Patient Comments: Beta Thalassemia - Symptoms

Question:Please describe your beta thalassemia symptoms.

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: 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: 3dmjd, 65-74 Male (Patient) Published: January 20

I was just diagnosed today that I have beta thalassemia, a minor version of it. I had a hip replaced last year and could not give my own blood for my surgery. I was not told about this disease until a few weeks ago, and then tested with the results now. I feel great and have energy, but I have not gone back to work as of yet. In two weeks I will return to work- hopefully I won't have any bad symptoms. Hope there will be a cure someday.

Comment from: fatigue, 55-64 Male (Caregiver) Published: December 16

My husband has Beta Thalassemia and he was told other than having small red cells he was to drink no alcohol. He suffers from extreme fatigue and at times cannot do even the lightest of tasks.

Comment from: proudmomma, 55-64 Female (Patient) Published: May 18

I was diagnosed recently with Beta Thalassemia Minor. Although I keep reading that I should be asymptomatic, I have always been unable to do anything aerobic. If I tried to hike or run, I would quickly get short of breath--even when I was young and healthy and working out every day.

Comment from: nikuj tejani, 13-18 Male (Patient) Published: May 12

My result of testing: negative for typical beta thalassemia minor.

Comment from: RA, 45-54 Female (Patient) Published: April 01

I have been diagnosed with having Thalassemia Minor since birth. In 2009 I undergone Liver Treatment with Chronic Hepatitis C. I was placed on the Peginterferon and Ribaviron medication. After 5 months I was very very weak. I was told by the nurse practitioner working with me ( Never once did I see or hear from the Doctor) to drive to Denver (almost 300 miles away) to speak to a Hepatologist. My daughter came with me. The Hepatlogist told me to immediately get off the treatment because it was killing off too many red blood cells. I also have nerve damage that has left me to suffer with a horrible itch. I have a new Gastroenterologist now and am scheduled to have a colonoscopy done and blood test. Thankfully, he IS upfront and honest and SPEAKS to me.


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Beta Thalassemia - Share Your Experience Question: Do you or a relative have beta thalassemia? Please share your experience.

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