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Old Fri Mar 22, 2019, 02:35 PM
Barbara K Barbara K is offline
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Join Date: Oct 2012
Location: USA
Posts: 37
Hi, Kubu,

Welcome and sorry you are here. I don't check the forums often and just happened to see your post today.

Previously, btw, I posted as Barbara K, but I couldn't manage to log on or do a password reset, so I just set up a new account.

I wanted to tell you that my spouse had a somewhat similar story. He went to give blood in fall 2011 (a very fit and health-aware age 48) and was turned away due to low hematocrit (around 32 maybe?). Trip to the doctor turned up pancytopenia. Hemoglobin around 10; platelets about 120-130?; white cells about 2; ANC maybe around .9 or 1. So mild, relatively speaking. BMB gave about 20-25% cellularity. His iron stores were very low, but they said that wouldn't explain the platelet and white cell counts. They gave diagnosis of suspected mild aplastic anemia. Iron supplementation made him less anemic but didn't bring his red cells up to normal and had no impact on white cell counts or platelets. They also on some tests said he had hypogammaglobulenemia, but then he was also listed as having monoclonal gammopathy of IGM. I mean, for a while it was dizzying, and I was in a panic.

Here we are several years later, and the situation is pretty much the same. His hematocrit is usually in the upper 30s and hemoglobin around 3.8. Platelets usually around 120-130; white blood cells around 2 and ANC around 1, esp. if they test in afternoon; if he goes in the morning his white cells and ANC are usually a bit lower. ANC has never gone below .6 I don't think. His numbers never ever go up noticeably, though. I'd be shocked at this point if he had a test that showed a white count of even 3 or 4. What does change is that his level of IGM is steadily going up, so that could perhaps be an early sign of impending Waldenstrom's Macroglobulenimia. (I'm sure i'm spelling that wrong.) Maybe he doesn't have mild AA at all but instead his body is producing limited blood to keep the monoclonal IGM antibody in check? If it is smoldering WM, he has quite a few years to go before he would reach levels requiring treatment. I mean, a lot of years unless it suddenly ramps up fast. Meanwhile, he has to take about 70 mg of iron a day just to keep his ferritin from tanking, so something is weird about his iron storage. But he did not test positive for celiac disease, so that doesn't seem to be a cause.

I guess my message is don't assume you are headed straight for a crash. And I would think that is very good news that your white counts went back up. It shows your marrow is capable of producing them. I wouldn't over-worry the BMB results, as others recommend. I think those can vary a lot depending on where they stick the needle.

Hang in there. There are no guarantees in life, but it might not turn out to be so dire. It was good they caught my husband's problem b/c he does feel better taking the iron (he had a lot of fatigue when his hematocrit was in the low-30s), but otherwise had he not gone to give blood I think even to this day we would have no idea that his blood work is not normal. He gets sick a bit more than me, but it's nothing major, nothing that would have registered as unusual.

Oh--and I almost forgot: he has developed a problem with tension headaches that he hasn't been able to resolve. That has come about since his diagnosis. We assume it is unrelated but I thought I'd mention it. They hit about once a month and last always three days.

take care, barbara
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