Cystinuria is a rare condition that causes kidney stones. It affects approximately 1 in 7000 people and affects men and women equally. Symptoms usually occur between 10 and 30 years if age.

The kidney contains millions of tiny filters called nephrons that make urine and help control the level of salts and minerals within our body. A normal kidney will filter everything, except for blood and protein, into the tubule of the nephron. The tubules then reclaim everything that the body needs and gets rid of the things it does not.

In cystinuria part of the tubule doesn’t work properly and is unable to reabsorb the amino acids, cystine, lysine, ornithine and arginine. This results in high levels of these amino acids in the urine. The only one of the amino acids that causes a problem is cystine as it doesn’t dissolve very well in the urine. Therefore it is able to form crystals which then grow into cystine stones.

Patients are usually unaware they have cystinuria until they develop their first kidney stone. Renal Colic (severe pain in the back, side and groin area) is often the first sign.

Information about the service

Patients with Cystinuria will be seen in the specialist renal metabolic clinic. The renal metabolic clinic is one of few in the country with a long experience of managing metabolic conditions that affect the kidney, such as cystinuria. You will be seen in the clinic by a specialist kidney doctor or specialist kidney nurse.

How to contact the service

Emily Cooper – Renal Metabolic Clinical Nurse Specialist

Tel: 0121 371 8707
Email: Emily.Cooper@uhb.nhs.uk