Hi everyone. Thank you for this site.

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Hi everyone. Thank you for this site.
« on: October 16, 2008, 02:13:08 AM »
I have been trying to find out more on Beta Thalassemia and came across this great site. It is nice to know there is a place to go to talk to others for advice and support. I still have questions that I just can not seem to find answers for and every day it seems when I mention I have this issue I am asked if I have a certain sympton. oddly enough I say yes but yet when I look online for these symptons I find nothing. So I hope to find my answers here =)

I am so glad I found this site, thank you again!

Lady Ann~

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Offline Zaini

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Re: Hi everyone. Thank you for this site.
« Reply #1 on: October 16, 2008, 02:43:31 AM »
Hi Lady Ann,

 :welcomewagon on the forum,do tell us more about yourself and post the questions you have in mind.

Zaini.
^*^Xaini^*^

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Offline Sharmin

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Re: Hi everyone. Thank you for this site.
« Reply #2 on: October 16, 2008, 02:46:24 AM »
Hi Lady Ann,

Welcome to our site  :hiyaboy

We're here to help you find answers to your questions and we are happy to have you!!
 :welcomewagon


Sharmin

Re: Hi everyone. Thank you for this site.
« Reply #3 on: October 16, 2008, 02:56:09 AM »
Oops let me tell you about myself =)

I am a 34 year old female. I found out about my blood disorder the same day I found out I had Epilepsy. I inherited mine from my father who also suffers from his. At the time I found out about Thalassemia not to many really knew to much about it. All I was told was a type of Anemia so I had been  on and off iron pills most of my life. Recently I found out these were bad for us so I have stopped taking them.

I do not know what type of Beta I have but I do have my lab results and no one can really tell me what I have.
I am always tired
no energy
Depressed most of the time and I have a wonderful life besides having fertility issues.
I have a "skin crawl" issue which I was told was a sympton where randomly all over my body I get little tickles or itches constently.
I also seem to get aches and pains thru out the day that come and go and it feels like on my bone.
I have breathing issues. sometimes due to anxiety and other times just out of the blue. and I am not a smoker. My heart feels like it skips beats or I can't seem to get enough air.

These are what comes to mind at the moment. Whenever I give my medical history the nurses usually bring up another sympton that I have so these are just a list of what they either have told me are a sympton or I have read that I do have.

So I am curious if others have any of these symptoms.
Thanks for your time =)

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Offline Andy Battaglia

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Re: Hi everyone. Thank you for this site.
« Reply #4 on: October 16, 2008, 03:02:31 AM »
If you like, I can take a look at your test results. You can post then or send them as a personal message. Much of what you say points to thal minor but seeing the lab results would be more definitive. Did you also have a hemoglobin electrophoresis test done?
Andy

All we are saying is give thals a chance.

Re: Hi everyone. Thank you for this site.
« Reply #5 on: October 16, 2008, 03:31:10 AM »
I am going to say no on that test Andy. I am not familiar with it. what does it require and do.

As far as my results here is what they ran

WBC fluctuates from normal to above
RBC  5.71
HGB  11.2
HCT  35
MCV  61.2
MCH  19.7
MCHC  32.9
RDW  16.9
Hyporchromia  Slight to Moderate
Microcytosis     Slight to Moderate
Anisocytosis     Slight to Moderate
Poikilocytosis    Slight
Ovalocytes       Few
Basophils          Few
Target Cells      Few

All are Abnormal

I have had a cbc ran a few times in a year and the numbers stay pretty close

Hemoglobin A  =   91.8   Low
Hemoglobin A2 =   6.30   High
Hemoglobin F  =    1.9    Normal
Ferritin           =    62.1  Normal
Iron               =    123   Normal


Vitamin b12   =      324  Normal
Folate           =      5.9   Normal

I am heterozygous for the codon 39(C-T) mutation  says to go for genetic counseling

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Offline Lyanne

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Re: Hi everyone. Thank you for this site.
« Reply #6 on: October 16, 2008, 04:43:51 AM »


       Hi! LadyAnn Welcome to the family...... :welcomewagon :welcomewagon.
LYANNE :yahoo

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Offline Andy Battaglia

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Re: Hi everyone. Thank you for this site.
« Reply #7 on: October 16, 2008, 05:15:29 AM »
The electrophoresis is the test that gives the results as percentages of different hemoglobins, and the results do confirm thal minor even without the DNA test. So many of the symptoms you mention are reported by other thal minors but doctors usually don't associate them with thal. You can learn more about thal minor in the post at http://www.thalassemiapatientsandfriends.com/index.php?topic=1575.0

Has your hemoglobin level always been around 11 or have you had periods when it dropped lower? Do you take any supplements now?

This is something I have been recently asking minors who experience symptoms similar to many of yours and it is something that piqued the interest of one of the top thal cardiologists in the world when I brought it up to him at the Singapore conference. Many of the symptoms that thal minors report are the same as symptoms of pulmonary hypertension (PHT or PAH). It is known that thal intermedias have a very high incidence of PHT and there is a possibility that minors may also have a higher than normal rate of PHT, and the doctor agreed that this may be worth investigating in thal minor. Even mild cases of PHT can cause symptoms and PHT is treatable. To top it off, as it may also relate to you, is that there seems to be some connection between epilepsy and PHT. Ask your doctor if you can be tested for PHT.

There may be some supplements that can help correct some of the deficiencies that are often found in conditions of anemia that are not iron related. Folic acid, B Complex, vitamin E and D (and C for minors), magnesium, zinc,  L-carnitine and additional anti-oxidants may be of some value.
Andy

All we are saying is give thals a chance.

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Offline Annie

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Re: Hi everyone. Thank you for this site.
« Reply #8 on: October 16, 2008, 09:54:54 AM »
welcome
welcome ladyAnn
Nice to see you here.
take care
« Last Edit: October 16, 2008, 11:51:23 AM by anie »
I AM  SUFFERING FROM THALA MAJOR

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Offline nice friend

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Re: Hi everyone. Thank you for this site.
« Reply #9 on: October 16, 2008, 10:39:31 AM »
Hi LadyAnn ,
 :welcome to the community ...
i hope you will find this community real helpfull ...
soo keep posting and keep asking .. i hope you will find all the answers of your questions here. ...

Best Regards
Take Care
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

Re: Hi everyone. Thank you for this site.
« Reply #10 on: October 16, 2008, 11:39:43 AM »
Thank you everyone for the warm welcomes =)


Andy, From all the recent CBC's I have done the HGB does seem to stay very close to 11, I am going to check into the other tests and see how I need to go about getting those done. Thank you for your help. =)

 

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