I have MDs with hg levels between 9.0 & 11. When doing any activity I lose energy quickly, my heart speeds up & I feel air hungry, like not enough oxygen. I have to stop, sit down and recover for a minute. My hemotologist says I shouldn’t feel this with my hug levels sniff it must be something else. I think I just use more oxygen than others. Anybody else have this ?
@shoch1957 I experienced the same thing, especially when HG was in the 9s and dropping. I did not appreciate being told it was something else. I had fatigue early on. It was one of my first symptoms. I was told I should not feel that either. Eventually, I had my heart checked and a pulmonary function test. The anemia caused the racing heart. Since I was symptomatic, my transfusion point was set at 8 instead of 7.
@shoch1957 I experienced the same thing, especially when HG was in the 9s and dropping. I did not appreciate being told it was something else. I had fatigue early on. It was one of my first symptoms. I was told I should not feel that either. Eventually, I had my heart checked and a pulmonary function test. The anemia caused the racing heart. Since I was symptomatic, my transfusion point was set at 8 instead of 7.
I have MDs with hg levels between 9.0 & 11. When doing any activity I lose energy quickly, my heart speeds up & I feel air hungry, like not enough oxygen. I have to stop, sit down and recover for a minute. My hemotologist says I shouldn’t feel this with my hug levels sniff it must be something else. I think I just use more oxygen than others. Anybody else have this ?
What really is aggravating is the comment “you’re the only one who feels like this “ but by the reactions above, I’m not. Why the lack of information to our hematologist?
I have MDs with hg levels between 9.0 & 11. When doing any activity I lose energy quickly, my heart speeds up & I feel air hungry, like not enough oxygen. I have to stop, sit down and recover for a minute. My hemotologist says I shouldn’t feel this with my hug levels sniff it must be something else. I think I just use more oxygen than others. Anybody else have this ?
I also feel just like this when my Hb dips below 8.5-9. The haematologist genuinely seemed a bit surprised when I first commented on it when my Hb first started falling to this level. She also said that age and general health affects how symptoms are experienced. I'm a 56 yr old female. I especially struggle when extra weight bearing or inclines are involved eg lawn mowing. Six years in and I'm now transfusion dependent, so my Hb often reaches low 7s which is a whole other kettle of fish 😬 I feel as though I've become an expert at knowing my own Hb level, based on the symptoms. You know your own body, regardless of what others say you should or shouldn't be experiencing....I wish you all the best.
I have MDs with hg levels between 9.0 & 11. When doing any activity I lose energy quickly, my heart speeds up & I feel air hungry, like not enough oxygen. I have to stop, sit down and recover for a minute. My hemotologist says I shouldn’t feel this with my hug levels sniff it must be something else. I think I just use more oxygen than others. Anybody else have this ?
Thanks for that reply. My symptoms too are much worse carrying weight or walking inclines but my hg levels can be as high as 10.5 and I still feel this way.
Thanks for that reply. My symptoms too are much worse carrying weight or walking inclines but my hg levels can be as high as 10.5 and I still feel this way.
@shoch1957 Normal Hgb for males is between 13 and 15 deciliter (g/dL). If your levels hover between 9 and 10.5 that’s considered mild anemia and certainly enough of a change in the amount of red blood cells carrying oxygen around your body to make a difference. Your doctor may not think this change is enough to have you feeling the side effects such as getting winded under load, but those of us who have experienced it, beg to differ. It’s similar to hiking at high altitudes. From my own experience (as a female) that was enough for me to start feeling something was off!
Moderate anemia (8 to 10 g/dL will have more pronounce symptoms such as looking pale, headaches, fatigue, shortness of breath, and heart palpations.
There’s not much that can be done at this point. Blood transfusions help but are generally only given somewhere below 8.
Has your doctor discussed a treatment plan for your MDS?
@shoch1957 Normal Hgb for males is between 13 and 15 deciliter (g/dL). If your levels hover between 9 and 10.5 that’s considered mild anemia and certainly enough of a change in the amount of red blood cells carrying oxygen around your body to make a difference. Your doctor may not think this change is enough to have you feeling the side effects such as getting winded under load, but those of us who have experienced it, beg to differ. It’s similar to hiking at high altitudes. From my own experience (as a female) that was enough for me to start feeling something was off!
Moderate anemia (8 to 10 g/dL will have more pronounce symptoms such as looking pale, headaches, fatigue, shortness of breath, and heart palpations.
There’s not much that can be done at this point. Blood transfusions help but are generally only given somewhere below 8.
Has your doctor discussed a treatment plan for your MDS?
@loribmt
Currently receiving luspatercept injections every 3 weeks. It seems to me that the injections cause my hg to go up & down like a yoyo with me being symptomatic at most levels. They won’t give the injections if I’m over 10.5 so up & down.
I have MDs with hg levels between 9.0 & 11. When doing any activity I lose energy quickly, my heart speeds up & I feel air hungry, like not enough oxygen. I have to stop, sit down and recover for a minute. My hemotologist says I shouldn’t feel this with my hug levels sniff it must be something else. I think I just use more oxygen than others. Anybody else have this ?
What really is aggravating is the comment “you’re the only one who feels like this “ but by the reactions above, I’m not. Why the lack of information to our hematologist?
@shoch1957 I hear you. It's kind of like what came first, the chicken or the egg! MDS causes anemia which in turn causes these symptoms. The clinician probably identifies divisions in anemia: mild, moderate, severe where specific symptoms are "expected." Also, dysplastic cells are not good at carrying oxygen which leads to some of your symptoms. I would tell the Dr that those are your symptoms and that you don't appreciate the fact he/she is not acknowledging them. Otherwise, are you satisfied with your care?
@loribmt
Currently receiving luspatercept injections every 3 weeks. It seems to me that the injections cause my hg to go up & down like a yoyo with me being symptomatic at most levels. They won’t give the injections if I’m over 10.5 so up & down.
@shoch1957 Myelodyplastic syndromes, or MDS are a group of blood disorders where the blood-forming cells in the bone marrow become abnormal, resulting in the marrow not making enough healthy new blood cells. This leads to low levels of one or more types of blood cells.
In your case it appears to be your red blood cells not keeping up the pace. They may defective, not be able to mature properly so they die off faster than usual, or not being produced in the numbers to maintain a normal level. This can cause anemia in MDS patients. Which you’re experiencing.
There are medications that can help with anemia such as growth factor drugs which promote red blood cell development. There are also drugs, such as Luspatercept, that help stimulate blood cells to mature which can reduce the need for frequent blood transfusions. So by taking that medication, more of your red blood cells may reach maturity. The life spans of the cells may vary causing the yo-yo in results and they may not all be healthy, effective cells. But because your hemoglobin remains consistently below what’s considered the normal range for a male (13-15 g/dL), those symptoms of anemia, being breathless and fatigued are also going to linger.
Not everyone will experience the same degree of symptoms with mild to medium anemia. For some of us, like you and myself, we may become aware much earlier of our lack of breath, (being air hungry) and heart racing at reduced hgb levels than others with the same numbers.
It’s certainly not helpful to have your doctor telling you that you’re the only one feeling this! Obviously, that’s not so. Many of us have gone through the same thing!
Wishing you continued success with the Luspatercept. I from what I’ve been reading it’s been successful for treating anemia in early treatment for low risk MDS patients!
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@shoch1957 I experienced the same thing, especially when HG was in the 9s and dropping. I did not appreciate being told it was something else. I had fatigue early on. It was one of my first symptoms. I was told I should not feel that either. Eventually, I had my heart checked and a pulmonary function test. The anemia caused the racing heart. Since I was symptomatic, my transfusion point was set at 8 instead of 7.
@janetlen
Interesting. I too had heart & lungs tested to no avail. I don’t understand why we’re being told that this is not a symptom of MDS.
What really is aggravating is the comment “you’re the only one who feels like this “ but by the reactions above, I’m not. Why the lack of information to our hematologist?
I also feel just like this when my Hb dips below 8.5-9. The haematologist genuinely seemed a bit surprised when I first commented on it when my Hb first started falling to this level. She also said that age and general health affects how symptoms are experienced. I'm a 56 yr old female. I especially struggle when extra weight bearing or inclines are involved eg lawn mowing. Six years in and I'm now transfusion dependent, so my Hb often reaches low 7s which is a whole other kettle of fish 😬 I feel as though I've become an expert at knowing my own Hb level, based on the symptoms. You know your own body, regardless of what others say you should or shouldn't be experiencing....I wish you all the best.
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3 ReactionsThanks for that reply. My symptoms too are much worse carrying weight or walking inclines but my hg levels can be as high as 10.5 and I still feel this way.
@shoch1957 Normal Hgb for males is between 13 and 15 deciliter (g/dL). If your levels hover between 9 and 10.5 that’s considered mild anemia and certainly enough of a change in the amount of red blood cells carrying oxygen around your body to make a difference. Your doctor may not think this change is enough to have you feeling the side effects such as getting winded under load, but those of us who have experienced it, beg to differ. It’s similar to hiking at high altitudes. From my own experience (as a female) that was enough for me to start feeling something was off!
Moderate anemia (8 to 10 g/dL will have more pronounce symptoms such as looking pale, headaches, fatigue, shortness of breath, and heart palpations.
There’s not much that can be done at this point. Blood transfusions help but are generally only given somewhere below 8.
Has your doctor discussed a treatment plan for your MDS?
@loribmt
Currently receiving luspatercept injections every 3 weeks. It seems to me that the injections cause my hg to go up & down like a yoyo with me being symptomatic at most levels. They won’t give the injections if I’m over 10.5 so up & down.
I am 80 years old and have hemoglobin levels between 7.0 to 8.5 with transfusions every 3-4 weeks for 5q.
I have gone lower than 7.0 on a few occasions.
Revlimid did not work in my case.
I am tired but at your hemoglobin levels I would think you would not be so affected.
To me a hemoglobin of 9 or above would be my objective for a fuller life.
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6 Reactions@shoch1957 I hear you. It's kind of like what came first, the chicken or the egg! MDS causes anemia which in turn causes these symptoms. The clinician probably identifies divisions in anemia: mild, moderate, severe where specific symptoms are "expected." Also, dysplastic cells are not good at carrying oxygen which leads to some of your symptoms. I would tell the Dr that those are your symptoms and that you don't appreciate the fact he/she is not acknowledging them. Otherwise, are you satisfied with your care?
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1 Reaction@shoch1957 Myelodyplastic syndromes, or MDS are a group of blood disorders where the blood-forming cells in the bone marrow become abnormal, resulting in the marrow not making enough healthy new blood cells. This leads to low levels of one or more types of blood cells.
In your case it appears to be your red blood cells not keeping up the pace. They may defective, not be able to mature properly so they die off faster than usual, or not being produced in the numbers to maintain a normal level. This can cause anemia in MDS patients. Which you’re experiencing.
There are medications that can help with anemia such as growth factor drugs which promote red blood cell development. There are also drugs, such as Luspatercept, that help stimulate blood cells to mature which can reduce the need for frequent blood transfusions. So by taking that medication, more of your red blood cells may reach maturity. The life spans of the cells may vary causing the yo-yo in results and they may not all be healthy, effective cells. But because your hemoglobin remains consistently below what’s considered the normal range for a male (13-15 g/dL), those symptoms of anemia, being breathless and fatigued are also going to linger.
Not everyone will experience the same degree of symptoms with mild to medium anemia. For some of us, like you and myself, we may become aware much earlier of our lack of breath, (being air hungry) and heart racing at reduced hgb levels than others with the same numbers.
It’s certainly not helpful to have your doctor telling you that you’re the only one feeling this! Obviously, that’s not so. Many of us have gone through the same thing!
Wishing you continued success with the Luspatercept. I from what I’ve been reading it’s been successful for treating anemia in early treatment for low risk MDS patients!
Have a lovely holiday season!
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