Been Lookin for Ya's!!!

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Offline LWSpevack

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Been Lookin for Ya's!!!
« on: December 18, 2006, 03:06:29 AM »
Greetings from the Lone Star State…

New to the site but must admit that I have learned more in my two hours of reading the posts here than I had found in the previous several years of toil in this regard.  My only regret is that it took me so long to find you guys.

Like most I have read of, my greatest frustration deals with the attempt to find a GP who has even the slightest hint of how to take the Thalessemia factor into account in determining an overall treatment package.  In addition to thal, I also deal with Diabetes, High Blood Pressure, Cholesterol and very high triglycerides levels.

Until reading here, I was unaware that there were so many types of Thal.  I knew of minor and major and that was the limit.  Knowledge of that information includes what I feel is the knowledge base of the doctors that I have been to so far.

If anyone can tell me specifically what test to request in regard to determining the exact Thal that I have … or better yet, if anyone would happen to know of a doctor in the Houston area that even knows how to spell the disease, I would love to here about it.

My questions would be in regard to the standard prescription drugs used to treat problems in normal patients vs. thal patients.  My triglycerides levels have been know to exceed the measurable limit.  In response, my doctors have prescribed massive doses of the normal drugs used to control this problem.  These dosages do much to take away any level of energy that was left after the thal was done with me.  I have always felt that thal is the wild card that makes the treatment for the other issues “unique” as the standard treatments never seem to work for my body.

No doctor I have ever seen so much as mentioned that Folic Acid would be beneficial.  In fact, no doctor I have ever seen has ever made a recommendation in regard to the fact that I do have Thalessemia.  As I have read here, the doctors do not feel that thal minor comes into consideration for anything.

With that I will sit back and shut up and listen.  Again, I’m very happy to be here and look forward to learning much from the paths that so many have walked before me.

Lloyd
If you don't live for something ... you'll die for nothing.

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Offline §ãJ¡Ð ساجد

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Re: Been Lookin for Ya's!!!
« Reply #1 on: December 18, 2006, 06:56:26 AM »
Howdy Partner! (Always wanted to say that :biggrin)

Welcome to the family!

Sorry, but I can try to answer only a couple of questions! I hope that the remaining ones will be answered by someone with more superior knowledge than mine.

If you've never been transfused then you can rule out Thal. Major safely. To determine the exact type of Thal. mutation, you will need to have your DNA tested for it. On the other hand some good doctors can also "guess" whether you have Intermedia or Minor by looking at the results of tests such as your blood picture and Haemoglobin Electrophoresis. You can also post the results here so that experienced members like Mr. Andy can give you a better opinion than most doctors you encounter everyday!

As far as the difference between the drugs prescribed to other patients and us Thals is concerned, then the only thing that we have to keep an eye on is that they don't contain high amount of Iron added in them; this rule goes for the diet too unless you are suffering from Iron deficiency which some Thal. minor can.
Apart from that there is nothing else that make much difference.

Take care, Peace!
اَسّلامُ علیکم Peace be Upon you
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Kathy11

Re: Been Lookin for Ya's!!!
« Reply #2 on: December 18, 2006, 11:27:09 AM »
Welcome Lswspevack.
 :wavey :wavey :wavey.
Hang around ,we are too happy to read from you.I dont know much ,but I know that you have come to the right place ,to learn about thal.
I wish you the best experience, in our company.
Kathy

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Offline jzd24

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Re: Been Lookin for Ya's!!!
« Reply #3 on: December 19, 2006, 12:49:03 AM »
Hi Lloyd,
    Welcome to the site! You will learn a lot here, and get great support. Keep asking questions, eventually someone will answer them. I agree that getting a genetic test will tell you exactly what you have. You may want to go to a thal center of excellence, if you have the time and resources. Good luck, Jean

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Offline Narendra

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Re: Been Lookin for Ya's!!!
« Reply #4 on: December 19, 2006, 03:08:37 PM »
Hello Lloyd,

Welcome to the site.

There are lot of wild cards that goes on when it comes to blood work and thal could definately be one. There are quite a few Thal(Minor)'s who complain about lack of energy as they grow older.

Folic Acid is recommended for all Thals.

For finding out exactly what type of Thal you have, DNA would be the best option. But, if you have Hemoglobin Electorophoresis done, that might give the doctors some idea. Beta Thal(Minor) can mostly be diagonised by Electrophoresis. Alpha Thal(Minor) is difficult to detect. Thal(Intermedia) is much more complex and obviously you are NOT a Thal(Major) as Thal(Major)s are mostly diagonised in 1st 2 years of life.

Ask more questions and keep us updated.
-Narendra




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Offline Andy Battaglia

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Re: Been Lookin for Ya's!!!
« Reply #5 on: December 19, 2006, 05:35:14 PM »
Hi Lloyd and welcome to our group,

Sorry I'm a little slow responding, but with the holiday season I am quite busy with work and haven't had much time.

The first thing I'd like to know is what your hemoglobin or hematocrit levels are. This will give the first clue as to how much thal is affecting you overall. Thal can aggravate all the conditions you mentioned, and could be a factor to be considered. if the doctors haven't given you this information, please call and ask. At the least, your hematocrit should be in your file from previous blood tests.

As far as testing, the most common types of testing are listed in an article at

http://www.labtestsonline.org/understanding/conditions/thalassemia-3.html

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CBC (complete blood count). The CBC is a snapshot of the cells and fluid in your bloodstream. Among other things, the CBC will tell the doctor how many red blood cells are present, how much hemoglobin is in them, and give the doctor an evaluation of the size and shape of the red blood cells present. MCV (mean corpuscular volume) is a measurement of the size of the red blood cells. A low MCV is often the first indication of thalassemia. If the MCV is low and iron-deficiency has been ruled out, the person may be a thalassemia trait carrier.

Blood smear (also called peripheral smear and manual differential). In this test a trained laboratorian looks at a thin stained layer of blood, on a slide, under a microscope. The number and type of white blood cells, red blood cells, and platelets can be manually counted and be evaluated to see if they are normal and mature. A variety of disorders affect normal blood cell production. With thalassemia, the red blood cells are often microcytic (small). They may also be:

    * Hypochromic (pale – have less than the normal amount of reddish coloring – indicating less hemoglobin)
    * Vary in size (anisocytosis) and shape (poikilocytosis)
    * Be nucleated (not normal in a mature RBC)
    * Have uneven hemoglobin distribution (producing “target cells” that look like a bull’s-eye under the microscope.

The greater the percentage of abnormal looking red blood cells the greater the likelihood of an underlying disorder, and impaired oxygen carrying capability.

Iron studies. These may include: Iron, Ferritin, UIBC, TIBC, and Percent Saturation of Transferrin. These tests measure different aspects of the body’s iron storage and usage. They are ordered to help determine whether an iron deficiency is causing and/or exacerbating a patient’s anemia. One or more of them may also be ordered to help monitor the degree of iron overload in a patient with thalassemia.

Hemoglobinopathy (Hgb) evaluation. This test measures the type and relative amounts of hemoglobins present in the red blood cells. Hemoglobin A, composed of both alpha and beta globin, is the normal type of hemoglobin found in adults. A greater percentage of Hgb A2 and/or F is usually seen in beta thalassemia trait. Hb H may be seen in alpha thalassemia due to HbH disease.

DNA analysis. This test is used to investigate deletions and mutations in the alpha and beta globin producing genes. Family studies can be done to evaluate carrier status and the types of mutations present in other family members. DNA testing is not routinely done but can be used to help diagnose thalassemia, and to determine carrier status.

I would also suggest you look at our thread on supplements at

http://www.thalassemiapatientsandfriends.com/index.php?topic=118.0

There are many supplements that thals need beyond what are considered the requirements of a normal person. Folic acid and vitamin E are essentials.

I would also suggest you read through the threads in the minor section of this site, including the posts at  http://www.thalassemiapatientsandfriends.com/index.php?topic=562.0


Please contact Eva Chin at the Cooley's Anemia Foundation and ask where you can find thal-familiar doctors in the Houston area. Her contact info is  eva.chin@cooleysanemia.org and/or phone 800-522-7222

Good luck and keep us posted on your progress in determining your condition.
Andy

All we are saying is give thals a chance.

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Offline Danielle

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Re: Been Lookin for Ya's!!!
« Reply #6 on: January 08, 2007, 02:59:45 PM »
New to the site but must admit that I have learned more in my two hours of reading the posts here than I had found in the previous several years of toil in this regard.  My only regret is that it took me so long to find you guys.
Hi, Lloyd!  Welcome to the site!  We are very happy to have you here with us.   :hithere

I'm glad that you have been able to find useful information here.  That is definitely one of our major goals for all the members here.

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or better yet, if anyone would happen to know of a doctor in the Houston area that even knows how to spell the disease

The above statement made me chuckle.  It's so true.  I wish there were more doctors that specialize in Thalassemia.  This disorder is becoming more popular than ever, and there are still minimal doctors taking care of it.  It saddens me.   :(

You will definitely get the majority of your questions answered here, and I see that you have been given some good information already.  I hope that you are able to find the right doctor to properly diagnose and treat you.  Best of luck to you, and we are always here when you need us.   :biggrin

 

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