How do I know if I have IgA nephropathy?

TL;DR: IgA nephropathy is primarily identified through the presence of blood or protein in the urine, often discovered during routine check-ups rather than through noticeable symptoms. If you suspect you have IgA nephropathy, you should request a urinalysis and a blood test for kidney function to investigate potential glomerular inflammation.

What are the early signs and symptoms of IgA nephropathy?

Many individuals with IgA nephropathy—also known as Berger's disease—remain asymptomatic for years. The most common early indication is microscopic hematuria, meaning blood in the urine that is invisible to the naked eye but detected via a routine urinalysis. In some cases, patients may experience "episodic gross hematuria," where urine appears tea-colored, cola-colored, or pink, typically following a respiratory or gastrointestinal infection. Because these symptoms can be subtle, IgA nephropathy is often only caught when a doctor notices abnormalities during a standard health screening.

What patterns should I look for in my own health?

While you cannot self-diagnose IgA nephropathy, you can monitor for patterns that warrant a conversation with your healthcare provider. Pay attention to the following indicators:

• Urine changes: Notice if your urine is consistently dark, foamy (which may indicate protein), or occasionally blood-tinged.


• Post-infection flares: If you notice changes in your urine color shortly after a common cold or sore throat, this is a classic clinical trigger for the condition.


• High blood pressure: Unexplained hypertension, especially in younger adults, can sometimes be a secondary sign of underlying kidney stress.


• Edema: Swelling in the hands, feet, or ankles, though this typically occurs in more advanced stages of IgA nephropathy.

Which tests should I ask my doctor about?

If you are concerned about your kidney health, be specific when speaking with your physician. You should ask for a urinalysis to check for red blood cells and protein (albumin) and a serum creatinine test to calculate your estimated glomerular filtration rate (eGFR), which measures how well your kidneys are filtering waste. It is important to note that a definitive diagnosis of IgA nephropathy usually requires a kidney biopsy to identify the characteristic IgA deposits in the glomerular mesangium.

When are there red flags that require urgent evaluation?

While IgA nephropathy is typically a slow-progressing condition, certain symptoms require immediate medical attention. Seek urgent care if you experience sudden, severe swelling (edema), a significant decrease in the amount of urine you produce, severe flank pain, or sudden high blood pressure accompanied by headaches or vision changes.

How can I advocate for myself if my concerns are dismissed?

It is common for early-stage kidney issues to be overlooked. If you feel your concerns are not being addressed, bring a printed copy of your urinalysis results to your appointment. Ask your doctor, "Could you please explain the presence of blood or protein in my urine, and should we consider a referral to a nephrologist?" You are your own best advocate, and seeking a second opinion from a kidney specialist is a valid and reasonable step.

Next steps

• Schedule an appointment with your primary care physician to request a baseline urinalysis.


• If abnormalities are found, ask for a referral to a nephrologist (a kidney specialist).


• Join the DiseaseMaps.org community to connect with 347 other members who have navigated the diagnosis and management of IgA nephropathy.


• Keep a symptom diary tracking any changes in urine color or frequency, especially after bouts of illness.

Medical disclaimer: This content is for informational purposes only and does not constitute professional medical advice, diagnosis, or treatment; always seek the advice of your physician with any questions regarding a medical condition.

References

• National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK): IgA Nephropathy.


• NIH Genetic and Rare Diseases Information Center (GARD): IgA Nephropathy.


• Orphanet: IgA nephropathy (ORPHA:627).


• Kidney Disease Improving Global Outcomes (KDIGO) Clinical Practice Guidelines.