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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2019





55440 Posts in 5935 Topics by 6269 Members
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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Natalia
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« on: January 04, 2007, 07:51:36 AM »

Hi all,
Glad to find this site, I am not alone :hug.  I am from Jakarta, Indonesia. Been diagnosed with thal B minor abt 9 years ago, my Hb level was 7 wen i was pregnant in 1998, got blood transfusion before delivering baby for abt 1.5 litres. Hb came up to 13 but dropped again to 10 within less than 2 months.  Now, it's ranging between 8-9. Basically I am ok, I only get tired so easily, having headache and feeling cold most of the time. Last time i went to doc, doc said my liver bit enlarged. Cant stand cool weather under 24C. I dont take any medications, nor regular check up.  I dont really know what to do, or what treatment should i get. Any advice i could use?
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mustho
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« Reply #1 on: January 04, 2007, 04:25:55 PM »

Hi Natalia
Welcome to the group, If you are Thalassemia minor, you dont need to be worried, other than you have genetically inherited defect in your hemoglobin , you should be normal. You dont need any particular treatment as such. Just live happily and normally, if you have any illness just take noraml treatment and get advice from your doctors.

There are over 80 millions of thalassemia minors world wide, they are not patients, they simply have genetic defect in their hemoglobin formation. Therefore dont worry you may be among one as well.
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Danielle
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« Reply #2 on: January 04, 2007, 06:00:55 PM »

Welcome to the group, Natalia!  Great to have you here with us!  :hug

Have you talked to a doctor about vitamins?  Thal minors usually don't need any treatment, except for supplements, unless the symptoms are severe.  You do have an unusually low hemoglobin for a Minor, so maybe you were misdiagnosed.  Maybe you should talk to a Thalassemia specialist, or hematologist for some advice.  You can also find some great information in this forum.  We have a wonderful and smart group of people here, and I'm sure you will fit right in!  Don't hesitate to ask questions, or participate in any conversations.   We are all here for you. 
« Last Edit: January 04, 2007, 11:11:33 PM by Danielle » Logged
Danielle
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« Reply #3 on: January 04, 2007, 11:08:15 PM »

C3nZ0, I'm soooooooo sorry.  I went to quote you and I accidentally modified your post instead, so I had to delete it.   



Can you post your reply again? 

« Last Edit: January 04, 2007, 11:19:27 PM by Danielle » Logged
Kathy11
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« Reply #4 on: January 05, 2007, 12:11:52 AM »

Hello Nathalie.
Welcome to the forum I hope you do get the assistance you require to undestand your health issues.

I am one reason why you need to be worried about your health,I started like you everyone telling telling me thals minor is no problem just like in the   medical     manuals ,although i'm riddle  with complaints and health problem derived  from my genetic defect.

You do need to take your health seriously, visit heamatogist, and start to take the necessary minerals to correct your electrolytes and improve your blood level,
Having said that i have to stress that thal minor does deteriorates ones health as the person gets older
,I am the living proof  I live everyday with pains and I get annoy when I constanly hear people saying thal minor does nt cause any problem especially when other people on this web-site has been complaining of their declining health and faced with lots of health problems
.
Unless we walk in" ones"shoes we can never tell not to worry and be flipant about the person

Take care and good luck Nathalie
Kathy
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KHALIFA
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ONE FOR ALL AND ALL FOR ONE


« Reply #5 on: January 05, 2007, 12:38:57 AM »

HI Natalia :wave  welcome to our and your site between your friends .am from state of kuwait and also am B thalass. minor i have one child who he was thalass.major and i made for him BMT in italy in 2005 june he is ok now just small problems after the transplant ...
       any way i said that again and again you are as thalas.minor you don't need any thing to do a bout the blood transfusion JUST listen to me and follow what i said and you will be ok .
        1: in the morning have two class of water when you wake up  :spit2: have good breakfast (chease ege bread corn flex also fresh milk) 3: after 2 to 3: houres have some fruits like appel orange pinabele 4:at lunch time have real good food and be away from the junk food as you can and have lunch what containing a protain like breast of checken with some rice or bread also don't forget the fresh vegetable 5: a bout the dinner am not going to say any thing a bout it you will be at home just open your friedge and see  what do you have   ..
    TELL ME THE RESULT AFTER ONE MONTH

                                      ONE FOR ALL AND ALL FOR ONE[/font]
                                            KHALIFA
                                     STATE OF KUWAIT
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RED_PILOT
Christine Mary
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Mother of Lauryn, who has Thal Major


« Reply #6 on: January 05, 2007, 12:46:42 AM »

Welcome Natalia!!!
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Lauryn's Mom
Natalia
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« Reply #7 on: January 05, 2007, 04:07:29 AM »

Thanks for all of you, so much info i got here. Yes basically i never took it seriously, but Danielle, is it unusual for thal minor like me to have that Hb level? coz my 2 other sis have it too, and their Hb is abt 9 too.  My 7 years old son Hb is 9, but i have never took him to check whether he got it too or not. We got it from father, his Hb is 11.  If there's probability of misdiagnosis what could be the other possibility of diagnosis?  Huh?
To khalifa, thx for the advise, will let you know in a month.  Kathy11, agree with u, guess i need to see haematologist, just to get fitter.

Again, glad to meet u all here...
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Andy Battaglia
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« Reply #8 on: January 05, 2007, 04:17:21 AM »

Hi Natalia and welcome,

A hemoglobin level of only 8 is not normal for a minor. I agree that there may be something besides thal minor that is adding to the problems. There are many different gene mutations that when combined with the beta thal trait, can cause problems that are worse than what a minor would normally have. For example, the combination of one beta thal gene and two alpha thal genes was previously thought to cause no problems but now it has been observed that in some cases, this combination can actually lead to thal intermedia. You should have some tests done to determine the condition of your red blood cells. The different tests for thalassemia are listed in a post at http://www.thalassemiapatientsandfriends.com/index.php?topic=635.msg4830#msg4830

As Khalifa said, a good diet is very important. You should also definitely be taking folic acid daily. It helps build the blood and is always recommended for thal patients.

I would also like to address what Kathy has said in her excellent post. For many years minors have been told that they will have no problems. We have seen countless posts that dispute this and we have also seen where the definition of thal minor is now split into two conditions, thalassemia minima and thalassemia minor. Minors with no symptoms are said to have minima (and also lucky  ) and minors with symptoms are called minors. It is finally beginning to be recognized that many minors do have symptoms and also that many minors also have other genetic variations that can affect their health in combination with the thal genes. The time for just dismissing minors with a statement that minors have no symptoms should be gone. We now know better and those at the forefront of genetic research are finding many different gene combinations that explain why some "minors" have a condition much more like intermedia. A good example from our group is Vincenzo (C3nZ0) who has a good hemoglobin level but still has a unique condition that leads to the iron overload problems often seen in intermedia. I think we are seeing far too many of these cases to think that we are anywhere close to fully understanding the different degrees of thalassemia or the problems caused by other various gene mutations.

Natalia, did the doctor give any explanation for your liver being enlarged and have you ever had your blood serum ferritin tested?
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Andy

All we are saying is give thals a chance.
Natalia
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« Reply #9 on: January 05, 2007, 06:59:13 AM »

Andy, thanks so much for very clear explanation, i realized now that there are so many things i dont know abt this thal thing.  I've never done blood serum ferittin test, and never knew what other test i should have gone thru.  I took it for granted as that first time i was diagnosed with thal, doc said there is no cure and it's just genetic, beside, dont have to worry as its only minor. Doc also said that enlarged liver is common for thal patient.  Is that right, i dont know. So again i didnt do anything abt it, until it really feels stuck in my ribs now wen i lay down  Undecided 
I guess many thal patients here in my country are not treated properly as it seems like uncommon lethal disease unlike HIV or hepatitis. So less information we can find.
Really good to share with you all, really open my eyes...
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C3nZ0
I'm thal Int, but minor trait
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« Reply #10 on: January 05, 2007, 08:41:36 AM »

[Don't worry Danielle]

Hi Natalia,
I write from Italy.
I thought that I was MINOR, but after some problems and genetic test, now I know I have Tal Intermedia (light; my trait is Minor whit my hb>>10, but my geno-type is Int.)

Your Hb is very low for a minor... can you make a deepened tests?
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Manal
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« Reply #11 on: January 05, 2007, 11:25:12 AM »

Hello Natalia

Welcome to the site, i know you will enjoy it.

I am too thal minor and my HB is 9, but i found too that i have iron defeciency. I am having iron pills now to raise the level of iron in my body. I guess that you have to make the iron deficiency test first because this might be a reason for low HB.

Please feel free to ask anything you want
Take care :hug
Manal
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Natalia
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« Reply #12 on: January 05, 2007, 02:35:29 PM »

Yes, c3nzo,I will sure have further test, after all info i got. Abt iron that manal said, here i become confused, as doc said i should take supplements that does NOT contain iron    Guess i havent found the right doc here that understand what he is talking abt...
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Manal
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« Reply #13 on: January 06, 2007, 01:07:42 AM »

Dear Natalia

Normally when you have low HB, your body tends to absorb more iron in the guts( a sort of a defensive system ) to help in increasing the level of HB. But since we thal have a genetic problem in formation of the Hb and it is not an issue of iron, so the body fails to increase the level of HB this way. The result is that iron starts to overload because the body does not stop absorbing since the HB hasn't increased. That is why doctors tell you not to take  supplements that contain iron. So that is the default of thal.
In some cases like mine, your body hasn't got enough iron intake may be because of unbalanced diet for example( since i eat a lot of junk food, i don't take supplements and usually i don't eat much meat in addition to absence of vegetables and fruits ) or may be for any other reason that i don't know. So in this case i need iron so i have the normal level like any body else. For example in my two pregnancies when i was on supplements and iron pills ( at that time i didn't know that i was a carrier ) , my health was super and my HB was around 11.5

Hope that my explaination is clear to you and i guess it is important to know whether you have iron defiency or not

Take care
Manal

 
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Andy Battaglia
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Will thal rule you or will you rule thal?


« Reply #14 on: January 06, 2007, 01:30:44 AM »

Manal,

You have brought up an excellent point. Even though iron is normally useless for thal carriers, there are some thals who also have iron deficient anemia. And Manal, in your case I would agree that your anemia comes from an unbalanced diet. Green vegetables would be a big help and if you bake at all, try adding some wheat germ to the recipe. Wheat germ is the inner part of the wheat kernel and in addition to vitamins, it contains high amounts of iron. It has been very helpful for me when I suffered from anemia. Iron rich plant foods are also much easier on the digestive system than iron supplements.

Natalia, you should indeed have your iron levels checked with a serum ferritin test. As Manal stated, iron overload can sometimes become a problem as your bone marrow works harder to produce more red blood cells which leads to your gut absorbing more iron than it needs. You need to establish whether or not you do have an iron deficiency. Did you ever have your Hb level checked before you first became pregnant? I would like to know if this was a problem before pregnancy or if it began during the pregnancy.
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Andy

All we are saying is give thals a chance.
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