin was 8.8. Seems to me it's more than 2 pts. She also stated that I should come up with a better form of communication besides a fax. Is it me or does it seem that my doctor is annoyed?
Hmmm....curious. Just seems she wants to right it off as "no big deal."

Well...I hate to burst her bubble but it is a bid deal for me! I hate feeling tired and short of breath all the time!!
Another thing that I've learned from this looking on the internet is patients with thal can have an enlarged liver or spleen. When I read this I thought...well!! No wonder!
A couple years back I had abnormal results of a HEPATIC PANEL. My doc sent me to have a ultrasound of the liver. My results came back that my liver is larger than normal. She said no biggie....I just got a larger than normal liver than others is all.
 
She didn't mention the thal minor having a link to that. I figure she wouldn't of known that anyways since doctors have little knowledge of thal minor.

Maybe I might get more help when I see this hematologist. Whatever I find out...I'll share it here as well.

Thank you!
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