Searching for answers on Thal minor

Hi!  I just found this site and wanted to introduce myself.  I'm a 36 year old mother of two boys, 8 and 4, and we are all Thal minor.  For years doctors told me I was iron deficient.  When I was pregnant with my first son, I was put on iron supplements but stopped taking them without telling the doctors because they made me feel so bad. My father was always told that he had Pernicious Anemia and was given B-12 shots.  Before I became pregnant with my second son, one of my father's brothers was diagnosed with Thal minor.  I suspected then that we had the same thing as my son's pediatrician said he was iron defiicient as well.  It was not until I was pregnant with my second son that I was tested for it.  I was seeing a different OB/GYN and they knew something was not right with my initial bloodwork but were not sure what it was.  I told them about my uncle and father having Thal minor so they tested me for it and of course that is what I had.  I had both my sons tested about 3 years ago and they have it as well.  Their doctor sent us to a specialist at a childen's hospital but he really did not tell me anything I had not read myself already.  They basically told me that there are no sypmtoms other than mild anemia but many things I've read by others who have it suggests otherwise. 
I'm searching insight from others who have this disorder...  1.  Why does it seem to be so easily misdiagnosed?  2.  Does it really cause fatigue? (sometimes I'm so very tired for no apparent reason and even after 8 plus hours of sleep).  3.  Should I and my sons be taking supplements of some kind?   4.  Could mild dizzy spells be caused by it? 

I would greatly appreciate any insight or advice anyone has to offer...  Thanks in advance! 

Diane

Welcome to the group.

We recently had some good postings on the classification and effects of Thal minor. Below is the link attached.

http://www.thalassemiapatientsandfriends.com/index.php?topic=1444.0

Thal minor is often misdiagnosed as iron deficient anemia and your story is no different. Thal minor causes fatigue and later in life can cause some health problems. We have an extensive discussion board on Thal Minor please read through it.

The most important advice for you is to get your husband checked if he is thal minor, that risk having a thal major child which has no cure and requires life long blood transfusion and iron chelation associated with long term health problems. Your children need to be educated about their condition and in future they should avoid marrying another thal minor for future generations.

Keep asking questions to clarify all your concerns.

Thanks so much for the quick reply... I'll check out the link.

My husband was killed in an accident four years ago and did not have the Thal trait.   He was a regular blood donor.  I had a tubal ligation after my second child so I won't be having more children in my future...

thanks again!

Hi Diane and welcome,

Every symptom you mentioned, including the dizziness, has been reported here by other thal minors. Yet, almost every doctor will give you the same litany...mild anemia at most and no symptoms. Well, the doctors are quite wrong on this and the reason they are is because they are simply repeating what they have read in the texts. This is not based on experience with thal minor patients. And obviously if they have such a hard time recognizing thal minor, they don't have much personal experience with the condition.

The reason it is not easily diagnosed is that most doctors automatically think iron deficiency when they see anemia and don't even run the proper iron studies that can determine iron deficiency. An examination of red blood cells under a microscope can usually show the small irregular red cells associated with thal minor. Further testing, such as hemoglobin electrophoresis can verify the diagnosis.

Please do what Canadian Family has suggested and read through the wealth of information on thal minor that we have on this site. And pay special attention to the advice to educate your children about their carrier status so they can avoid having thal major children with another carrier. If there is any piece of advice you should listen to in your entire life, it is that. Major can easily be prevented by making carriers aware of their status and the risks but only if carriers take this seriously. Most parents would not willingly put their children through life as a thal major and will tell you if they had only known, they would have proceeded much differently.

My husband was killed in an accident four years ago

Diane, I am so very sorry for your loss. 

Welcome to the forum. It's nice to have you here with us.  Ask as many questions as you'd like.  You'll find an abundance of information here.   

Welcome Diane.
Losing a partner is never easy this would have increase the stress in your life.being a single parent its hard too.more stress and thus in return would worstened your thal condition

I suggest you minimize and re arrange your life, reduce the stress in any way possible.
Eat a well balance diet with low fat, low sugar, low salt. Exercise as you can tolerate i find walking is a good way to do it. its not too strainueous.
Then get yourself a good general medical practioner .that will listen and work with you to manage your health.
Read and research, as much as you can, on the topic.
This forum can assist you with this ,you
 have a world of informations here at your finger tips.
ask any question  that you wish, one of us is always ready to answer .
As years goes by, you will need the support ,so dont feel shy make the most of what is at hand.

We are here for you and good luck
Kathy

   Diane, to the family!

ZAINI.