Patient Comments: Beta Thalassemia - Symptoms

Question:Please describe your beta thalassemia symptoms.

Comment from: Michele, 45-54 Female (Patient) Published: September 18

I was diagnosed with beta thalassemia minor at birth in 1964; my father also was diagnosed with beta thalassemia at birth in 1942. Both of my grandparents had beta thalassemia, and my grandmother gave birth to four children. One died in his first year of life of thalassemia -- he was a major. I have noticed throughout my life that I am always tired, often fatigued, and that once I get sick with a cold or flu or anything really, it takes me twice as long as most people to get well. I had a lot of trouble with my bladder and kidneys when I was in my 30s and have had stomach problems for as long as I can remember. I am not sure if any of these issues are connected to thalassemia or not.

Comment from: NYMike, 45-54 Male (Patient) Published: October 31

I have thalassemia minor and I'm a 53 year old male. I never have been tired or show any symptoms at all. I'm an overweight male who eats garlic and fatty food and cheese with a cholesterol of 134 and extremely clear arteries and no plaque after a recent cardiac cauterization. But my spleen has been just checked and is enlarged causing a low platelet count. I am going for tests on that now to determine the cause.

Comment from: Jan, 65-74 Female (Caregiver) Published: May 13

I have thalassemia minor. I am not sure of the type. I"m not supposed to have symptoms but have had jaundice in my hands and in the sclera of my eyes. I also have had blood work preoperatively that showed sickling, causing cancellation of surgery. My current blood picture is one in keeping with thalassemia. Makes me wonder!

Comment from: maryjc55, 19-24 Female (Caregiver) Published: January 08

My daughter in law was diagnosed with beta thalassemia. I am concerned about her health as well as that of my grandson. She gets fatigued easily and has been sick for a couple of weeks without getting better. Her doctor told her there was nothing that could be done for her condition.

Comment from: NicoleB, 25-34 Female (Patient) Published: May 25

I have been diagnosed since 1999 with beta thalessemia. I have always been tired and doctors told me my iron levels were severely low. I had two children and had to take shots in order for it not to be transferred to them. But, neither of my parents have this trait nor does anyone in my family. I have under gone gall bladder removal, and now I suffer from severe intestinal problems. I cannot use the bathroom at all, my stomach irritates easily, my thyroid is now not working at all. I have no idea of what to do, I am 29 years old and I act like I am 60 years old. I cannot run and play with my children eat sleep or anything. No doctor can give me a real answer or treatment for this.

Comment from: talkyc, 35-44 Female (Patient) Published: December 28

I was diagnosed with beta thalassemia minor at age 3 (inherited from my father). I was very sick as a young child, but as a teen and young adult I had very few symptoms (I get winded very easily and can't hold my breath for long under water). I am 41 and over the past few years I have had issues with fatigue, general weakness, and easily getting sick, along with cholecystectomy (gall bladder) and oophorectomy (ovary) surgeries - all of which no doctor has ever directly attributed to my thalassemia. A big concern for any thalassemia patient is to find a doctor that is knowledgeable about the anemia and is attentive to the specific needs of these patients. I have met very few doctors that even know the term, so make sure to ask! Overall, I am pretty healthy - I just have to be wise to the potential problems. I hope this helps somebody else! This is not some trifling disease. This is deadly serious stuff.

Comment from: agguy, 65-74 Male (Patient) Published: December 28

I was diagnosed with Thalassemia minor in 1966. Other than getting tired occasionally, it never really bothered me until 19 months ago when I experienced excruciating pain in my groin area. After 9 doctors, I was finally diagnosed with Avascular Anemia which has destroyed my two hip joints resulting directly from Thalassemia minor. I had never heard of this until now and apparently, neither has the medical profession. I just had one hip replaced and the other will be done next year. My son has also tested positive for Beta Thalassemia. I needed 6 packed red blood cell transfusions to get through the operation due to extremely low blood counts. As far as I understand it, there is no medical treatment for Thalassemia minor but my son and I are going to pursue all possibilities so that when he hits my age, he won't suffer the same disaster.

Comment from: y.drungbal, 19-24 Male (Patient) Published: September 10

I'm 20 years old and I've beta thalassemia intermediate and it was diagnosed in 1999. But since then I never needed blood transfusions but form last 2 years I have to do blood transfusion every month. I am unable to do most work.


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