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.

@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.

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.

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.

Thank you for your quick reply .
May we know what type of MDS you have ?
Since Vidaza is starting to not work after 19 cycles , his doctor suggested him to get his 3rd bone marrow biopsy to see what's going on to confirm new diagnosis .
I have heard some patients use Vidaza plus another drug to make Vidaza to work better .
I have heard of patients go for clinical trials .
All very scary and sounds disappointing after being on Vidaza and doing so well .
If you know of something that can be helpful for us , please share !
God bless you all and have a blessed holiday ......

I have MDS SF3B1 and my Hgb currently is 9.9 and I have those same symptoms. I have opted not to take any EPO meds at this time. I also have iron overload although I have NOT had any transfusions.