Hi @berbatti Is this a recent diagnosis for you? Thalasemia is an inherited blood disorder. I found some information on the Mayo Clinic website regarding Thalasemia which you may find useful in explaining your condition. https://www.mayoclinic.org/diseases-conditions/thalassemia/symptoms-causes/syc-20354995
Here’s an excerpt from the article about the potential for too much iron for people with Thalasemia.
“People with thalassemia can get too much iron in their bodies, either from the disease or from frequent blood transfusions. Too much iron can result in damage to your heart, liver and endocrine system, which includes hormone-producing glands that regulate processes throughout your body.”
Have you required any blood transfusions? May I ask why your doctor feels you need an iron infusion? Do recent blood test results indicate that your iron level is low?
Hi @berbatti Is this a recent diagnosis for you? Thalasemia is an inherited blood disorder. I found some information on the Mayo Clinic website regarding Thalasemia which you may find useful in explaining your condition. https://www.mayoclinic.org/diseases-conditions/thalassemia/symptoms-causes/syc-20354995
Here’s an excerpt from the article about the potential for too much iron for people with Thalasemia.
“People with thalassemia can get too much iron in their bodies, either from the disease or from frequent blood transfusions. Too much iron can result in damage to your heart, liver and endocrine system, which includes hormone-producing glands that regulate processes throughout your body.”
Have you required any blood transfusions? May I ask why your doctor feels you need an iron infusion? Do recent blood test results indicate that your iron level is low?
Hello; Thanks for your response. I did see the info on the web site, but it does not answer my question. I'd like to know if anyone else has ever had an iron infusion.
Yes, I have had a couple of blood transfusions in the past few years. More recently my hemoglobin levers are down below 8.
Thanks again
Hello; Thanks for your response. I did see the info on the web site, but it does not answer my question. I'd like to know if anyone else has ever had an iron infusion.
Yes, I have had a couple of blood transfusions in the past few years. More recently my hemoglobin levers are down below 8.
Thanks again
You can still have low hemoglobin levels and still have a high iron content in your blood. So before you have an iron infusion you need to know your ferritin level. Has your ferritin level been checked?
You can still have low hemoglobin levels and still have a high iron content in your blood. So before you have an iron infusion you need to know your ferritin level. Has your ferritin level been checked?
Hello again. I just got a reply from my doctor regarding my iron levels. They are very low. The doctor is very aware of "overload" possibilities, but says, not in my case. Probably will go ahead with infusion.
@antonieta71 Hey, I’m glad you found Mayo Connect! We’re not doctors here so we can’t diagnose your problem. From what I’ve read, it is a genetic condition, not an autoimmune disease. Did your doctor refer you to a specialist who can diagnose you more in depth? Here is a link that can provide more information: https://www.mayoclinic.org/diseases-conditions/thalassemia/symptoms-causes/syc-20354995
Did your doctor start you on any treatment?
Hello. I'm new to your group and new to this diagnosis. I also have Thalassemia, which for the most part has been insignificant as far as difficult symptoms to deal with. Iron, however is not something that is beneficial for I was told many years ago when diagnosed with. Can anyone please tell me how or what I should expect with having Polycythemia & perhaps needing iron because of treatments for it? I appreciate any input or experiences you may have had.
Thank you,
Kat
Hello. I'm new to your group and new to this diagnosis. I also have Thalassemia, which for the most part has been insignificant as far as difficult symptoms to deal with. Iron, however is not something that is beneficial for I was told many years ago when diagnosed with. Can anyone please tell me how or what I should expect with having Polycythemia & perhaps needing iron because of treatments for it? I appreciate any input or experiences you may have had.
Thank you,
Kat
Good morning @colleenyoung. Thank you for your response and time. I'll take a look at this information and these discussions today. I certainly appreciate your input and experience. You've been very helpful, it's reassuring to know there's a place to go to find shared personal experiences.
Have a good day. @kat101
Hi
I am in the same situation with regards to needing an iron infusion due to my very low levels. I was just wondering if you went through with it and how it went?
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Hi @berbatti Is this a recent diagnosis for you? Thalasemia is an inherited blood disorder. I found some information on the Mayo Clinic website regarding Thalasemia which you may find useful in explaining your condition.
https://www.mayoclinic.org/diseases-conditions/thalassemia/symptoms-causes/syc-20354995
Here’s an excerpt from the article about the potential for too much iron for people with Thalasemia.
“People with thalassemia can get too much iron in their bodies, either from the disease or from frequent blood transfusions. Too much iron can result in damage to your heart, liver and endocrine system, which includes hormone-producing glands that regulate processes throughout your body.”
Have you required any blood transfusions? May I ask why your doctor feels you need an iron infusion? Do recent blood test results indicate that your iron level is low?
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2 ReactionsHello; Thanks for your response. I did see the info on the web site, but it does not answer my question. I'd like to know if anyone else has ever had an iron infusion.
Yes, I have had a couple of blood transfusions in the past few years. More recently my hemoglobin levers are down below 8.
Thanks again
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Helpful -
Hug
1 ReactionYou can still have low hemoglobin levels and still have a high iron content in your blood. So before you have an iron infusion you need to know your ferritin level. Has your ferritin level been checked?
Hello again. I just got a reply from my doctor regarding my iron levels. They are very low. The doctor is very aware of "overload" possibilities, but says, not in my case. Probably will go ahead with infusion.
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1 ReactionMy lab results
HgbA1 57.2
HgbA2 4.1
Hgb F 0.8
Hgb S 38.7
Do I have Thalassemia or the trait? Alpha or Beta? My doc was not clear thanks
@antonieta71 Hey, I’m glad you found Mayo Connect! We’re not doctors here so we can’t diagnose your problem. From what I’ve read, it is a genetic condition, not an autoimmune disease. Did your doctor refer you to a specialist who can diagnose you more in depth? Here is a link that can provide more information:
https://www.mayoclinic.org/diseases-conditions/thalassemia/symptoms-causes/syc-20354995
Did your doctor start you on any treatment?
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Hug
4 ReactionsHello. I'm new to your group and new to this diagnosis. I also have Thalassemia, which for the most part has been insignificant as far as difficult symptoms to deal with. Iron, however is not something that is beneficial for I was told many years ago when diagnosed with. Can anyone please tell me how or what I should expect with having Polycythemia & perhaps needing iron because of treatments for it? I appreciate any input or experiences you may have had.
Thank you,
Kat
Hi @kat101, it is a challenge managing multiple chronic conditisions. I'm tagging fellow members like @lwengel @slk2421 @rekstrom @kientzy @pamdg @buckaroobanzai @pamdg, who have experience with polycythemia and may have some thoughts to share with you.
You may also be interested in these related discussions:
- Polycythemia: Are you asymptomatic? https://connect.mayoclinic.org/discussion/polycythemia/
- Weak After Phlebotomy to Treat Polycythemia: How to Improve Recovery? https://connect.mayoclinic.org/discussion/weak-after-phlebotomy/
Has iron infusion been suggested as a treatment for you?
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5 ReactionsGood morning @colleenyoung. Thank you for your response and time. I'll take a look at this information and these discussions today. I certainly appreciate your input and experience. You've been very helpful, it's reassuring to know there's a place to go to find shared personal experiences.
Have a good day.
@kat101
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1 ReactionHi
I am in the same situation with regards to needing an iron infusion due to my very low levels. I was just wondering if you went through with it and how it went?
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1 Reaction