Beta thalassemia intermedia

Posted by lilithschof1358 @lilithschof1358, May 29, 2021

I have beta thalassemia intermedia. I’ve gotten really sick recently and I’ve been throwing up blood, is my body trying to get rid of irons in my body? I’m constantly faint, dizzy, moody, my stomach is a bit swollen, my stomach always hurts, and my throat burns. Should I talk to my doctor about iron reducers and blood transfusions.

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Lori, Volunteer Mentor | @loribmt | May 29, 2021

Hi, @lilithschof1358 welcome to Mayo Clinic Connect. We’re an online community backed by the Mayo Clinic but members aren’t medical professionals so we can’t diagnose. However we can rely on our own experiences, research and valuable insights we’ve learned along our own personal journeys.

Are you receiving blood transfusions for your BTI? Have you been told your ferritin levels are high? This is a common side effect from transfusions. That can cause serious health issues if not addressed.
Honestly, if this were me, I’d beat feet to the doctor ASAP! Throwing up blood and feeling as awful as you do warrants a visit.
https://www.mayoclinic.org/diseases-conditions/thalassemia/symptoms-causes/syc-20354995

Colleen Young, Connect Director | @colleenyoung | May 30, 2021

@lilithschof1358, how are you doing today? Is your doctor aware of the symptoms you're experiencing. I completely agree with @loribmt that you should talk to your doctor about this. I hope you're feeling better today.

lilithschof1358 | @lilithschof1358 | Jun 11, 2021

In reply to @colleenyoung "@lilithschof1358, how are you doing today? Is your doctor aware of the symptoms you're experiencing. I..." + (show)

The ER keeps telling me nothing is wrong with me. I’m almost positive I have too much iron because of my thalassemia and my body is trying to force it out of me however I can.

kohlgryl079 | @kohlgryl079 | Jun 12, 2021

Please contact an endocrinologist, asap. I suffered for years, my parents were investigated abuse.

palermo1 | @palermo1 | Apr 27 10:01am

In reply to @lilithschof1358 "The ER keeps telling me nothing is wrong with me. I’m almost positive I have too..." + (show)

Are you on a chelater? My son has thalassemia and gets transfusions, but he's on jadenu for iron because of transfusions he has to get rid of iron

Lori, Volunteer Mentor | @loribmt | Apr 28 9:14am

In reply to @palermo1 "Are you on a chelater? My son has thalassemia and gets transfusions, but he's on jadenu..." + (show)

Welcome to Connect, @palermo1. Thank you for sharing your son’s experience with receiving blood transfusions for his anemia and the need for chelation. While a life savers, the transfusions can leave the side effect of too much iron being stored in the body. Chelation is a means to remove the iron.
Beta thalassemia intermedia is an inherited condition. Do other members of your family have this as well? I’ve read that a bone marrow transplant can be a possibility of a long term treatment. How long has your son had his symptoms?

palermo1 | @palermo1 | Apr 28 9:35am

My son has been having transfusions since age 3 he is 36 now , he gets transfusions every 3 weeks, and uses jadenu for chelation, we are hoping for something that could raise his hb , without marrow transplant, or gene therapy, I have minor and so does my husband, its inherited so he got both bad genes and has intermedia, but its more like a major, he feels fatigue alot, yellow skin especially when its time for blood.

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