New member from Tucson, Arizona

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Offline Melsgal

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Re: New member from Tucson, Arizona
« Reply #15 on: September 11, 2010, 03:02:07 AM »
Andy,

THANK YOU!  I didn't think I was iron deficient.  I agree with you about not trying to tell the doctors anything about Thalassemia...it obviously gets you nowhere but into the nearest mental facility.

I have been on B-12 shots for 2 years now as well as folic acid, with a good daily vitamin.  I am a real stickler about fruits and veggies as well.  I have found that deep breathing does help tremendously when I am feeling light headed and dizzy...a fan or cool air in my face tends to help a lot as well.  I haven't found anything that helps with the motion sickness, blurred vision and inability to drive though.  I am going to continue to watch these posts and get all the information and tips I can about diet and supplements...maybe something will help.

I actually asked for and recieved all the blood tests done since I ended up in the hospital 5 years ago and one thing I have noticed is that BUN has been low most of the time and bilirubin has been high.  Any idea what those numbers are?

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Offline Andy Battaglia

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Re: New member from Tucson, Arizona
« Reply #16 on: September 11, 2010, 06:33:20 PM »
A higher than normal bilirubin level is also common in thalassemia and is due to the higher than normal turnover of red blood cells (hemolysis). The bilirubin is a by-product of hemolysis and over time can lead to gallstones. The low BUN (blood urea nitrogen) can be caused by several things, including hemolysis.

So, you have a high end of normal retic count, which shows that your bone marrow is working extra to replace the red blood cells lost to hemolysis, which in turn leads to higher bilirubin levels. Your efforts need to be directed towards slowing the hemolysis by adding the previously mentioned nutrients and paying specific attention to dietary and supplementary antioxidants. Magnesium can play a key role in extending the life of RBC's, as do vitamins C and E. B complex can help produce more RBC's.

The more I have learned about thal minor, the more I have become convinced that there is little that can be done medically, even if doctors acknowledged that thal minor is at fault. However, each minor can do things to help improve the health and optimizing the blood system has to be a main goal.
Andy

All we are saying is give thals a chance.

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Offline Prets

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Re: New member from Tucson, Arizona
« Reply #17 on: September 24, 2010, 10:55:32 AM »
I want to share something here..

Recently I went to a hospital doctor for Iv antibiotics because I had a bad infection and I couldn't take pills. Under normal circumstances, I would think it wise to tell doctors that I am a very symptomatic thal minor, who is allergic to a lot of medications.

The reply I got was - "Someone has PUT this (wrong) thought in your head that thal minor is the cause of any of your problems."

I have learnt one thing with numerous such experiences, that in my case, its wiser I dont mention my thal minor status at all. Then I get treated properly, and no one looks at me like i'm crazy.  :-)  Even if i do have side effects, they are quite prompt in treating that too.  I suppose these are ego issues, not all doctors take kindly to being told that theyre unaware of something, or that their patients know better.

The other thing is - if a doctor cannot help you at all, its time to find a new one. I have done it several times, till i finally found a few doctors who really do help me a lot.

Its best to be aware ourselves, and do what helps us.

Yes, deep breathing helps a lot, even 5 deep breaths with eyes closed, many times a day - it reduces the anxiety, etc.  Takes a few days of conscious practice, then habit sets in.

About thal minor and iron deficiency, what people dont realise is that it is possible to be iron deficient, and need iron, but getting that iron to actually absorb is the tough part. I have faced it for a good 20 years with no results.

Lastly - patience and persistence helps. Keep trying and eventually you find what works best for you.  :-)

(I was all charged to up to write this, i hope i've not posted in the wrong place!)

:-)
Symptomatic Beta Thal Minor.

 

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