Blood Type Changed

Posted by loricehoward @loricehoward, Feb 2 8:40am

My daughter has Alpha Thalassemia and her blood type recently changed. She doesn’t take blood transfusions .She has extreme fatigue daily. She takes Folic Acid and vitamin B12. So far there is no explanation for the blood type change but what I read about it online scares me. What should I specifically ask for to rule out an underlying leukemia or cancer brewing? Her labs don’t show these but my research shows any blood type change is rare and usually means there is another serious underlying condition. Would a flow cytometry test determine this?

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@loricehoward. I’m not a medical professional but I have a deep interest in blood conditions and cancers since going through my own experience with an aggressive form of leukemia and a bone marrow transplant a few years ago.

From my understanding, a person’s blood type is hardwired, pre-programmed into their DNA. It’s not something that changes on its own. Even if your daughter had transfusions, which she hasn’t, the blood type can’t change. A mismatch can be fatal.
I’ve done a lot of research on this subject over the past few weeks and the only way, outside of lab research right now, to change a person’s blood type is through a bone marrow transplantation.

With a transplant, the host has all of their bone marrow stripped clear inside by heavy chemotherapy. Once the marrow is clean, new cells are either implanted directly into the marrow or there is an infusion of stem cells released into the blood stream that eventually find their way into the squeaky clean marrow. The old marrow is gone, but the new, donor DNA starts setting up housekeeping with its own DNA, not that of the host. So the host’s blood type can change. That did happen to me. I went from my B+ to my donor’s O+ months after transplant.
This may actually be an option for curing your daughter…to have a stem cell transplant that completely replaces her defective DNA in blood manufacturing site in the marrow. It is listed as a possible cure for AT.

If your daughter hasn’t already, a bone marrow biopsy and aspiration, with a flow cytometry test could be a very important tool for finding answers. It may not solve the mystery of the potential blood type change but it could help her doctors discover more about her current diagnosis and possible treatment.

There are 4 types genes that make hemoglobin. The 4 types of Alpha Thalassemia are based on how many of those 4 genes are missing. https://www.hopkinsmedicine.org/health/conditions-and-diseases/alpha-thalassemia
Do you know how many genes your daughter is missing? Since it’s inherited, does anyone else in the family share this condition?

You mentioned you found research regarding blood type changes and that it can mean a serious underlying condition. I haven’t found any mention of blood types changing without a transplant. I’d really love to read about this too! Would you be willing to share the link with me?

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Hi Lori,
Thank you for your reply. The blood type change my daughter had has been verified by two different hematologists. She never had any transplant. It is indeed rare and scary. Even just a basic Google search shows it. But there are also a few studies about it as well.
I’ve included my daughters genetic result for her blood disorder.
Interestingly her blood type was also B+ and changed to O+.
We are just beginning to understand the blood disorders in the family. My husband and brother have G6PD. My son has something strange too. My niece just developed leukemia out of nowhere. So I really want answers.
I’m hoping a flow cytometry test will reveal it all. Do you know how comprehensive this test is?

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@loricehoward

Hi Lori,
Thank you for your reply. The blood type change my daughter had has been verified by two different hematologists. She never had any transplant. It is indeed rare and scary. Even just a basic Google search shows it. But there are also a few studies about it as well.
I’ve included my daughters genetic result for her blood disorder.
Interestingly her blood type was also B+ and changed to O+.
We are just beginning to understand the blood disorders in the family. My husband and brother have G6PD. My son has something strange too. My niece just developed leukemia out of nowhere. So I really want answers.
I’m hoping a flow cytometry test will reveal it all. Do you know how comprehensive this test is?

Jump to this post

Hi @loricehoward, please note that I removed your daughter's testing results as they contained personal identifying information. To protect patient privacy, you can upload them after removing information like patient name, contact, medical number, hospital, etc.

I can understanding your need for answers. It sounds like you are working with a genetics department and genetic counsellor. Are other members of your family also getting genetic testing?

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@loricehoward

Hi Lori,
Thank you for your reply. The blood type change my daughter had has been verified by two different hematologists. She never had any transplant. It is indeed rare and scary. Even just a basic Google search shows it. But there are also a few studies about it as well.
I’ve included my daughters genetic result for her blood disorder.
Interestingly her blood type was also B+ and changed to O+.
We are just beginning to understand the blood disorders in the family. My husband and brother have G6PD. My son has something strange too. My niece just developed leukemia out of nowhere. So I really want answers.
I’m hoping a flow cytometry test will reveal it all. Do you know how comprehensive this test is?

Jump to this post

Wow, this is really interesting. I’d never seen anything to indicate blood types can change besides having a bone marrow transplant. Thank you for sharing the article mention. I finally found a related article from the National Institute of Health relating to cases of patients where Blood group changed during their involvement with AML (acute myeloid leukemia). Not sure how I missed this one!
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5242122/

I can understand your concern for wanting further testing to see if there’s anything more to your daughter’s condition. If she hasn’t had a bone marrow biopsy with the cytology report, that would be a good place to start. I’m not sure the age of your daughter but if she’s given the option for sedation it would make the experience more comfortable for her.

I’m sorry to hear that your niece has leukemia. Do you know which type? I had leukemia too and know the challenges so I wish her well as she goes through her treatments. Those treatments can be tough but they are also life savers.

Since Alpha Thalassemia is genetic and you’re all just learning about blood disorders in your husband’s side of the family tree, has your son been tested?

What types of symptoms does your daughter have with her condition, if you don’t mind my asking. Does your son have similar symptoms?

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@colleenyoung

Hi @loricehoward, please note that I removed your daughter's testing results as they contained personal identifying information. To protect patient privacy, you can upload them after removing information like patient name, contact, medical number, hospital, etc.

I can understanding your need for answers. It sounds like you are working with a genetics department and genetic counsellor. Are other members of your family also getting genetic testing?

Jump to this post

I understand and thank you for removing it.
I’m unsure where to begin with the genetic testing. I was hoping I could get some advice of specific tests that would be helpful.

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@loricehoward

I understand and thank you for removing it.
I’m unsure where to begin with the genetic testing. I was hoping I could get some advice of specific tests that would be helpful.

Jump to this post

Here's more information about genetic testing and care at Mayo Clinic
https://www.mayoclinic.org/tests-procedures/genetic-testing/about/pac-20384827
https://www.mayoclinic.org/tests-procedures/genetic-testing/care-at-mayo-clinic/pcc-20384829

You can also use this website to find a genetic counselor in the US from the National Society of Genetic Counselors (NSGC):
https://findageneticcounselor.nsgc.org/

I hope this helps provide a starting point for getting answers.

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Thank you for this information.

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