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Author Topic: Study Finds Thal Minors do Have Symptoms  (Read 229158 times)
HusbandOfThalBetaMinor
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« Reply #135 on: September 26, 2014, 04:16:01 AM »

Just adding my voice that Thal Minors do have symptoms that actually impact daily life. Some it seems to impact lot severely than others but saying that they have no symptoms is load of rubbish from the medical profession.
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Peter
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« Reply #136 on: December 15, 2014, 06:15:47 AM »

Absolutely agree - I too am medically qualified ( ENT Surgeon ).  Hb around hovers 11, and exercise tolerance limited as a rsult - not major but most definitely not able to keep up with others of my age in a race.


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Brickfielder
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« Reply #137 on: December 19, 2014, 08:32:04 AM »

Generally speaking I would agree with the previous comment. However it is so difficult to have an objective assessment of the performance impact of Thal minor on prolonged physical activities / endurance sports. A large cohort would be needed to really take into account the normal variability wihin the population.
I have Thal minor, my HB hovers around 11, MCV is particularly low (56 I think). I joined a running club a few months ago and I find myself running with with some of the fast guys in the group (not the fastest!). Interestingly though I perform much better on shorter distances on track (up to 1k/1mile), even though I train specifically for mid distances on road (10 miles). I find it bizarre because the same people who run much faster than me during long runs cannot keep up with me on shorter runs. I think for me the 'sweet spot' is around 3k. I do wonder if thal plays a role, because no one else of my running mates experiences this.
« Last Edit: December 23, 2014, 03:35:28 AM by Brickfielder » Logged
plainmary123
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« Reply #138 on: March 17, 2015, 01:36:38 PM »

I thank you for this site and letting me join.I am 43 and for as long as I can remember has been told that I had sickle cell trait,but last year I start seeing a hematology doctor who has not said much about Thalassemia just that she thinks I have it .She had me to take iron pills for 30 days and then she said I was not deficient in iron so stop. I was told since I didn't have symptoms she suspect it is alpha minor but my medical records just says unspecified anemia.My RBC-blood is 5.53 and my red cell distribution width is 16.2% ,is there other numbers I need to look at to see what is wrong? I was admitted Sunday into the hospital because I was having shortness of breath which started a few weeks back but the fatigue has been there a while now.They checked for blood clots and any heart issues but found nothing I did mention to them that I was told I had thalassemia so they said to see a hematologist .Go figure ,she does not put thalassemia in my records ,just in her notes ,of possible alpha minor is what the nurse said when I called.I am in need of understanding can someone help me make since of how to know if I have this and is it trait,minor ,major ,alpha,beta,how can I read my lab to get the picture?

 Huh? I am really lost and cunfused
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Andy Battaglia
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« Reply #139 on: March 18, 2015, 07:42:24 PM »

Hi plainmary123,

It would help to see the test results for hemoglobin or hematocrit, and values for MCV and MCH. If alpha thalassemia is involved, it may take a DNA analysis to confirm. A hemoglobin electrophoresis test would be able to detect beta thal minor. If you haven't had an electrophoresis test, it should be done. Your RBC is a bit high, which is common in thal minor but not in iron deficiency. Iron won't help, but folic acid in the form of L-methylfolate is advise to help build red blood cells. Your Hb level will tell me more if you can provide it.
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plainmary123
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« Reply #140 on: March 21, 2015, 01:00:10 PM »

I have this ,I hope you can tell me Andy what this means...I thank you so much for helping me and others with this site and all the information.


Component Name   Result   Normal Range      
Glucose - Blood (Random)   107 mg/dL   65.0 - 99.0   H   
Urea Nitrogen - Serum (BUN)   13 mg/dL   6.0 - 24.0   N   
Creatinine - Serum   0.77 mg/dL   0.57 - 1.0   N   
Creatinine Clearance (Est)   151.9200 mL/min   88.0 - 128.0   H   
BUN/Creatinine Ratio   17   9.0 - 23.0   N   
Sodium - Blood   142 mmol/L   134.0 - 144.0   N   
Potassium - Blood   4.2 mmol/L   3.3 - 5.1   N   
Chloride - Blood   104 mmol/L   97.0 - 108.0   N   
Carbon Dioxide (Total) - Serum   28 mmol/L   18.0 - 29.0   N   
Calcium - Serum   9.8 mg/dL   8.7 - 10.2   N   
Protein (Total) - Serum   7.2 g/dL   6.0 - 8.5   N   
Albumin - Serum   4.3 g/dL   3.5 - 5.5   N   
Globulin   2.9 g/dL   1.5 - 4.5   N   
A/G Ratio   1.5   1.1 - 2.5   N   
Bilirubin, Total   0.2 mg/dL   0.0 - 1.2   N   
Alkaline Phosphatase   111 IU/L   39.0 - 117.0   N   
AST (SGOT)   24 IU/L   0.0 - 40.0   N   
ALT (SGPT)   41 IU/L   0.0 - 32.0   H   
GFR Non-African-American   95 mL/min/1.73   59.0 -   N   
GFR African-American   109 mL/min/1.73   59.0 -   N   
Ferritin   108 ng/mL   15.0 - 150.0   N   
Iron - Saturation   14 %   15.0 - 55.0   L   
Iron Binding Capacity (TIBC)   384 ug/dL   250.0 - 450.0   N   
UIBC   330 ug/dL   150.0 - 375.0   N   
Transferrin, Soluable Receptor   25.9 nmol/L   12.2 - 27.3   N   
Iron - Serum   55 ug/dL   40.0 - 155.0   N   
Transferrin   346 mg/dL   200.0 - 370.0   N   
Transferrin Saturation   11 % Saturation   -   L   
Hematology - 01/14/2015

 
Component Name   Result   Normal Range      
WBC - Blood   6.3 x10E3/uL   3.4 - 10.8   N   
RBC Count - Blood   5.53 x10E6/uL   3.77 - 5.28   H   
Hgb - Blood   12.1 g/dL   11.1 - 15.9   N   
Hematrocrit   38.7 %   34.0 - 46.6   N   
MCV   70 fL   79.0 - 97.0   L   
MCH   21.9 pg   26.6 - 33.0   L   
MCHC   31.3 g/dL   31.5 - 35.7   L   
Red Cell Distribution Width   16.2 %   12.3 - 15.4   H   
Platelet Count   364 x10E3/uL   150.0 - 379.0   N   
Neutrophil %   45 %   -   N   
Lymphocyte %   45 %   -   N   
Monocyte %   7 %   -   N   
Eosinophil %   2 %   -   N   
Basophil %   1 %   -   N   
Granulocytes / Bands - Blood   3.0 x10E3/uL   1.4 - 7.0   N   
Lymphocytes - Blood   2.8 x10E3/uL   0.7 - 3.1   N   
Monocytes - Blood   0.4 x10E3/uL   0.1 - 0.9   N   
Eosinophils - Blood   0.1 x10E3/uL   0.0 - 0.4   N   
Basophils - Blood   0.0 x10E3/uL   0.0 - 0.2   N   
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Nouna
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« Reply #141 on: March 22, 2015, 11:17:56 AM »

Hello,
2 years ago, dr. Said that i have thalassemia minor with symptoms, i was suffering from bones & articulations pain
The pain was very strong , i did rhumathoide analyses .. etc also rmi on by back .. all was good, so pain was refered to thalassemia .. few monthes later, i got a very bad circulation pulse & tension very low. My dr. Asked me to visit a cardio, in the eco i have mitral regurge but it's normal.
My dr. Said because of thalassemia plus my alergy from weather & pollution i have a lake of oxygen that's why bad circulation & pain
Pain become stronger specially back pain, i went to another hemologue, he said it's not thalassemia minor but it's a normal anemia, stoped folic acid & took iron
Didn't feel good at all, pulse 50 to 55 ... tension 90 / 47, can't see good .. etc
I repeated the test, hb f 0 & A2 3.9, got an angina & took a sublingual nitrate
actually i stopped iron & returned back to folic acid plus vitamin B 12 ... a litlle bit better .. my tension now is 100 /70 & my pulse within normal ... but don't understand do i have thalassemia minor or not .. in the first analyse A2 was 3.5 & the  hb F was present in the diagram .. my dr. Said that i'm thalassemia minor with major symptoms .. i'm lost & visited too mich drs. & All the time fatigue 2 years ago
Can anyone help me please
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Andy Battaglia
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« Reply #142 on: March 22, 2015, 07:32:44 PM »

plainmary123,

The iron values don't indicate deficiency. The MCV, MCH and Hb all are within range for alpha thal trait. A hemoglobin electrophoresis test would shed more light, as the HbA2 percentage would be lower in alpha thal trait than in beta thal minor. Even with those results, it probably wouldn't be 100% conclusive that it's alpha thal, but it would be very likely.

There are not a lot of suggested treatments for alpha thal. Folate is needed to build red blood cells and with the lower Hb level and the higher RBC level, it shows that the overproduction of red blood cells typical in thal minors is present, which means there is a higher than normal need for components of red blood cells. I suggest 2000 mcg (2 mg) L-methylfolate daily. A B complex supplement and magnesium should also be considered.

If it is alpha thal and it is likely, avoidance of certain substances is recommended, as to avoid incidents of favism, where the Hb level suddenly drops on exposure to fava beans, other broad beans and various drugs and chemical fumes. Try to avoid chemical scents that are used in many household products, like detergents and perfumes. If you notice sudden bouts of tiredness, examine what you may have been exposed to. I have heard from several people recently who had bouts of anemia after exposure to cigarette smoke. For a list of some things to avoid, see http://www.thalassemiapatientsandfriends.com/index.php/topic,3410.msg34830.html#msg34830

And get your vitamin D level tested. Anything less than 35 isn't acceptable and a level of at least 50 should be the goal. Correcting deficiency does help with tiredness and fatigue and also improves the immune system.
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Andy

All we are saying is give thals a chance.
Andy Battaglia
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« Reply #143 on: March 22, 2015, 07:35:16 PM »

Nouna,

You need further testing. It does not look like beat thal minor but it may be alpha thal minor. Is it possible to have a DNA analysis for alpha thal?
And what is your hemoglobin level?
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Andy

All we are saying is give thals a chance.
plainmary123
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« Reply #144 on: March 22, 2015, 09:41:04 PM »

I thank you so much Andy you are a God sent,I am going to do all that you suggests so I can get this under control.I hope that the shortness of breath comes to an end as well.I will keep you posted...thanks again.
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ivancro
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« Reply #145 on: March 23, 2015, 06:43:29 AM »

Andy,
is for thal beta minor KAL Folic acid a good way? It is only one available in my country and I'm reading mixed  reviews about health safety of the one I mentioned as pro-cancer and such?...

here is the link of the product I'm using (and it helped me so far battling fatigue and tiredness) http://www.vitacost.com/kal-folic-acid
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Andy Battaglia
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« Reply #146 on: March 23, 2015, 09:12:26 AM »

ivancro,

It's a good product.

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Andy

All we are saying is give thals a chance.
Nouna
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« Reply #147 on: March 23, 2015, 11:08:14 AM »

Andy .. thanks so much that you replied & thanks that you make me feeling not alone
The dr. Though also that i have alfa thalassemia but because he didn't find neither Hb H or S he said no
He though this because my parents never had symptoms like mine
But i have 4 second cousins (boys) that have favism
You are right concerning alergy , i can't support a strong perfume or cigaret's smoke or dust
First time that i got symptoms was after a walking camp for 6 days with lot of moutains, when i climbed moutains for the first time (2 years ago) i discovered that i can't breath & i lost conscience ( than i started analyses i was in france)
I don't know if there is dna test in my country , i'm in Egypt. But will ask
Here some numbers from analyses if can help
Hb 11.2
Haematocrit 36 %
red cell count 5.0 M/cmm
MCV 72
MCH 22.4
RDW 14.8
total leucocytic count 6600 / cmm
Serum iron 95 ug/dL
serum ferritin 26.7 ng/ml
serum total iron binding capacity 333 mg/ dl
Hb A 96.1
Hb A2 3.9
Hb F 0
by the way i was also tested for thyroid hormones & kindey functions & was good



Opps i think i replied concerning another case thinking u were asking me .. sorry
« Last Edit: March 23, 2015, 11:13:15 AM by Nouna » Logged
Nouna
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« Reply #148 on: March 25, 2015, 02:34:16 PM »

Andy,
Did i reply to your question ?? do you have any advise ??
My tension actually 90 /60 & pulse 55
& still have fatigue
thanks
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Andy Battaglia
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« Reply #149 on: March 27, 2015, 01:54:22 PM »

Nouna,

Most adults will not shows any hemoglobin Barts, even when they do carry alpha thal, so electrophoresis is not always useful when alpha is present. If you are a thal carrier, and it is likely, you carry alpha thal. You have low Hb, low MCV and MCH, which all indicate thalassemia. Your iron levels are normal. The electrophoresis shows no HbF and low HbA2, so beta thal is ruled out, leaving alpha thal as the only real possibility. Putting that together with a family history of favism, makes alpha thal very likely. A DNA analysis can confirm this, but is probably not necessary.

Because of your symptoms, I recommend that you take 5 mg L-methyfolate daily. This is most important for alpha thalassemia. I also suggest B Complex, natural vitamin E and magnesium be taken daily. Also, get your vitamin D level tested and report back with the number. Vitamin D deficiency is very common and deficiency causes all sorts of issues, like fatigue, tiredness and a low immune system. It is extremely important that your level is in normal range.

You need to observe and look for any substance that may cause favism. If you notice sudden tiredness with no explanation, review what you have been exposed to. Avoid all broad beans and also avoid chemical fumes and scents as much possible. Avoid cigarette smoke as well.
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Andy

All we are saying is give thals a chance.
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