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D3 to blame ?

So I’ve just spent 3 glorious days in hospital with bloody kidney stones

Absolute agony, and the cause could be the D3 that I take daily ??

It all started last Friday when I started to get a pain in my right side that eventually just keeled me over.

After about an hour the pain passed and everything seemed to settle down, until Sunday night when the same pain came back but this time far far more intense plus I just could not pass any urine, no matter how long I waited I just could not go to the toilet.

It was horrendous.

So a visit to the local A&E soon found me being admitted for CT scans and the usual rounds of blood tests ect.

Outcome was kidneys stones that had dislodged and were making their way down through the kidney, however as yet they have not made a grand entrance into the open day light, that experience is yet to come !!!

The Urologist explained that taking high dosages of D3 could well be the initial cause of the stones as it leaves high amounts of calcium in the bladder, plus, and I didnt know this, people with MS are far more prone to kidney stones than people without MS, even if they are not taking D3, but taking it only adds to the problem.

Something to do with how the bladder malfunctions when you have MS.

I have done a bit of research and there is evidence to confirm this.

So it begs the question, is taking D3 worth the gamble, because there seems to be far more evidence to say high doses of D3 cause more kidney damage than it does good when treating the actual MS !

Afterall theres still not 100% proof that taking D3 helps to combat MS, but there is proof it can lead to kidney damage.

Like I said to the Urologist, It’s a catch 22 for us with MS, we take something thinking it may help, but in the long term it could be doing more damage.

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The answer to this is to have your vitamin D levels checked before you start taking supplements and more particularly, after you’ve started, to make sure you are taking the correct dosage. Just because something is a vitamin doesn’t mean that we should go stuffing ourselves with super high quantities because we’re told it’s a good idea. I’ve been taking 5000iu of Vitamin D3 for several years, but my level has been checked and it’s fine. The reason we’re advised to get our Vitamin D level checked and consider taking extra is that often people with MS are deficient in Vitamin D. But we should get it checked out. It’s a good thing that you’ve posted this. It brings the subject to the attention of people who are taking vitamin supplements without knowing why, and without having their levels checked to make sure they’re not doing more harm than good. Sue

My GP has checked my levels and confirmed they are higher than “normal”, more than double, but what is an ok high level ? When I asked my neuro how high should one go with D3 he said “the higher the better” but thats not a good guide to go by. I think my level at the moment is 119 ? It was the Neuro who suggested the dose in the first place. Problem here is anything over the norm (50), according to my GP, is regarded as higher levels, but most GP’s take guidance on medication from the MS clinics, so when they advice to take high levels of D3 for instance, the GP’s just tend go along with it. I take 5000iu daily and have done for 4 years, when I put this to the urologist he wasn’t surprised that kidney stones had developed. I can remember the neuro saying that people with MS should aim for “African” levels of D3, but they have never followed up on my actual levels, its always been left to myself to ask my GP to check them out, but even after having the results they don’t question them because it’s the MS clinic who advised it in the first place. My issue is do we really need the D3, is it actually proven to do anything for MS. Like I say I’ve not missed a single day from taking mine for 4 years, yet my MS has got worse, and now I’ve developed kidney stones. It does feel like a bit of a gamble that hasn’t paid off.

hiya aye-vitamins arent always good for us espec at wrong dosage! i had vit b12 checked-thats not done routinely-cos mum had a deficiency of that resulting in a heart op 4 months.sis and i were ok thankfully so i will continue to use the spray as mum couldnt process the tablets. its more complicated than that but thats the basics! i dont take any extra vit d. good post tho! ellie

My neuro said MS’ers should take D3 even if their levels are normal, they need to get them higher than normal, a lot higher.

So having them checked before starting on the D3 doesnt seem to make a difference as far as neuro’s are concerned.

At least as far as my neuro was concerned any way !

Another point to think about is that we are more prone to kidney damage than non MS’ers, so adding extra D3 into the mix is compounding the all ready there problem.

Thats how the Urologist explained it.

But he held back from telling me to fully stop taking D3, because the neuro had recommended it .

So it’s like no one will fully go against what another so called “professional” has advised.

Had but D checked last year. My level was the highest of our family, I have ms.

I use the spray fit d

I have had kidny stones a few times over the years the last time I went to gp who sent me to urologist who sent me for ct scan

Witch was clear then cystoscope witch was also clear no reason for any of my bladder problems iether I then went to gp in agony on an emergency appointment he looked at me then told me to increase pregabalin by 200 mg a few days later Mrs and I were on a day out we were going north for the day we stopped for lunch I was in agony took a painkiller felt better so carried

On next stop I was sore again bursting for pee went in toilet the pain was hellish I could feel the stone coming down and out it was quite a relieve after went to docter told him what happend he asked if I had the stone wasn’t going fishing in a public toilet

Last week I have same problem peeing to much and sore kidney differant gp sent me for whole range of blood tests and tests on circulation so blood drawn this morning including vitamin levels ?

Crumbs - poor you! What a horrid thing to happen and I am sorry to hear it.

Your experience made me sit up and pay attention for personal reasons too, given that my circumstances ae unnervingly similar to yours, down to the dosage of D3 taken as a supplement and your D3 levels when last measured. I have had no trouble with kidneys so far, though, and can only hope that my luck holds.

OK, off to read the information on the links now. Thank you for all that, and it is awfully useful for the rest of us to be alerted to these risks. I am only sorry it took you having such a painful and nasty time to bring it to our attention.

Get well soon, and I hope they find a way to dealing with your kidney stones that spares you further episodes.

Thanks again for the info.

Alison

I had a kidney stone in 2010 and wasn’t on D3 then. Started D3 in September 2016 on neurologist’s advice. Have never had levels checked, initially due to lab issue but recently as neither GP nor MS nurse think it’s needed and won’t affect the recommended 5000 iu dose. My MS nurse just says to avoid calcium supplements.

I read somewhere that D3 should be taken with K2 to ensure that the D3 pushes calcium to the bones from the blood. Can’t remember where I saw it but guessing here or Shift. Anyone else confirm?

I used to take a modest dose of D3 (2400iu daily).

I used to get a serious pain when emptying the bladder, followed by a few drops of blood, then nothing for a couple of months.
In July we moved house and I fell off the D3 wagon (have not found them yet), and the pain has not come back.
Of course, this could just be co-incidence.
I was going to stop looking and just order some more, but now I will hold off until I see my new neurologist on Monday.

Geoff

When I was first told I had a stone I didnt even know that I had it, no kidney issues what so ever, I found out after having a scan for another issue. That was 2 years ago, but had been on the D3 for about 2 years previous. The frustrating thing is that the Neuro and MS clinic advised the D3 and the dosage but have NEVER followed up on how my levels were and more importantly my calcium levels . It was only after reading about D3 myself that I realised how important it was to have your levels checked regularly, so once or twice a year I ask my GP to send me for a blood test, which by the way is a specific test when checking D3 levels. My GP is aware that the D3 dosage is high (5000iu) and the issues it can cause, however because the D3 and dosage was firstly advised by the Neuro, I get the impression that they dont really want to question that advice, but just go along with what the Neuro and MS clinic always say. Last night everything kicked off again with the pain and not being able to pass urine, so its now a waiting game as the stone makes it way out. NIGHTMARE !

I self prescribed vitamin D3 and ended up with a salivary gland stone which was so troublesome I had to have the gland out. My GP now prescribes vitamin D3 at the correct dosage.

I was originally prescribed 20000iu a day when, after a relapse, my vit d was almost non existent but I was also prescribed vit K2. When my levels were back to normal (12 weeks) and I was taken off the meds by my doctor. Since then, ive been self prescribing (from amazon) both vit d & k2. I think alot of people have heard about vit d so order on line but dont necessarily know about the importance of K2, whose role it is to make sure vit d is absored in the right. Here’s a link I’ve found. Is Vitamin D Harmful Without Vitamin K? Sharon x

Bit of an update. Looks like I might of passed the stone yesterday, which I’m holding onto so that the Urologist can confirm this. Also I’ve spoken to my MS nurse and he thinks I should drop my D3 input by half at least, at the moment its 5000iu daily. I’ll start this from next week. Annoyingly its taken over 4 years and developing kidney stones for the MS clinic to offer other advice regarding the D3. Personally I think anyone on high amounts of D3 should not only have their D3 levels monitored but also have regular CT scans on the kidneys. Having D3 monitored doesn’t give any notification of stones developing, and also how can a GP work out what is too high if your MS clinic just says you need higher than normal levels ?

I’ve been taking D3 for years at 5000iu. I’ve had my Vitamin D levels checked and they’re fine. I also had my kidneys UV scanned a couple of times, the first time was when I had them scanned due to an unusual UTI and the second time because the technician decided to do them while scanning my liver (due to drug related hepatitis). A sort of two for one deal. Each time, my kidneys have been absolutely fine.

I think you’ve been pretty unlucky jactac. But it is important to make sure if you are taking a self prescribed vitamin, or in fact one suggested by your neurologist, as mine was, to make sure your GP is aware of it, and to make sure you’re taking the right amount, ie have your levels checked.

Sue

Totally agree.

However, my levels were constantly checked, but it seems as though the checks were only to confirm to the MS team that my levels were raising as they wanted.

At no time in the 4 years did my MS team ever say to ease off or reduce the dosage, in fact on one occasions last year when my levels were around 74 the neuro said “get them higher, as high as African levels”.

My levels are now 119, which is high but nothing compared to some people, so at what point do we know when we are high enough ?

And more importantly, at what point is going above the “norm” too high ?

I bet there’s not many MS’ers who are taking high dosages of D3 get the kidneys CT scanned on a yearly basis or like yourself find you’ve been lucky enough to have " 2 for 1 deal" .

Surely it should be normal practice to do a CT scan alongside a blood test to check D3 levels at least yearly when your taking such high doses of D3, especially when it’s a known medical fact that high levels of D3 can cause issues, AND when the dosages were recommended by your MS team.

I spoke to the MS team yesterday and explained what had happened and the Urologists concerns and they immediately said the dose needed to be halved.

So I guess 4 years of taking 5000iu has really meant for nothing when they decide so easily to just halve the dose.

Do you also take vitamin k2? I was prescribed this when I had to take a mega dose due to virtually no vit d in my blood work! I always take it now.