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Old Tue Mar 14, 2017, 02:16 PM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
Well you certainly do have symptoms due to low HGB. And even though transfusions are not a curative treatment, they are a vital part of the overall care. You will feel like a new person when your HGB is higher.

You may want to consider another local hematologist to provide your immediate supportive care if you are not confident in the one you are seeing now. Even if a doctor is unfamiliar with SAA, there is nothing stopping them from consulting with the NIH which has treated many with SAA. They would be a good resource for any doctor. You may want to pursue going the NIH for a consult. I'm surprised that it will take a month to get you in to see someone.

Some other things to consider while you wait:

Nutritional issues - B12, Folate, Iron, copper, zinc and vitamin D are heavy hitters. You should have all checked. Even though your doctor said your B12 was normal, many consider a low-normal okay. But more recent thinking says a B12 serum should be at around 500. A better indication of B12 deficiency/insuffiency is to check your MMA and homocystiene levels. Your GP can order the nutritional test.

Digestive issues - If you are on an acid reflux drug, this can prevent your body from absorbing nutrients. Also, h.pylori bacteria has been implicated in BM diseases. This the bacteria that causes ulcers. You can get screened for that. Your GP can check it for you. Celiac disease or gluten sensitivities can cause anemia too.

Bleeding issues: I assume your doctor ruled out any bleeding issues. Easily checked with a urine and stool test to check for blood.

Medications: Meds can cause BM suppression so check all meds, if any, that you are on. Statins can impact it.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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