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Cystinuria
Reviewed by Medicinsk Expert•Last updated: 2026-10-22•Condition

Cystinuria

Cystinuria is an inherited genetic condition characterized by the buildup of the amino acid cystine in the kidneys and bladder, which can lead to the formation of painful stones and urinary tract blockages.

Description

Cystinuria is a condition characterized by the buildup of cystine, a building block of most proteins, in the kidneys and bladder. As the kidneys filter blood to create urine, cystine is normally absorbed back into the bloodstream. People with cystinuria cannot properly reabsorb cystine into their bloodstream, so the amino acid accumulates in their urine.

As urine becomes more concentrated in the kidneys, the excess cystine forms crystals. Larger crystals become stones that may lodge in the kidneys or in the bladder. Sometimes cystine crystals combine with calcium molecules in the kidneys to form large stones. These crystals and stones can create blockages in the urinary tract and reduce the ability of the kidneys to eliminate waste through urine. The stones also provide sites where bacteria may cause infections.

Frequency

Cystinuria affects approximately 1 in 10,000 people.

Causes

Mutations in the SLC3A1 or SLC7A9 gene cause cystinuria. The SLC3A1 and SLC7A9 genes provide instructions for making the two parts (subunits) of a protein complex that is primarily found in the kidneys. Normally this protein complex controls the reabsorption of certain amino acids, including cystine, into the blood from fluid that will become urine.

Mutations in either the SLC3A1 gene or SLC7A9 gene disrupt the ability of the protein complex to reabsorb amino acids, which causes them to become concentrated in the urine. As the levels of cystine in the urine increase, the crystals typical of cystinuria form. The other amino acids that are reabsorbed by the protein complex do not create crystals when they accumulate in the urine.

Genes Associated with Cystinuria

  • SLC3A1
  • SLC7A9

Inheritance

This condition is inherited in an autosomal recessive pattern, which means both copies of the gene in each cell have mutations. The parents of an individual with an autosomal recessive condition each carry one copy of the mutated gene, but they typically do not show signs and symptoms of the condition.

Other Names for This Condition

  • CSNU

Additional Information & Resources

Genetic Testing Information

  • Genetic Testing Registry: Cystinuria

Genetic and Rare Diseases Information Center

  • Cystinuria

Patient Support and Advocacy Resources

  • National Organization for Rare Disorders (NORD)

Clinical Trials

  • ClinicalTrials.gov

Catalog of Genes and Diseases from OMIM

  • CYSTINURIA

Scientific Articles on PubMed

  • PubMed

Frequently Asked Questions

Increase fluid intake to produce at least 2.5–3 L of urine daily, limit sodium (which raises cystine excretion), keep protein moderate (especially animal protein), and consider a low‑oxalate diet; some clinicians also recommend a diet rich in citrus fruits to alkalinize urine.
The earliest clues are recurrent kidney stones, especially if they are composed of cystine, and a family history of stones; urine that appears cloudy or has a characteristic hexagonal crystal pattern on microscopy can also hint at cystinuria.
Collect a 24‑hour urine sample after a normal fluid intake; avoid high‑protein meals and certain medications (like diuretics) for 24 hours before collection, and keep the sample refrigerated or on ice until it reaches the lab.
Thiol‑containing drugs such as tiopronin, D‑penicillamine, or captopril bind cystine to form more soluble complexes; common side effects include skin rash, taste disturbances, nausea, and, rarely, bone marrow suppression, so regular blood counts and liver function tests are advised.
Source: MedlinePlus, National Library of Medicine

MedlinePlus brings together authoritative health information from the National Library of Medicine (NLM), the National Institutes of Health (NIH), and other government agencies and health-related organizations.

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