Vitamin D

[cazieboy]

Hi

There has been a lot of talk recently about the benefits of Vitamin D but I am not sure how safe it would be for my husband who has Cystinuria to take. Can anyone advise?

Thanks

[APdesigns]

I have cystinuria and have recently started taken Vitamin D. I started because of an article in the Covid-19 Zoe app which I report to everyday. Would like to hear from Matt Bultitude if he thinks it is OK to take when you have cystinuria and on penicilliamine tablets.

[cazieboy in reply to APdesigns]

Hi APDesigns,That is a very good idea. Hopefully Matt Bultitude will find time some time soon to give us a response. It would be good to hear it is safe, or otherwise of course.

Thanks for your input.

Stay safe,

Vivien

[MattBultitude Administrator]

Hello. Funnily enough I typed out a long reply on my phone a week ago and accidentally deleted it just as I was about to post - so apologies for the even later reply but here goes:

There is no straightforward answer to this and this has been a common question since UK government and NICE guidance advice for all "adults, young people and children over 4 years" to take a daily supplement of vitamin D. The actual advice is here:

nice.org.uk/guidance/ng187/...

So the "experts" obviously feel there is a benefit to having a normal vitamin D level. Now whilst it couldn't be done for the entire population, anyone concerned about taking supplements (e.g. recurrent stone formers) could ask their GP to check their vitamin D levels because if they are normal then you don't need the supplement.

Regarding stone risk we actually wrote an article about the risks of vitamin D and stones 2 years ago - it is behind a paywall but I am happy to send to people if you contact me. This is the link:

bjui-journals.onlinelibrary...

In terms of stone risk, this is generally low but high levels of vitamin D would potentially increase the calcium levels in the urine - and therefore risk of calcium containing stones. So this would most effect calcium stone formers - which is the most common type of stone - but if you are reading this it is likely because you are reading about the risks in cystinuria i.e. cystine stones not calcium ones. So therefore the risk will be even lower to taking a supplement.

Hope that is helpful. In short, treatment is definitely recommended if deficient in vitamin D. If taking supplements then low dose (which is what is recommended) is preferential than high dose supplements. It is important to say this advice is for vitamin D on its own and not in combination with calcium as well which definitely increases the risk of stone formation.

[cazieboy in reply to MattBultitude]

Thank you Matt for your reply. It sounds like, on its own, the 10 mg recommended dose doesn't increase the risk of stone formation in cystinuria patients. I hope I have got that right.I appreciate your taking the time to respond especially at this busy time.

Wishing you a safe and festive Christmas and all the best for 2021.

Vivien