Hello

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Offline Yodagramma

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Hello
« on: September 28, 2009, 04:02:41 AM »
I am 53 years old and was just informed by my doctor that I have Alpha Thallasemia Minor Trait.  I don't understand much.  He says there are no symptoms.  However all my life I have had low energy, fatigue, low stamina, weak muscles, brittle nails, easy bruising, shortness of breath, limited energy that once I use up, is gone till next day and lack of tolerance for high altitudes.  As child and teenager, I could never keep up with the other kids and when told to do certain tasks in physical ed, could never do them.  For example if told to do 10 sit-ups I would be lucky to do 2. 

For as long as I can remember my lab results have shown MCV and MCH levels as low.  Usually but not always my RBC is high, MCHC is low or borderline and % iron saturation is low. Ferritin when it shows on results is usually high or borderline high. When I have a lab result that shows RDW it is usually high.  Some results say slight hypochromia and slight microcytosis.  I remember one doctor telling me that the lab results showed my red blood cells were deformed.  I do not know what most of these are or what any of it means.  The usual diagnosis is iron deficiency, or chronic anemia, followed by a funny look at the labwork and then comments like well actually, umm maybe not and well we'll just treat with iron anyway.  So for the last 25 years I have taken iron which doesn't effect the results.  The latest doctor did some kind of special test for the hemoglobin and when it came back said I had Alpha Thal Minor.  I don't know maybe it is all in my head.  Sometimes it is just so darn depressing. 

Sorry if I am rambling, but when I came across your site in searching about anemia, I thought, wow some of those people are describing my life!  Then the doctor tells me I carry that trait.  I guess my question to you is: Can an Alpha Thal Minor have symptoms?

Thank you and God Bless

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Offline Andy Battaglia

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Re: Hello
« Reply #1 on: September 28, 2009, 04:37:34 AM »
Hi Yodagramma,

To learn more about alpha thalassemia, see our thread at http://www.thalassemiapatientsandfriends.com/index.php?topic=1772.msg14793#msg14793

As you have seen, iron doesn't do much if anything. That is because the alpha thal trait does cause a deformity in some red blood cells, reducing the amount of good red blood cells, resulting in an anemia that is caused by gene deletions, rather than lack of iron. The main thing you can do for yourself is take 2-5 mg folic acid daily. It helps to build red blood cells and is long recognized as having a positive effect. You should also completely avoid fava beans and benzene fumes (found in gasoline fumes and also created by charcoal grilling of meat), as these can cause hemolytic crises that will suddenly lower your red cell count. A nutritious diet and B complex, along with the folic acid, may help your energy level a bit.
Andy

All we are saying is give thals a chance.

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Offline Manal

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Re: Hello
« Reply #2 on: September 28, 2009, 04:48:51 AM »
Hi Yodagramma and welcome to the site

I also advise you to read in this link
http://www.thalassemiapatientsandfriends.com/index.php?topic=118.0

What test did the doctor do to tell you that you have alpha thal minor??? DNA test is the only test that can confirm this.

Andy
 
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and benzene fumes (found in gasoline fumes and also created by charcoal grilling of meat), as these can cause hemolytic crises that will suddenly lower your red cell count.
Does the above apply on beta thal too???

manal

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Offline nice friend

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Re: Hello
« Reply #3 on: September 28, 2009, 01:24:09 PM »
hI Yodagramma ,
 :welcome2 , i hope you're getting the answers for you questions n concerns  :) ..

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

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Offline Andy Battaglia

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Re: Hello
« Reply #4 on: September 28, 2009, 02:44:55 PM »
Manal,

The fava bean/benzene warnings are for alpha thal only.
Andy

All we are saying is give thals a chance.

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Offline Manal

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Re: Hello
« Reply #5 on: September 29, 2009, 01:11:58 AM »
Thanks Andy :wink

manal

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Offline Andy Battaglia

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Re: Hello
« Reply #6 on: September 29, 2009, 01:34:31 AM »
There is a complete list of substances to be avoided in HbH disease (3 gene deletion alpha thal)
at http://www.cdph.ca.gov/programs/nbs/Pages/NBSMedicationProductsAvoidThalassemia.aspx  While this list is for people with HbH, those with alpha thal trait who suffer from anemia should be aware of what may trigger hemolytic crises.


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Medications and Products to Avoid* in Thalassemia

*The medical literature suggests that these medications and products may cause problems for people with hemoglobin H disease; however, no studies have been conducted to prove that these substances are actually harmful for people with hemoglobin H disease.
Sulfa Drugs

Sulfacetamide (eye drops)
Sulfapyridine
Salfasalazine (Salicylazosulfapyridine)
Sulfanilamide 
Dapsone

Analgesics

Aspirin (acetaminophen is safe as alternative)
Phenacetin
Acetanilide

Antimalarials

Primaquine
Chloroquine
Hydroxychloroquine sulfate

Tuberculosis Drugs

Isoniazid
Rifampin


Folic Acid Antagonists

Pyrimethamine


Other Antibacterials

Nalidixic acid (Negram)
Nitrofurantoins
Furazolidone
Chloramphenicol
Beta-amniosalicylic acid
Ciprofloxacin
Doxycycline
   
Other Items

Iron supplements ┬╣
Vitamin K analogues
Quinidine gluconate
Phenazopyridine (pyridium)
Toluidine Blue (a dye)
Methylene Blue (a dye)
Naphthalene (mothballs)


┬╣Unless laboratory-proven iron deficiency.
Andy

All we are saying is give thals a chance.

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Offline Yodagramma

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Re: Hello
« Reply #7 on: September 29, 2009, 11:29:34 PM »
Thank you so much for your replies. I am not sure of the test done except it was some kind of hemoglobin test.  I am hoping to get copies of lab work tomorrow.  I had read the nutrition post and ordered all the recommended supplements except for wheat grass, it was way too expensive for my budget.  Got the order today in the mail so am taking the recommended levels of each.  Hope it all helps, get so darned tired of feeling tired!

Hugs and God Bless

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Offline Manal

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Re: Hello
« Reply #8 on: September 30, 2009, 03:30:04 AM »
Thanks Andy for this important note

Yodagramma
 please update us and best of luck


manal


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Offline Yodagramma

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Update
« Reply #9 on: October 03, 2009, 02:35:47 PM »
The test the Doctor did was called Capillary Electrophoresis.  Results were:

NOTI  HGB  A          97.2%     (94.5 - 98.2)
         HGB   F         <0.5         (0.0 - 2.0)
         HGB   A2         2.8         (1.8 - 3.5)
PATH ELECTRO        See Result Comment

Result Comment:
No abnormal Hgb variants identified by CZE.
Note: A normal study by CZE does not exclude thalassemia.  Alpha thalassemia is not detected by CZE and may require additional testing for evaluation of unexplained microcytosis if clinically indicated.  Detection of beta-thalassemia may be masked by concomitant iron deficiency, and the study may need to be repeated if microcytosis persists after iron repletion.




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Offline Andy Battaglia

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Re: Hello
« Reply #10 on: October 05, 2009, 12:33:13 AM »
Hi Yodagramma,

These results would rule out beta thal minor, but nothing in this test itself would indicate alpha thal minor, but that is not unusual, as the results themselves, explain. The diagnosis of alpha thal carrier and minor are difficult without having a DNA analysis done. They do not normally show up in the electrophoresis test, but can be suspected by a combination of things. This would include the other tests, MCV, MCHC, MCH, RDW, etc along with the ongoing low hemoglobin level, which has never responded to iron. If your genetic background includes any Asian, Mediterranean, or African, this would also suggest the possibility of alpha thalassemia minor. I would agree that since your anemia has never responded to iron and since beta thal is ruled out, that it is quite possible that you do have alpha minor, as long as other sources of anemia like B-12 deficiency and folic acid deficiency have also been ruled out. If alpha remains the only possibility, then folic acid supplements are the main course of treatment.
Andy

All we are saying is give thals a chance.

Re: Hello
« Reply #11 on: March 14, 2024, 09:30:47 PM »
Andy, why methylene blue and vitamin K would be problematic to thal minor?

 

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