Patient Comments: Beta Thalassemia - Symptoms

Question:Please describe your beta thalassemia symptoms.

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: 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.

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: 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: 55-64 Female (Patient) Published: May 14

I was diagnosed with beta thalassemia as a child. Now in my sixties I am not able to tolerate high altitudes. Even 5400 ft. elevations cause me to have severe breathing problems and increased urination.

Comment from: WitchyPooh, 35-44 Female (Patient) Published: April 24

I was diagnosed with a mutative type of beta thalassemia. I required many blood transfusions as a child. I also have low iron so chelation therapy was not needed. In my early teens the need for the transfusions stopped as my red cell levels became normal and was re-diagnosed as having beta thalassemia minor. A few years later, after needing a transfusion I was re-diagnosed as thalassemia major. That diagnosis was changed to thalassemia intermedia. My parents were told I had a rare mutative self-remissive beta thalassemia. (Meaning I could have no symptoms at all to being in need of life saving blood. Most doctors aren't familiar with it and those that are dispute the diagnosis because it doesn't fit the 'standard' of what beta thalassemia should mean.

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