Patient Comments: Beta Thalassemia - Symptoms

Question:Please describe your beta thalassemia symptoms.

Comment from: pewtiepie, 25-34 Female (Patient) Published: March 06

I have just recently found out that I have thalassemia minor (about a month ago). My entire life, I have always been very tired. Even as a child, I often did not have the energy to play outside with other children or engage in a sport for long-term. My mother always took me to the doctor about this, and we were always told that I had anemia (so I was given iron supplements). The supplements never entirely helped, so I just learned to accepted that I would always be tired my entire life. Recently, however, when I turned 31, I noticed pain in my upper right abdomen, along with kidney pain. I went to a doctor about this, and he tested me for a variety of things, and that"s how I found out about thalassemia. It constantly feels like my gallbladder is in pain, and my kidneys as well. I feel even less energetic than I usually do, and I get cold very easily (this has always been an issue for me). Whenever I get sick, it does take me a bit longer to recover from that as well.

Comment from: Julieanne, 35-44 Female (Patient) Published: February 06

I am a 40 year old woman and have thalassemia minor and out of 4 of my children 3 of them have it also. My son who is 19, gets breathless easily as do I and drinking alcohol, hangover is worse for us. We both have stomach problems doctors say it is fine but try living with it! It's scary sometimes and you can't breathe doing small simple tasks. We take folic acid 5mg a day. I just wish there is more information on it and what to expect when we are older as I'm hearing some scary information and don't know if that could be me one day a good blood doctor needs to examine me.

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: 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: Hannah, 13-18 Female (Patient) Published: December 17

I was diagnosed with beta thalassemia a year ago, and I have found that where my friends could take a matter of hours to burn off alcohol, however for me it feels like days.

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.


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