I just heard of thalassemia for the first time yesterday. I think I may have it. I'm Italian, and no one has been able to figure out what's going on with me. So I'm excited to find this group, and hope tol talk to the hematologist tomorrow after I get my infusion.

Oh good, i'm so glad you already have a hematologist,
Especially with you being Italian your chances are higher. studies have shown that thal's do has symptoms. and your blood will always look like your anemic even if your not. so its very important to know if you have this. you should never need iron. and if your truly anemic that is the only time for iron. but be careful. this cannot be corrected with iron if thalassemia. A thal. usually has a problem with iron overload and it settles in your organs. So make sure your Dr really understands Thalassemia. If he continues to give you iron, this could be doing more damage then good. its a very thin line on watching your spleen and knowing what your normal levels are.

i recommend you go to a forum called "thal pals". its a great website i just found, full of all the info you need. it has helped me alot.

let me know what your dr says

best of luck

Sandi......why not stay here and have your other group. You have taught us so much already. More input is always good.

lets hope more people will find this and come join

my niece is 20 years old.she lost her mother , my sister when she was 6 years old in a fatal car accident.my mother was her gauardian until she passed 2 years ago.now between her god mother(,her uncle)who she lives with in the home house, we together do all that we can for her.she is not an invalid.but she doesn't have a car yet.she has had low blood since she was very young.my husband and took her for a check up last month and her hemaglobin was 6.the dr. referred her to a hematologist .who told her to take her iron pills twice a day instead of once a day. when we took her back to the hematologist her blood count was up to an 11, but all he had done was a cbc.her primary dr.,when we went back to her had tested her blood more indept and told me tha she had a kind of thalassemia that i do not recall now. the dr. told us that she would probaly have to take iron all of her life.do you know the other kinds of thalasemmias and it just did not sound right having to take iron the balance of her life.need info. and help. i am a stroke survivor and doing good with the help of a rolater.my husband drives us to apointments, and he is very good about it thank GOD.just a little info. about myself.i would like some advice please! thanks and stay well !!!!!!!!!!

There is trait, Minor, intermediate and major.

If she is even minor, there is no need for iron. unless she is low on ferritin. her RBC will look off due to Thal. But it doesn't mean she's anemic. many Dr's get confused with this and prescribe iron. iron will make her worse. unless she is truly anemic.
please go to the web site "thal pals" and learn as much as you can there and ask questions.
I'm worried I just don't know enough to give the proper advice for her.

let my know if you have problems finding that website

my blessing sandi

http://thalpal1.multiply.com//ThalassemiaPatientsandFriends

here it is. talk with Andy. he has helped me a lot

Hi! I also have beta thalassemia! Was diagnosed 5 yrs ago!
To top it all off I also got diagnosed with hypothyroidism 3 years or so ago and I am having lots of problems because of it.
I lost my job last year due to time off sick, I have carpal tunnel, arthritis in hands, restless leg syndrome, always tired and energyless and lethargic.
I have crashed my car falling asleep at the wheel.
What symptoms do others have with this? I am interested to hear about other people's experiences with thalassemia!

I have thalassemia as well.
I would be very interested in a support group or thread that was about it.

Is this group still open?