Thalassemia Patients and Friends

Discussion Forums => Thalassemia Minor => Topic started by: Danielle on February 11, 2006, 06:23:48 AM

Title: How did you find out?
Post by: Danielle on February 11, 2006, 06:23:48 AM
How and when did you find out you had Thalassemia Minor/Trait?

Most of the people that I know, only found out because they ended up with a child that had the more severe form (Major/Intermedia).  As a matter of fact, my parents had no idea they carried it, until I became very sick when I was little.  I was diagnosed with Thalassemia Major when I was 9 months old, and that's when I started hypertransfusions.

After I was diagnosed, my whole entire family went and got tested.  They couldn't believe how many of them actually carried the trait.  Now, in this day and age, they do a lot of genetic testing, as to rule out Thalassemia before birth, which I think is great.

The funny part of my story (well, not funny, but odd) is that they DID test my mother's blood before I was born, and they wrote down "Rule out Thalassemia" in her chart ... but they never told her, and they never followed up with it.  She didn't even know that they wrote that, until way after I was born and diagnosed.  I have to be grateful that she didn't know, though ... because the doctors might have told her it was best to terminate the pregnancy, and maybe I wouldn't be here.  Weird how things work out.   :biggrin

So, how did you find out? 

Title: Re: How did you find out?
Post by: Amit on February 16, 2006, 07:42:37 AM
Hi guys, my name is Amit and I am from New York as well. It was great to find this site.

From the test results I have so far, I suspect I have Alpha Thalassemia Minor, although I haven't of course had any special or conclusive tests done to know this for sure. I started suspecting this since 2004 when after a routine CBC test, my MCV and MCH levels were below normal, and my RBC levels were slightly elevated. Sometime later, I had hemoglobin A2 and F tests done, which showed normal levels of both. I'm of (East) Indian origin, so that matters.

I really feel quite all right.  I don't have any health insurance at this time to retake any tests, but in any case, here are some of the relevant parts of my past test results, and perhaps someone could help me confirm whether I've the trait:

Hemoglobin: 14.10
Hemoglobin Range: Normal
RBC: 6.30
RBC Range: High
MCV: 68.40
MCV Range: Low
MCH: 22.50
MCH Range: Low
RDW: 15.70
RDW Range: High
Target Cells: Moderate
Microcystosis: Moderate
Tear Drops: Slight
Elliptocytes: Slight
Large platlets: Occasional

Hemoglobin A2: 1.8
Hemoglobin A2 Range: Normal
Hemoglobin F: 0.0
Hemoglobin F Range: Normal

Title: Re: How did you find out?
Post by: Danielle on February 22, 2006, 07:36:46 AM
Hi, Amit.  Nice to see you posting here.   :biggrin

If I had to take a guess (not diagnose) from looking at your lab values, I'd say it looks like Alpha Thal Minor for a few different reasons, but that doesn't mean that this is the case. 

Your HgB is normal and RBC's are high, but your MCV and MCH are low, while your RDW is high, and both your HbA2 and HbF are normal ... which is all prevalent in results of Alpha Thal.   Your HgB and RBC's are in a really good range, so you don't have to worry about anemia at the present time, which is great.  :biggrin

Let us know if you find anything out.   :)

Title: Re: How did you find out?
Post by: ahumar on February 22, 2006, 11:19:54 PM
I agree with you Danielle

Title: Re: How did you find out?
Post by: Narendra on March 10, 2006, 05:51:34 PM
I found out I have the Thalassemia(Minor) due to my Primary Care Physican. I went for my regular physical check up(This is a nice thing in USA - when you have insurance) and the doctor asked me to go to a Hemalogist/Oncologist Specialist as he found out that my RBC size is a little smaller than normal. Although, they are in the normal range, she wanted me to go to the Specialist. I hate going to doctor's without a reason, but my wife and my doctor did NOT let me slip. I complained about getting tired to my doctor(but I thought that was due to being a person who works 10 hours on the computer daily and being awake sometimes at night as I was a new dad trying to help my wife with the baby). Well, so I went to the Oncologist and he asked me for a lot of symtoms (like headache/pain etc). I said none of those things happened to me and then when my blood reports came(I guess that was Electrophoresis), he told me I have Thalassemia(Minor). This is the first time I had heard the name. I asked him what does that mean to me and he told me NOT to worry about it and live a normal life. (He should have warned me that if my wife had Thal{Minor} - we might end up having a Thal{Major} child - but there was no such warning).

So, I went in to my normal life and after a month I got a phone call from India from my sister mentioning that my neice is diagonised with some Anemia and that her blood reports show there is something serious. I asked for the blood reports and when I got it, I read the word Thalassemia{Major}. Immediately, I got on to the internet and within few hours, I knew what it really means. I have 2 kids - 4 years and 1 year old. I started thinking about them. But, luckily my wife is NOT a Thal{Minor} and my kids might be normal or may be Thal{Minor}.

This is a very common disease in Gujarat{the place I am from}. There are more than 500 patients being treated with blood transfusions in Surat alone{The city I am from}. I kicked myself for the ignorance and ever since I inform any friend who is about to get married or about to plan for a baby to get themselves checked. We all together by sharing the Word can STOP this deadly disease. I know in some school's in Gujarat they check the students for Thal and are very aggressive trying to STOP this disease.

Let's spread the word.


Title: Re: How did you find out?
Post by: bloody on March 10, 2006, 10:07:22 PM
hi all - 21 m Malta -
(in fact i m positive that lisa camilleri has relatives in malta :)...that surname is very common here)..and even beta thalassaemia

thalassaemia minor as well - found out by suspecting it since my mother had it, and like her, her mother, 2 sisters, some 3 cousins etc  heh - i'm a medical student btw
pretty useless condition dont u think? probably it originated to help us (the heterogenous) from some other disease ..maybe malaria just like sickle cell ...
u all seem to know much about the tests conducted to diagnose this trait...its nice that u're that interested ...basically this trait wont really affect us unless we happen to find our partner with the trait...( try not to go for someone with a mediterranean anscestry) :)

the only positive connection of problems associated with the trait which i found (up to now) was angioid streaks (an ocular prob) which is also rare,  and possibly not being able to donate blood if ur haemoglobin happens to be low on that day ......

Title: Re: How did you find out?
Post by: bighong on April 07, 2006, 09:20:33 AM
Hi i am from singapore. A singapore chinese. i have a twin brother. He was national service body check up when he found out that he has beta trait. my health was perfectly fine all the while. my mum has anemia and in weak health. so we confirm that she pass down the trait to us. i went for a test and confirm i has beta trait too. my brother and i was identical twins. the doctor says if my brother has it 100 percent i has it too. Hm...

Title: Re: How did you find out?
Post by: theresa on May 06, 2006, 03:48:04 AM
my parents found out that i had thalassemia minor when i was a young child. my younger brother developed some symptoms that doctors couldn't work out. as it happened, the doctor that mum and dad took him took had just finished reading about thalassemia and decied to test him for it. sure enough, he had it. this all happened back in the '70s and it was then believed here in australia that only the male carried the trait so dad got tested and so did i. we all have it. about 20 years later, mum got really ill and doctors were testing her for everything known to man and they discovered that she also has it. i had my son tested when he was 4 and he has it too. i really want to learn more about it because i honestly don't know enought about it

Title: Re: How did you find out?
Post by: drievermom on July 11, 2006, 11:20:54 PM
Like an earlier responder, I had a wonderful GP in New York that first discovered I had Thal trait.  When I first moved here after college to take a job, some of the early testing that the company did showed abnormal results in my urine.  They suggested I find a local doctor and have further testing done.  The urine issue was unrelated and minor, but in the process of diagnosing that the GP did some blood tests.  When the initial results came back he asked my permission to do further blood testing for "an unrelated matter".  The electrophoresis he ordered confirmed his suspicion that I had Thal trait, and he explained its implications to me (I was single at the time, but he explained what I should be alert to relative to genetic testing of any future spouse), and he suggested that any siblings I have also get tested.  I have one sister, so I passed the word on to her.  She went to her doctor and requested the test, and he thought she was crazy but he did it.  When her results showed she, too, was a carrier he expressed respect for how alert my doctor had been.  Both my sister and I are always somewhat anemic (I moreso than she), and the gene was likely passed on by my Italian father (who was deceased by that time).  I have since married and given birth twice, and it was during both pregnancies that the Thal caused any sort of real problem (I had to have blood transfusions during both pregnancies due to extremely how Hgb counts).  On the first pregnancy I told the OB/GYN up front that I carried the trait, she ordered genetic testing for my husband, but otherwise didn't think anything of it.   Since I was already anemic, she prescribed the standard pregnancy  1 iron pill per day.  Months later when I was VERY anemic, she sent me home with the advice to take 2 iron pills per day!  Fortunately she also consulted an internist, who realized the error of her ways and ordered blood transfusions ( the hospital) and told me to cease taking the iron pills since they wouldn't help and could possibly hurt.  My son was born a healthy 7 lb. 6 oz.  Eight years later when I became pregnant with my daughter (and had moved on to a new OB/GYN) I told him of my trait and prior experience and things went a little smoother.  We did have to do blood transfusions again though, as my Hgb was so low he said that if I needed an emergency C-section he wouldn't be able to give me anethesia!  But she, too, was born a healthy 7 lb. 4 oz, so the story has a happy ending.  As for passing on the trait, while I have not yet had testing done on either of them, I believe my daughter carries the trait but not my son (just guesses, as she is slightly anemic and he is not). 

Title: Re: How did you find out?
Post by: §ãJ¡Ð ساجد on July 12, 2006, 04:56:20 AM
Welcome to the site drievermom!

Good to know that you don't (and hopefully won't) have a Thal. Major issue. Just take vitamin supplements that don't contain Iron and always remember to take you Folic Acid pill and everything will be smooth and normal.

Best Wishes!

Title: Re: How did you find out?
Post by: drievermom on July 12, 2006, 01:45:07 PM
Thanks, Sajid!  I also want to say that I think this site is great!  When I was looking for info during my pregnancies (and my Thal trait really kicked in) there was nothing out there, and no such forum where I could go to ask questions.  All the articles/sites I found on Thal minor seemed to imply I should be having no problems, yet I was.  When mine were obviously minor (no pun intended) relative to those of you that struggle with the real issues of Thal major, any problems during pregnancy are of concern to a mom-to-be (questions came up...even voiced by the doctors....such as "since the baby gets its oxygen through the Hgb, and I didn't have much, was the baby being oxygen-deprived???").  I'm grateful all turned out well in my case, but I sure wish this site had existed back then so I could have had a place to go with my questions and to talk with people who would understand.  Keep up the great work Andy, Danielle, and everyone else who keeps these forums going!