Patient Comments: Beta Thalassemia - Symptoms

Question:Please describe your beta thalassemia symptoms.

Comment from: Simeon, 35-44 Male (Patient) Published: November 30

I was diagnosed with thalassemia minor at 28 years old. I noted huge change when I turned 15; constantly feeling tired, dizzy spells, being overly thirsty, poor vision, sleep problems and joint pains. As for thalassemia minor being a defense against malaria, I am a bit critical. I got over 7 episodes of serious malaria with the final one over 18 years ago almost killed me.

Comment from: PtAngeles, 55-64 Female (Patient) Published: November 30

I was diagnosed with Mediterranean thalassemia about 16 years ago. I was always a sickly child. I had sore throats, ear infections, anemia and mononucleosis twice. Fair skin, with dark circles under my eyes. I was always tired and fatigued with no energy. My body wouldn't absorb iron or supplements, they just made me sick. As an adult, I often get flu like symptoms, am cold and achy a lot. I am always tired, always feel like I need to nap. I have had gallbladder removal and I have an enlarged liver that apparently looks like I drink alcohol a lot. Which I do not and never have with the exception of a few years when I was college age. I do have issues with altitudes and shortness of breath. My doctor had once said she was surprised I could walk up a flight of stairs, my red blood cells were so odd shaped. I'm also diabetic. I was receiving infusions every 6 weeks to 2 months apart. But, I really never felt better except for a few days. Just seemed to lose a lot of hair. I haven't pursued any treatments in the last few years out of frustration. When I moved and went to an oncologist, he said he couldn't say one way or another if I had it or that he agreed with my diagnosis.

Comment from: James, 19-24 Male (Patient) Published: April 28

I was diagnosed with beta thalassemia minor. I had my gallbladder taken out when I was sixteen and have always had abdominal problems, joint pains and lightheadedness.

Comment from: Greencrayonn, 35-44 Female (Patient) Published: March 10

Both by brother and I were diagnosed with beta thalassemia trait in high school from a basic blood panel. We both do not have any symptoms like many of you have described and are fairly healthy. I'm 35, pretty active, and in the military and do not suffer any fatigue.

Comment from: jen j., 35-44 Female (Patient) Published: April 24

I was diagnosed only after my son was diagnosed with thalassemia minor and had always had doctors tell me I needed to take extra iron that made me feel worse. I had my gallbladder taken out at 19 which the doctor stated was the youngest he had ever heard of. I have had two miscarriages and never even thought of it having something to do with the thalassemia. I also used to have kidney infections all the time when I was younger. I do get cold a lot and people think I am crazy or making it up.

Comment from: Kay, 3-6 Female (Caregiver) Published: December 15

My mother is 81 years old and has suffered from vertigo for quite a few years. The doctors and specialists have said it is because her ear canals are very small and there is nothing they can do. The last 2 months she has got worse.

Comment from: btsfrustrate, 45-54 Female (Patient) Published: September 17

I have had dizzy spells, anemia and balance problems all my life. I have also always had joint pain. I was diagnosed as having beta thalassemia minor in 2012. I just try to live with the dizzy spells. My doctors act like it's no big deal, but it's a big deal to me! The older I get the harder it is for me to maintain.

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.


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