[Greg H]

Hey Vicki!

Welcome! I'm not a doc, just a guy with MDS, but your fatigue use sounds like you have something going on. It looks like all of your counts, except for your platelets, are kind of marginally below normal. I think a lot of MDS folks start out with those kinds of counts, if they are regularly seeing a doctor and having CBCs. Those who aren't sometimes don't get any indication until their counts go low enough to cause a problem.

You are definitely right that fatigue is a part of the disease that's not absolutely dependent on Hgb levels, and the researchers tend to blame cytokines. It's also true that sensitivity to hemoglobin levels is highly individualized. Some folks can have a 12 and no energy at all. On the other hand, the nurses at my treatment center told me about one elderly female patient who will start feeling a bit tired, drive herself to the hospital, and wind up having an HGB of 3! (I would be flat out with a 3.) Can you scare up any CBCs from several years ago and see where your Hgb was then? That might give you some idea of what your body is expecting.

I would expect your hematologist is going to recommend a bone marrow biopsy, which is the only way to figure out what's going on in your marrow.

Given all you have been through, I can certainly understand why you might not be anxious for more treatment. But some types of MDS can go safely untreated for years, while others are only going to get worse if left alone. So it would be good to find out what's going on in your marrow -- and, in particular -- which, if any, chromosomal abnormalities you have.

You mentioned iron, and, of course, your Hematologist will want to look at that, plus B12, Folate, copper, zinc, and some other stuff. (You aren't taking megadoses of zinc are you?)

Welcome to the forum!

Greg