Dear Alice,

I have a kidney disease which my doctors have been unable to diagnose. Where is a good place to look for some help? My doctors have told me it is nephrotic syndrome, but they don't know what is causing it. Can you help?

Dear Reader,

With any new diagnosis, it’s wise to study up about any treatment possibilities or lifestyle behaviors that support your health moving forward. Your diagnosis, nephrotic syndrome, is a result of damage to tiny blood vessels, called glomeruli, which act as filters in the kidneys. The damage, in turn, hinders the kidney’s ability to filter the blood properly. What may present a challenge with the diagnosis you’ve received is that there are many causes associated with it. As such, further investigation is likely in order to determine its root cause. In fact, doing just that is essential to identifying the best treatment for you. Keep reading for more on the condition, its potential causes, and how to get on the road to wellness.

Nephrotic syndrome is a condition that primarily affects the kidney’s ability to remove waste from the blood and pass it on to the urine. When glomeruli are damaged, they may also fail to maintain normal quantities of proteins in the blood. Therefore, this condition often causes unusually high levels of protein in urine as well as high cholesterol and fat in the bloodstream. This loss of protein and reciprocal retention of fluids and waste results in edema, which is also commonly referred to as bloating or swelling, particularly in the ankles and feet. You may also experience symptoms such as foamy urine, fatigue, and loss of appetite. Down the line, nephrotic syndrome can also lead to an increased risk for high cholesterol and blood pressure, blood clots, infections, kidney failure, and chronic kidney disease. Diagnoses are primarily made through blood tests, urine analyses, and kidney tissue biopsy; however, because there are a number of conditions that can bring about nephrotic syndrome, health care providers also focus on getting to the bottom of what’s causing the syndrome as well.

All of the potential causes of nephrotic syndrome can be broken out into two categories: primary or secondary. Primary causes include all diseases and conditions that exclusively affect the kidneys, such as:

  • Membranous nephropathy — The exact cause of this condition is unknown, but is thought to be associated with hepatitis B, malaria, lupus, and cancer. It typically results in the thickening of the membranes inside of the glomeruli.
  • Focal segmental glomerulosclerosis (FSGS) — This condition may be due to another disease or a genetic defect that causes scarring of the glomeruli.
  • Minimal change disease — This disease normally occurs in children. Interestingly, the cause of abnormal kidney function as a result of this disease may be difficult to determine because when kidney tissue is examined under a microscope, it appears to be normal.  

More often than not, the root cause of nephrotic syndrome is actually due to a secondary or underlying condition. Some of the more common secondary causes include (but aren’t limited to):

Nephrotic syndrome may also result due to allergies associated with insect bites, pollen, or poison ivy or oak in some people. The use of certain substances, including nonsteroidal anti-inflammatory drugs (NSAIDs), gold, or intravenously injected heroin, has been linked to it as well.

Once you and your provider have isolated the specific cause(s) of your condition, you can move on to the treatment phase. In addition to treating the direct cause behind your case of nephrotic syndrome, your health care provider may prescribe medication to address high blood pressure and cholesterol levels, to reduce the risk for blood clots, and to suppress the immune system. S/he may also recommend taking diuretics or water pills to help your kidneys flush excess liquids and other waste to the urine for elimination from the body. A visit with a registered dietitian to advise you on a diet that will be supportive of your treatment plan may also be a good idea. Foods that are low in fat and cholesterol may improve symptoms for some people. Reducing sodium intake and eating lean proteins may also be recommended.

Hopefully, you now have fewer unknowns regarding your condition. But, pursuing more information is a good idea, and the moment you and your provider are able to pinpoint the direct cause of your condition, you’ll be able to move toward recovery. To that end, if you haven’t already set a follow up appointment with your provider, you might go ahead and get one on the books. Alternatively, if you feel as if s/he hasn’t investigated this issue adequately and your concerns have not been addressed, there’s no reason not to seek out a second opinion or look for care elsewhere to get answers. The National Kidney Foundation may also be a good resource for more information about conditions that affect the kidneys and how to keep them healthy.

Alice!

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