Hi Everyone,
This is my first time posting here.
Are there any supplements that should not be taken by people with cystinuria? I am exhausted all of the time and I want to take a supplement to help myself but I have been told that due to the complexity of the biochemistry of Cystinuria to be careful as certain supplements could lead to stone formation
Hi MagsBC, I have heard that as well and unfortunately its a bit of vacuum of information other than to avoid calcium supplements.I took magnesium for sleeping problems a couple of years ago and also developed a 2cm stone in my right kidney which took 4 operations over 5 months to remove. No direct correlation established but it made me wary.
I also tried Alpha Lipoic Acid because it is supposed to help cystine metabolism, but that made me feel unwell.
Best advice that I can give is mild exercise and good hydration and eat moderate clean protein, avoid processed foods (especially processed meat) and too many carbohydrates.
I say this because I'm convinced that the gut plays a vital role in cystine metabolism before the kidneys become involved.
Do your best to maintain a healthy gut microbiome for starters
Hope that helps you somewhat 🙂
Hi,You did not say if you have been to your GP for basic tests for tiredness.
If you are tired all the time I think you should go to your GP and ask for a full blood count, iron level (ferritin) for anaemia, thyroid tests, folate and B12 and very importantly vitamin D.
Mr Bultitiude wrote an answer on vitamin D a few months ago and he clarified the requirement of vitamin D according to government guidelines . This should be followed as low vitamin D makes people very tired. Blood sugar or HbA1c to check for diabetes is also important.
As cystinurics kidney function and probably liver function are important especially if on medication.
Following that look at your lifestyle. Regular exercise, weight and a balanced diet are extremely important in energy levels.
If all these are normal your GP might want to investigate further.
In a nutshell visit your GP and discuss before embarking on supplements.
