Anemia and chronic itching in PKD patient with 1.1 creatinine. What's going on?

[chrissyrose1]

I am 37 year old woman with polycystic kidney disease. I have been anemic (33-34 hematocrit, very low iron stores) for a year now despite iron supplements. I am constantly fatigued, pale and fuzzy-headed. In past two months I have also begun to have severe body itching, to the point where I cannot sit at work or sleep at night, and am tearing at and scarring my skin. My nephrologist says these two signs cannot be indicative of failing kidneys because my creatinine level is still good (1.1). He says I have "winter skin" though my previous labwork did not test for phosphorous levels which I know is the main culprit of itching. I have never had this kind of itch before. He claims my anemia is not due to PKD and keeps referring me to my OB/gyn (although I do not have menorragia and my PAPs and thyroid have been fine)and wants me to have colonoscopy. PLEASE I watched my mother die of this disease and know anemia and high phosphorous are danger signs. But doctor is making me feel crazy! Should I demand phosphorous test and more aggressive treatment of my anemia? (EPO or Procrit) I am mom of 3, otherwise in great shape (was a runner for many years before this past year) and now I can't get out of my own way, I am so tired. I also get frequent waves of nausea and have diminished appetite. What should I do? Is creatinine level the only sign of kidney failure as he says. I feel so confused and worn-down. Thank you for any advice.

[Kevin Pho, MD]

Although renal failure is one of the complications of PKD, with a creatinine of 1.1, this is unlikely.  You are correct that failing kidneys often lead to an increase in phosphorus, but with a normal creatinine level, this would be an unlikely case.  

In the case of the anemia, there are plenty of reasons why this can happen outside of the kidneys.  Chronic disease itself can lead to anemia.  I would suggest further workup including the colonoscopy (as you ar doing).  The MCV (i.e. size of the red cell) would also be indicative.  A low MCV points to thalassemia or iron deficiency, a high MCV points to B12 deficiency or alcohol use.  A normal MCV suggests blood loss or chronic disease.  

If all the tests are not revealing, you may want to consider a hematology referral for further evaluation.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.