@slynn. Thanks for your reply. I read through it once but will reread again. That's is a lot to comprehend. My ferritin results last week was 25.5 ng/mL--normal is between 10.0-200.0 ng/mL.
@ritapearl...I have had anemia since my MAC infection in 2013. While the MAC is in remission, the anemia continues as well as very low PTH (parathyroid hormone) which likely developed after all the prednisone treatments (according to my doctor of Chinese medicine). My pulmonologist has always said, "the MAC won't kill you, but the steroids will" Luckily, I've kept my lungs mostly clear with daily drainage and nebulizer treatments and so far avoided more oral steroids.
Hi! I just wanted to say that I am currently being worked up for MAC and my PTH is low with high calcium, high platelets, high WBCs, and low ferritin. I have not been on any steroid treatments, so there's a possibility that yours could have just been from the MAC. . .
In response to ritapearl, I have MAC and bronchiectisis. I kept saying that my RBCs, hemoglobin, and hematacrit was low, so I was tested for low ferritin, PROTEIN ELECTROPHORESIS SERUM, & IRON AND TIBC, SERUM ( I copied those from my chart) Long story short, I had wondered the same thing if my anemia was caused by the Mac and bronchitis. I asked for an iron infusion and that made a big difference. I hope that you will get the help you need.
My red blood cells have been low a number of times. Once was while on long-term antibiotic therapy. Another was while I had heavy metal poisoning. But except after hip replacement surgeries, my hemoglobin has always been fine.
I drew a (layperson) conclusion that there seemed to be a relationship between high white blood or lymphocyte counts and low red counts. I might be totally off base...
Sue
Sue
Found this thread after finding and seeing my most recent blood test results and then having gone on line to search and search information about the test results. I have not at any time previously had so many, if any, areas out of 'whack'. I also pulled up my previous blood tests to compare, tests that were done within the same year period.
Well now I know, strong indication anemia/iron...iron hidden or not hidden etc. per the test results.
Venting out: I am so disappointed that the doctor did not review the blood tests results with me to inform me of what showed and what it meant. Why she did not tell me what was showing etc. etc. or tell me the positive with the negatives of the blood test and CScan is frustrating. Outcome: She just said: "I want you to start the antibiotics".
What makes this so difficult is that I have not had to deal with a chronic health condition until this diagnosis two years ago and there is so much to understand in terms of the disease, such as being on top of things when seeing the doctor with prepared questions you had prepared for the visit and being able to think of questions that you must think of on the spot due to the new information given to you by the doctor during the office visit or not being fully told.
This anemia/iron information certainly is something to be aware of on this journey and something to consider with the why or why not of starting the antibiotics.
I don't have any outward symptoms of iron or anemia deficiency symptoms from what I can tell and read about, at this time.
QUESTION SUE --- I guess this (iron/anemia) will be an ongoing concern with the ups and downs with BE????? It appears from the posts it is something one can expect to experience???? Do you know??? Do you know anything more since Jan 2023 about this iron/anemia/BE connection????
Barbara
Sue
Found this thread after finding and seeing my most recent blood test results and then having gone on line to search and search information about the test results. I have not at any time previously had so many, if any, areas out of 'whack'. I also pulled up my previous blood tests to compare, tests that were done within the same year period.
Well now I know, strong indication anemia/iron...iron hidden or not hidden etc. per the test results.
Venting out: I am so disappointed that the doctor did not review the blood tests results with me to inform me of what showed and what it meant. Why she did not tell me what was showing etc. etc. or tell me the positive with the negatives of the blood test and CScan is frustrating. Outcome: She just said: "I want you to start the antibiotics".
What makes this so difficult is that I have not had to deal with a chronic health condition until this diagnosis two years ago and there is so much to understand in terms of the disease, such as being on top of things when seeing the doctor with prepared questions you had prepared for the visit and being able to think of questions that you must think of on the spot due to the new information given to you by the doctor during the office visit or not being fully told.
This anemia/iron information certainly is something to be aware of on this journey and something to consider with the why or why not of starting the antibiotics.
I don't have any outward symptoms of iron or anemia deficiency symptoms from what I can tell and read about, at this time.
QUESTION SUE --- I guess this (iron/anemia) will be an ongoing concern with the ups and downs with BE????? It appears from the posts it is something one can expect to experience???? Do you know??? Do you know anything more since Jan 2023 about this iron/anemia/BE connection????
Barbara
Active infection, which you have had for a long time now, can cause many changes in your bloodwork. So can some supplements and medications. I'm not knowledgeable enough to try to interpret this, so I just ask my doctor.
Can you send a message through your patient portal asking for an explanation of what concerns you?
Active infection, which you have had for a long time now, can cause many changes in your bloodwork. So can some supplements and medications. I'm not knowledgeable enough to try to interpret this, so I just ask my doctor.
Can you send a message through your patient portal asking for an explanation of what concerns you?
Thanks Sue.
At first after reading the blood test I immediately thought what in my supplements could have caused this. But, then after reading all I read and having taken supplements all my life and not being on any medications I think it's more the MAI/MAC that has brought the change about.
Yes, I had messaged the doctor, I won't be able to expect a reply until the end of January due to the doctors overall schedule, per the response I received from the very reliable nurse.
Barbara
Search up MAC and low iron/anemia. I don’t recall the site but did read about the body’s defense mechanism towards MAC. MAC thrives on iron and the body’s mechanism is to lower iron stores . If anyone else has more information on this, please share. I did have an iron infusion months ago and now am wondering if perhaps I should not have.
Hi Barbara -
I know this is all so frustrating. At the time of my diagnosis, I turned out to be suffering from low iron, which I never had in my life. I also read that MAC thrives on iron, and I tried to do more research on it but I couldn’t find much at all. I believe the MAC infection was the cause of iron deficiency. I was experiencing a kind of dizziness/vertigo every night. I thought maybe I had an inner ear infection from Covid, but the ENT found nothing and suggested I see a neurologist and have a brain work up!. My hunch, supported by my research, was that it was the iron deficiency, so I decided to wait and see how I felt after being on it for a couple of months. It made all the difference in the world! I now check it from time to time to make sure I’m still good and that MAC hasn’t depleted me once again. I can’t imagine that getting the infusion was bad for you if you needed to replenish your stores, but of course I do not have the expertise to say. I liken my body now to an older car (not that I’m so old - I’m only 61). You can get away with things like not checking your oil or using a so-so mechanic who only knows the basics with a new car in top condition, but with older cars, one really needs a skilled mechanic who understands the inner-workings of all the bits that make the engine go. I think the same is true for our bodies, but not many doctors have or will take the time to look at the overall organism with an eye toward maintaining the delicate balance between all the moving parts. It’s frustrating for sure - thank God for the Internet and our ability to research so much on our own and advocate for ourselves. And of course thank God and Mayo Clinic for this forum. Can you imagine if we didn’t have these???
Hang in there, Barbara!
Search up MAC and low iron/anemia. I don’t recall the site but did read about the body’s defense mechanism towards MAC. MAC thrives on iron and the body’s mechanism is to lower iron stores . If anyone else has more information on this, please share. I did have an iron infusion months ago and now am wondering if perhaps I should not have.
My pulmonologist (specializes) once told me that Pseudomonas binds to iron. I am still not sure what the implications of that are but he did say if I ever needed to take iron I could but only if I needed it and that an iron infusion could be dangerous or risky.
My pulmonologist (specializes) once told me that Pseudomonas binds to iron. I am still not sure what the implications of that are but he did say if I ever needed to take iron I could but only if I needed it and that an iron infusion could be dangerous or risky.
Pseudomonas binds to iron. I know you are all too familiar with Pseudomonas. To date, as of yet, that has not been found in my sputum. With my next visit with the doctor my question will be about iron etc. with MAC since she did not contact me after the blood test results were showing poor results such as a problem that can be associated with iron.
Barbara
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Hi! I just wanted to say that I am currently being worked up for MAC and my PTH is low with high calcium, high platelets, high WBCs, and low ferritin. I have not been on any steroid treatments, so there's a possibility that yours could have just been from the MAC. . .
In response to ritapearl, I have MAC and bronchiectisis. I kept saying that my RBCs, hemoglobin, and hematacrit was low, so I was tested for low ferritin, PROTEIN ELECTROPHORESIS SERUM, & IRON AND TIBC, SERUM ( I copied those from my chart) Long story short, I had wondered the same thing if my anemia was caused by the Mac and bronchitis. I asked for an iron infusion and that made a big difference. I hope that you will get the help you need.
Sue
Found this thread after finding and seeing my most recent blood test results and then having gone on line to search and search information about the test results. I have not at any time previously had so many, if any, areas out of 'whack'. I also pulled up my previous blood tests to compare, tests that were done within the same year period.
Well now I know, strong indication anemia/iron...iron hidden or not hidden etc. per the test results.
Venting out: I am so disappointed that the doctor did not review the blood tests results with me to inform me of what showed and what it meant. Why she did not tell me what was showing etc. etc. or tell me the positive with the negatives of the blood test and CScan is frustrating. Outcome: She just said: "I want you to start the antibiotics".
What makes this so difficult is that I have not had to deal with a chronic health condition until this diagnosis two years ago and there is so much to understand in terms of the disease, such as being on top of things when seeing the doctor with prepared questions you had prepared for the visit and being able to think of questions that you must think of on the spot due to the new information given to you by the doctor during the office visit or not being fully told.
This anemia/iron information certainly is something to be aware of on this journey and something to consider with the why or why not of starting the antibiotics.
I don't have any outward symptoms of iron or anemia deficiency symptoms from what I can tell and read about, at this time.
QUESTION SUE --- I guess this (iron/anemia) will be an ongoing concern with the ups and downs with BE????? It appears from the posts it is something one can expect to experience???? Do you know??? Do you know anything more since Jan 2023 about this iron/anemia/BE connection????
Barbara
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1 ReactionActive infection, which you have had for a long time now, can cause many changes in your bloodwork. So can some supplements and medications. I'm not knowledgeable enough to try to interpret this, so I just ask my doctor.
Can you send a message through your patient portal asking for an explanation of what concerns you?
Thanks Sue.
At first after reading the blood test I immediately thought what in my supplements could have caused this. But, then after reading all I read and having taken supplements all my life and not being on any medications I think it's more the MAI/MAC that has brought the change about.
Yes, I had messaged the doctor, I won't be able to expect a reply until the end of January due to the doctors overall schedule, per the response I received from the very reliable nurse.
Barbara
Search up MAC and low iron/anemia. I don’t recall the site but did read about the body’s defense mechanism towards MAC. MAC thrives on iron and the body’s mechanism is to lower iron stores . If anyone else has more information on this, please share. I did have an iron infusion months ago and now am wondering if perhaps I should not have.
Hi Barbara -
I know this is all so frustrating. At the time of my diagnosis, I turned out to be suffering from low iron, which I never had in my life. I also read that MAC thrives on iron, and I tried to do more research on it but I couldn’t find much at all. I believe the MAC infection was the cause of iron deficiency. I was experiencing a kind of dizziness/vertigo every night. I thought maybe I had an inner ear infection from Covid, but the ENT found nothing and suggested I see a neurologist and have a brain work up!. My hunch, supported by my research, was that it was the iron deficiency, so I decided to wait and see how I felt after being on it for a couple of months. It made all the difference in the world! I now check it from time to time to make sure I’m still good and that MAC hasn’t depleted me once again. I can’t imagine that getting the infusion was bad for you if you needed to replenish your stores, but of course I do not have the expertise to say. I liken my body now to an older car (not that I’m so old - I’m only 61). You can get away with things like not checking your oil or using a so-so mechanic who only knows the basics with a new car in top condition, but with older cars, one really needs a skilled mechanic who understands the inner-workings of all the bits that make the engine go. I think the same is true for our bodies, but not many doctors have or will take the time to look at the overall organism with an eye toward maintaining the delicate balance between all the moving parts. It’s frustrating for sure - thank God for the Internet and our ability to research so much on our own and advocate for ourselves. And of course thank God and Mayo Clinic for this forum. Can you imagine if we didn’t have these???
Hang in there, Barbara!
My pulmonologist (specializes) once told me that Pseudomonas binds to iron. I am still not sure what the implications of that are but he did say if I ever needed to take iron I could but only if I needed it and that an iron infusion could be dangerous or risky.
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Helpful -
Hug
2 ReactionsPseudomonas binds to iron. I know you are all too familiar with Pseudomonas. To date, as of yet, that has not been found in my sputum. With my next visit with the doctor my question will be about iron etc. with MAC since she did not contact me after the blood test results were showing poor results such as a problem that can be associated with iron.
Barbara