MDS and anemia

Hi, is it really MDS?
MDS and anemia are closely linked.

Your age could be important.
"Elevated hCG can be a benign finding in perimenopausal and postmenopausal women"
https://www.ccjm.org/content/88/11/635.

That is interesting. How long ago were diagnosed with MDS? I have found if you enter MDS in the subject box above many, many posts will come up. Also, the knowledgeable monitors will post info most often. You have already received one link to review.
I was diagnosed with MDS within a year of breast cancer treatment. I must say I did not know with some changes what came from what. Fatigue i had. Shortness of breath no. I am just one person, so others may have had this symptom.

@katgob
I guess I should’ve mentioned also that I am a male. I was diagnosed 4 years ago. My symptoms have always stayed about the same with some days better than others. I am currently receiving REBLOZYL injections every 3 weeks.

@shoch1957 You described exactly how I feel every day.

@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.

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?