Hello - new here :)

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Hello - new here :)
« on: October 28, 2009, 09:46:00 PM »
Hi, all!  I just discovered this board while trying to do a little research on thalassemia.  My mother and maternal grandfather are both carriers, and I was officially diagnosed in 2003.  The hematologist who dx me said that my only concern was future pregnancy - if I tried to have children with another carrier, my body wouldn't allow me to carry the child.  It appears that that's not necessarily the case anymore - but I'm not looking to have a baby anytime soon.

I'm here today to ask opinions.  I realize nobody can diagnose me via computer and I am going to another hematologist next week, but I wanted some opinions from others who are also carriers.  I'm not sure which type I am, which is one of the questions I'm asking the doc.  The reason I'm going to another hematologist is because each time I have blood work done, I get a very concerned phone call regarding my blood count levels.  Even when I've explained that I'm a carrier, I still get a call.  Last blood work I had done was in June of this year and my dr said something to me about it and I told him about the thalassemia and he said "What are you doing with a mediterranean blood disorder?!"  (I'm a 5'10" caucasian female of English, Irish and Scottish descent, that I know of.)  He checked my heart rate and said my heart beats faster than normal - then did an EKG, which was normal other than the elevated rate.  He then gave me an injection of Procrit.  He seemed very worried.  After talking to another doctor, he put me on Metanx. 

Recently, I began seeing a personal trainer.  We noticed that anytime I did anything that elevated my heart rate, I would get nauseous and weak and feel like I couldn't breathe.  I told her I've never been able to run, within 1/2 mile I feel like there's something wrapped around my ribs.  I can speed walk okay, and enjoy doing it, but running has never worked for me.  After a couple of more intense exercises we did the other day, my heart rate was over 180. 

This is getting long so I'll cut to the chase.  Basically, is there anyone else who has these problem?  Sometimes I can start off with a ton of energy, and then crash.  And when I crash, I mean I sit down and kind of stare off into space.  I also have a lot of anxiety issues.  My mom has anxiety and depression and was recently diagnosed with osteo-arthritis and fibromyalgia.  A few things I came across hinted that these are tied to thalassemia.

The only blood work record I have at the moment is from a test I had in June 2007.  The abnormal ones are as follows:

Hemoglobin:  9.9
Hematocrit:  30.1
MCV:  69.6
MCH:  22.8
RDW:  16.5
Microcytes:  2+

I know this is a lot of info.  Thanks for any help/suggestions you may have.

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Offline Andy Battaglia

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Re: Hello - new here :)
« Reply #1 on: October 29, 2009, 03:39:33 AM »
Hi Jena,

The test results do look like beta thalassemia minor and the hematologist may want to do a hemoglobin electrophoresis test to verify this. Your Hb of under 10 is typical of many thal minors and does lead to symptoms of anemia. I imagine that the Metanx, which is a combination of vitamins that provides vitamin B-6, vitamin B-12 and the active form of folic acid, is an attempt to boost your Hb level some. Some nutritional testing may be of value to identify areas where you are deficient, and in addition to the B-12 and folate tests that may be run, a vitamin D test may be of value, and with your family history of osteo, calcium and magnesium levels should be tested. Magnesium is also important for red blood cell development and proper heart function, so it becomes an important nutrient in thalassemia. Your mom may benefit from some nutritional therapy also.

For the results of the first study done on thal minors, see our thread at http://www.thalassemiapatientsandfriends.com/index.php?topic=2769.msg26748#msg26748  The complete study is attached to that post. It was the very first time that anemia symptoms in thal minors was acknowledged, so don't expect a lot of familiarity about the problems of minors from most doctors.

We also have an entire board dedicated to proper nutrition, called Diet, Nutrition and Supplements. You will find much information about various things that can be done to optimize the heath in thal minor. Nutrition is very important. You may never feel normal, but you can do things to improve your health.
Andy

All we are saying is give thals a chance.

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Offline nice friend

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Re: Hello - new here :)
« Reply #2 on: October 29, 2009, 02:13:45 PM »
Hi JenFar ,
 :welcome2 ....

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: Hello - new here :)
« Reply #3 on: October 29, 2009, 03:41:43 PM »
Hello Andy and Nice friend :)

Thank you for the information and the welcome.  I am currently taking a vitamin D supplement (Caltrate Plus, twice a day) as well as a women's multi-vitamin, B-complex and fish oil capsules.  Hopefully when I speak with the doctor next week and he runs my tests he can provide more information.  Mostly I'm curious about what ways this may or may not be affecting mine and my mom's bodies.  I feel fortunate that there seems to be more info out there now then there has been in the past and hopefully with a proper education about it I can avoid any potential issues with my health in the future.

Thank you again!

Re: Hello - new here :)
« Reply #4 on: October 29, 2009, 03:45:14 PM »
Something else I have that I'm wondering is attributed to thalassemia is heart palpitations.  I can be sitting perfectly still and it's like my heart starts fluttering in my chest, then beats really hard for a beat or two, then feels like it hesitates and starts beating normally again.  I've told docs about this in the past but my last EKG was normal so I've attributed it to anxiety.  My mom has the same thing happen to her.  There is no pain associated with it - just a moment of panic when it happens.  Anyway, something to think about!

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Offline Sharmin

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Re: Hello - new here :)
« Reply #5 on: October 29, 2009, 03:47:19 PM »
Welcome to thalpal JenFar!

I am a thal minor as well, and I have also experienced heart palpatations.  Perhaps this is associated with anemia and some degree of hypoxia that we all experience. 

We are happy to have you here and I look forward to reading more posts from you :)

Sharmin
Sharmin

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Offline Emby

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Re: Hello - new here :)
« Reply #6 on: October 29, 2009, 07:03:56 PM »
Hello JenFar,

Have you had a thyroid test ?...alot of your symtoms may be related due to hypO/hypErthyroidism.

Emby

Re: Hello - new here :)
« Reply #7 on: October 29, 2009, 07:41:39 PM »
Thank you, Sharmin  :biggrin

Emby - on the test results from 2007 there is a thyroid profile that says:

TSH (ultrasensitive) 1.580

Nothing was said to me about my thyroid though so I assumed that meant everything was fine.  My blood work in June was more involved so I'm trying to get ahold of those records.

Thanks again for everyone's input!   :smiley

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Offline Emby

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Re: Hello - new here :)
« Reply #8 on: October 29, 2009, 10:37:05 PM »
Hi JenFar,

I was told by my GP that anything between 0.3-5.0 is considered normal....mine came back 5.3..waiting to have more blood tests done  :( 

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Offline Andy Battaglia

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Re: Hello - new here :)
« Reply #9 on: October 29, 2009, 11:05:44 PM »
It's when TSH gets in the 6 or higher range where it shows low thyroid function. The higher the thyroid stimulating hormone, the more it shows the thyroid is not functioning properly, so more TSH is produced in an attempt to stimulate the thyroid.
Andy

All we are saying is give thals a chance.

 

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