IDA with a side of CKD

Nov. 21, 2018

Iron deficiency anemia (IDA) affects an estimated 5 million adults in the U.S.1

I’ve a history of low iron. My anemia bottomed out nine years ago as I sat in my Manhattan apartment with huge bowls of ice in my lap, night after night, eating it as fast as I could consume it. I was suffering from pica, one of the more unusual side effect of IDA.

However, thanks to health insurance, a hematologist referral and an intravenous, slow-drip iron infusion a few weeks later, I was healed! I felt renewed, and ready, once again, to take on the city that never sleeps. The iron infusions have since become annual. I know when I start to chew ice, my iron is likely low.


So, I called my local hematologist to request labs to check my iron levels. An email containing the order arrived a few days later soliciting the following tests: CBC, CMP, Iron, Ferritin, Transferrin, and TIBC. The order also reflected two diagnoses under my name:

09.10.12 Primary D50.9 Anemia, iron deficiency, unspecified
12.13.13 Secondary N18.2 Chronic Kidney disease, Stage II

What is wrong with this picture you ask? A secondary diagnosis of chronic kidney disease (CKD), coded five years ago, apparently—but completely unbeknownst to me! As you can imagine, I was very worried and confused.

After several phone calls, long holds, complaints, tears, and finally, a curt conversation with a medical staff member, I was told several unsettling things in no particular order: “it’s just a billing code,” “most people wouldn’t even notice,’’ and “do you want me to take it off and resend?” Little did she know she wasn’t speaking to “most people!” And quite frankly, I was pissed.


I’ve since learned IDA commonly occurs in people with CKD, which affects about 30 million adults in the U.S.2 Anemia might begin to develop in the early stages, when someone has 20 to 50 percent of normal kidney function. It tends to worsen as CKD progresses and that most people who have total loss of kidney function, or kidney failure, have anemia.

I’ve also since learned, based on my physician’s full review of my records, that I do not have CKD. However, my 2013 labs indicated I was on the threshold and it was recorded as such. Since my original hematologist and PA no longer work for the healthcare facility, I was told there were no further avenues to investigate why the diagnosis remained on my chart.


Last, I made sure my voice was heard when speaking with the PA, office manager, and compliance director to be more empathetic to such situations. As I experienced, a patient’s negative reactions are sometimes downplayed, dismissed, and/or disapproved of. However, the reality is, the majority of patients don’t understand their lab results, diagnoses, definitions, and health institutions’ protocols. We rely on you—the medical professionals—to teach us.

Let us all try to remember that we are in the business of healthcare, which involves not only selfless customer service, but education. Tread lightly with your patients if they are misinformed and/or upset. It’s their life, after all. And it’s your job.

  1. Miller JL. Iron deficiency anemia: a common and curable disease. Cold Spring Harb Perspect Med. 2013;3(7):1-13.
  2. NIH. National Institute of Diabetes and Digestive and Kidney Diseases. Accessed Nov. 7, 2018.