What symptoms might I have?
- Back pain which goes round your side to the front or in to the groin is typical for kidney stones.
- Kidneys stones can cause blood in the urine, this will usually be when you also have pain from kidney stones. If there is blood in the urine and no pain this could be an important sign of another illness and you should discuss with your doctor.
- Kidney stones can block the urine from coming out of the body, when this happens it is more likely that you will also get an infection in the urine or in the kidneys around the stone. This can make the urine smelly and cloudy and can give you fevers.
- Often kidney stones are a one-off event. However if it is something that happens more often, it is important to investigate why you keep getting the kidney stones. This is because over time the inflammation from many kidney stones can cause permanent damage to the kidney.
- If you would like to find out more about some diseases which cause recurrent stones click here
Investigations and Diagnosis
- We will ask lots of questions about the symptoms you have had including any times you might have had kidney stones or infections or been to hospital
- Please bring either all your medications or a list of your medications with you
- We will also ask if anyone in your family has had problems with kidney stones or kidney disease in general
- If you have any letters or scans or test results from your doctor or the hospital we will want to see these
- We will check your blood pressure and heart rate and we may do a physical examination you (listen to your chest, feel your tummy/back, check your pulses etc)
These are some of the tests that we are likely to ask for before, during or after your appointment:
- Urine tests – looking at different levels in the urine, for example of calcium
- 24 hour urine collection – click here for instructions
- Blood tests to look at your blood counts, kidney and liver function
- If you have passed any kidney stones in the past we will want to know if these have been analysed
- Scans – we may suggest an ultrasound or CT scan, these do not hurt but give us important pictures of your kidneys and other organs
- Molecular genetic testing – we may take some blood to look for mutations (changes) in the DNA which might tell us the cause of the kidney problems – for more information on genetic testing click here
- Occasionally we might suggest a biopsy (taking a tiny piece of kidney)
Treatments and:
What’s next?
The treatment plans suggested by your doctor will depend on the results of the tests you have at the clinic. Treatment may include a change in diet or various medications (tablets or injections). Your doctor will discuss with you the options, risks and benefits of the different treatments.
Dietary advice
- It is very important to drink lots of water (usually 2-3L) *
- Avoid foods with high Oxalate content.
Avoid consumption of: Green Smoothies/Juicing — Spinach — Rhubarb — Almonds — Tea — Multivitamin Tablets
Instructions for 24 hour urine collection
- You will be given a special container for your 24 hour urine collection. Some containers have a preservative, usually a liquid acid in them. This must not be thrown away.**
- You must be careful not to touch this liquid as it can burn.
- If possible it is easier to do the collection on a day when you are at home
- Start when you usually wake up in the morning (e.g. 8am), empty your bladder into the toilet and flush away. You will now have a an empty bladder and the collection can begin from now. Write down the time and date on the label provided.
- For the next 24 hours you must collect all the urine that you pass in the container (if easier you can use a smaller jug to transfer urine into the container)
- At the end of the 24 hours (eg 8am the next day) empty your bladder into the container for the last time. Make sure all the details on the label are filled in. Take the container to the reception at …
Information about genetic testing
- Genes are made of DNA. DNA holds the information that cells need to grow, survive and reproduce. There is a unique DNA code for each gene and each gene holds the information (in the form of DNA) for a specific protein.
- The genes of a person come from their parents. Humans have one copy of gene from their mother and one copy from their father. Variations in genes can cause some diseases, these diseases can be inherited from our parents, or there may be other blood relatives with this disease.
Information for professionals
- Contact us for information or advice
- More information for physicians:
Demoulin N, Aydin S, Gillion V, Morelle J, Jadoul M. Pathophysiology and Management of Hyperoxalurie and Oxalate Nephropathy: A Review. Am J Kidney Dis. 2021 Sep 9:S0272-6386(21)00834-9. doi: 10.1053/j.ajkd.2021.07.018. Epub ahead of print. PMID: 34508834. - https://www.orpha.net (Infoportal on rare diseases)
- National Kidney Foundation
Information for patients
Links:
- Living with PH1 (english, german, italian, spanish, netherlands, arabic)
- PH-Europe (PDF, english)
- ph-europe.net (english, german, french, italian, portuguese, spanish, turkish)
- oxaleurope.org (english)
- ohf.org (english)
- Oxalosis and Hyperoxaluria Foundation (english — a collection of videos)
- Oxalosis and Hyperoxaluria Foundation on Twitter
- UK Kidney (english)
Team
Charité Campus Mitte
Medizinische Klinik mit Schwerpunkt Nephrologie und Internistische Intensivmedizin
Prof. Dr. Felix Knauf
Dr. Gerlineke Hawkins-van der Cingel