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Author Topic: Study Finds Thal Minors do Have Symptoms  (Read 229156 times)
Prets
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« Reply #90 on: October 03, 2012, 07:27:34 AM »

Doctors believe thal minor is asymptomatic. But a lot of us get tested/diagnosed only after we have long term symptoms. The medical books need to be updated before doctors will follow it.

Even if thal minor is supposed to be symptomatic, Anemia itself is full of symptoms based on common sense. Less hemoglobin, low oxygen, faster fatigue, etc.

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Symptomatic Beta Thal Minor.
Slade
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« Reply #91 on: November 20, 2012, 03:13:25 AM »

I wonder if anyone with thal minor has ever measured their oxygen saturation? I'd like to know how it correlates to our day to day symptoms like fatigue, memory problems, exercise intolerance, etc.
There are portable devices called pulse oximeters that can measure the O2 saturation by simply clamping on the forefinger. Some inexpensive models are sold over ebay and some of them are capable of logging the data (i.e. overnight).  I wonder if such device would be of any use in evaluating our condition.
I saw some videos with Everest climbers using such oximeters to monitor their O2 levels while ascending to the summit. With increasing altitude their saturation dropped significantly and they felt extremely fatigued. At some point they used portable hyperbaric chambers to fight high altitude sickness. I wonder if similar "treatment" could temporarily improve our symptoms.
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Hb Lepore variant
kalp3
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« Reply #92 on: December 07, 2012, 01:36:06 PM »

Hi andy my name is kalpak i am from india and i am 23 years old...
Idont know anything about exjade  is it a supplement?  I take folic acid on regular basis do i need to take exjade  my hb is 10.9 and i dnt feel any  difficulty in my daily routine but my digestive system is poor...  i lost too much weight since i sufferd from food poisoning 2 years ago tell me how shuld i gain weight  a have beta thal minor... waiting for ur reply andy... take care...
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Andy Battaglia
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« Reply #93 on: December 07, 2012, 03:20:26 PM »

No, Exjade is an iron chelation medicine that is used to remove excess iron.  Minors do not need it. You need to concentrate on good nutrition through diet with some added supplements, like folic acid. Bananas are a good food for weight gain. Look for foods that are nutritious.
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Andy

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Pratik
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« Reply #94 on: December 07, 2012, 11:44:56 PM »

No, Exjade is an iron chelation medicine that is used to remove excess iron.  Minors do not need it. You need to concentrate on good nutrition through diet with some added supplements, like folic acid. Bananas are a good food for weight gain. Look for foods that are nutritious.
I agree with bananas haha and that too with milk (bananas soaked in milk should be taken to gain weight) because my brother used to eat it and he gained nice sum of weight lol.

-P.
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kalp3
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« Reply #95 on: December 08, 2012, 03:35:28 AM »

Thanks andy!
I also have a question about gallstones i found to have gallstones a year ago when i suffered from serious stomach pain i felt like hell 3 continuous days during that pain. Doctors told me remove gall bladder  so that the stones never form again the size of  the biggest stone measure 1.3 cm in diameter. I want ur opinion on it. do i remove my bladder? Or is there any way to dissolve those stone? Cause i dont want to feel that pain again.
And if i need to remove the bladder is that surgery is major and hav some risk? Is there any diadvantages of removing gall bladder? One thing i forgot to tell you my billorobin is always high my skin looks yellow and eyes horribly yellow... total billorobin count is 16.43 and never really went below 13. And conjugated bilorobin is 1.43. What should i do? Thanks for the previous reply waiting for ur reply on this one... take care
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kalp3
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« Reply #96 on: December 09, 2012, 11:17:04 AM »

Plz andy i request u to suggest me about above question... i hav gave u all info about my thal and gallsrones plz sugfest me what should i do? Waiting for ur reply... take care
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Andy Battaglia
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« Reply #97 on: December 09, 2012, 05:45:11 PM »

Hi Kalpak,

It is unusual for a thal minor to have such severe gallbladder symptoms. It indicates that you have a high turnover of red blood cells. I always think surgery should be a last report but you have to be careful with the gallbladder because of the risk of rupture. But before suggesting removal, I have some questions.
1) Have you had any ongoing exposure to chemical fumes? This includes things like moth balls, gasoline fumes and synthetic perfumes and colognes.
2) Have you taken any medicines like antibiotics or painkillers like ibuprofen over a period of time?
3) Do you eat any type of broad bean?
4) Do you follow a good diet? Do you consume much red meat?
5) Do you get much sun? Has your vitamin D level been tested?

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Andy

All we are saying is give thals a chance.
kalp3
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« Reply #98 on: December 10, 2012, 01:06:19 AM »

Hi Andy!
No i am not having any ongoing exposure to chemical fumes... secondly i have taken painkillers during that severe pain i mentioned but i dont know exactly if i had consumed the one you are mentioning.... i dont eat any kind of broad bean will u plz tell me which broad bean should i consume? You earlier mentioned that i need to take supplements along with folic acid pills will u plz tell me the names of those supplements? And i dont consume red meat as it is unavailable here... i dont know if my diet is good or not as nobody ever tell me what diet should i follow. here in my place i dont find much knowledgeble people who can suggest me about thal will u plz tell me what diet i should follow? I think i get enough sun but i havnt yet check my vitamin d levels...
U have mentioned about the risk of rupture what care i should take to avoid them and what do u mean by high turnover of red blood cells?
Is there any risk after removing gall bladder as a doctor once told me that after removing bladder If i will suffer from malaria then there is a risk is that true?
Thank you very,very much andy for All those suggestions you are really a god to all like me... waiting for your reply take care...
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Andy Battaglia
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« Reply #99 on: December 10, 2012, 09:29:07 PM »

Actually, you should not eat broad beans as they can cause destruction of RBCs, just as certain chemicals and drugs can. It is the premature destruction of RBCs, hemolysis, that causes the excess bilirubin that causes skin and eyes to yellow and gallstones to form. We often hear from thal minors who have some yellowing and some gallbladder issues, but yours are worse than normal for a minor. However, some minors do get an enlarged spleen and gallstones from the high rate of hemolysis. If your doctor wants to remove your gallbladder for your safety, then it should be done. The surgery is very common and is usually done using 4 small holes, rather than a cut. Talk to your doctor. If the doctor thinks you could be in danger from the gallbladder, you should have it removed. It will not increase your chances of catching malaria. If it isn't urgent to remove the gallbladder, vitamin C and natural vitamin E can help to prevent gallstones. Eat a diet high in fiber with plenty of fruits and vegetables. A traditional Indian diet is very good because it contains many vegetables and herbs and spices with medicinal properties. You don't get much red met and that is good as fatty meats can also lead to gallstones.
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Andy

All we are saying is give thals a chance.
kalp3
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« Reply #100 on: December 11, 2012, 05:18:02 AM »

Thanks Andy! as you mentioned i also have enlarged spleen and during fever it almost occupies Half of my stomach.
The doctor told to me to wait till i complete my graduation and then to perform the surgery to remove gallbladder. Is there any complications that can occur after i remove my gallbladder? And what about spleen enlargement? Is there any way to keep it normal? Andy i have another important question will my skin and eyes look normal after removal of bladder? I have never saw them normal before? Waiting for your reply andy... your reply means a lot to me take care...
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Andy Battaglia
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« Reply #101 on: December 11, 2012, 11:10:58 PM »

Kalpak,

Have your skin tone and eyes been yellowish and your spleen been enlarged all your life?  Thal minors often have enlarged spleens, but usually not severely. Yours sounds like it gets quite large. I want to make sure you understand why it happens. Thal minors produce a mixture of normal red blood cells and defective RBCs because one of the beta globin genes has some defect and doesn't work to help produce normal hemoglobin. The RBCs produced because of this tend to be small, pale and misshaped. These defective RBCs are filtered out by the spleen and don't live as long as normal RBCs. The spleen enlarges because it is filtering out RBCs at a faster than normal rate. When the rate of this hemolysis is high, as appears to be the case with you, the spleen enlarges even more. A by-product of hemolysis is increased bilirubin, leading to gallstones. The size of your spleen and the amount and size of your gallstones both indicate that you have a high rate of hemolysis. This might be related to the specific beta mutation you carry.

Your doctor is the best judge of whether your gallbladder poses a risk to your health. The gallbladder helps in digestion of fats, so if it is removed, a low fat and high fiber diet is necessary. To try to slow down the rate of hemolysis, I would suggest the following daily:
400 IU natural vitamin E.
2000 mcg (2 mg) Folic acid.
1000 mg vitamin C.
Get the vitamin D blood test as soon as you can.


There is a good article on the gallbladder at http://excelonhealth.com/ExConditions_Gallbladder.html
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Andy

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kalp3
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« Reply #102 on: December 12, 2012, 02:03:51 AM »

Andy!
No my skin tone and eyes are not yellowish since i born when i was 9mnths old i suffered with jaundice until then i wasnt detected with thal either during that treatment i was detected with thal minor i dont have any member in my family with thal but my grandparent had trait of thal so it came to me... so from that time my eyes look yellowish... thank you andy for all your suggestions and for those supplements you suggested and i will do the vitamin d test as soon as possible... by d way Andy what do u think about my health condition now? As i told you about my reports i mean i am 23 now do you think there the spleen condition that you mentioned as unusual may cause some problem in future? Or is there any kind of danger due to the current condition?
Andy one last question what about when i'll get married if my partner is not thal our child will be healthy? Doctors say that if i'll have boy child he will also have thal minor and if i will have gurl child she will be healthy... is it like that? You havnt told me about if my eyes look normal after i remove gall bladder or not? Thank you very much andy for all your replies.... take care
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kalp3
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« Reply #103 on: December 13, 2012, 01:29:43 AM »

Hi Andy,
I take 5mg folic acid supplements is that ok? As you recommended to take 2mg?
Waiting for your reply andy... take care
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Andy Battaglia
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« Reply #104 on: December 13, 2012, 09:15:46 AM »

5 is good. I use 2 for the minimum but 5 is a better dose.
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Andy

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