Hi Everyone,
this is my first post and apologise if this is has already been covered, but I am a bit puzzled. Seeing as there is widespread agreement that vitamin D deficiency is an important factor in MS and even quite high doses are harmless why is there so much variation in what people are being told by their doctors? Some people seem to get it prescribed straight away others not at all, some are told 1,000iu per day, others 5-10,000 iu per day. What is the MS Society’s recommendation?
I cannot answer your question, but following my latest consultation, my neuro has recently confirmed in writing I should be on 2000 IU per day (which is fine, as I have been ever since before diagnosis, when the penny began to drop it was MS).
He also recommends all first degree relatives should be doing the same (I can already predict my brother’s reaction to that: “Pah, cobblers! I don’t need to worry about MS - it’ll never happen!”)
Ironically, though, I have never, ever been prescribed them. I find it really odd that the NHS - through my consultant - should be recommending I I take something, but never offering to supply it.
True, Vitamin D is among the less expensive things one might be advised to take, and a prescription is almost certainly dearer than the over-the-counter cost. Then again, although I still pay for my prescriptions (despite having v. low income AND not eligible for any benefits, due neither sick nor poor enough yet), I always invest in a prepay certificate, which means I do not pay any extra for my medicines, no many how many I have, so simply adding Vitamin D to the list would effectively be free (to me) instead of self-funded.
Can’t think of any other case where a doctor says you should be on something, but you are supposed to go out and buy it yourself.
I am not sure the Society make blanket medical recommendations: I think they would say: “Ask your neuro.” Sorry this doesn’t help much - especially if your neuro says something completely different to mine!
Tina
Hi Dave , welcome to the forum 
, I was told by my ms nurse to take 5,000iu a day .remember Dave it’s vitamin D-3 that you need to take .i hope you get sorted . Take care
It’s quite a good idea to get tested first and find out if you are deficient.
just for clarification, I am a carer not a sufferer, thank you everyone for your helpful information, much appreciated. But my central concern is that in this the most simple and basic possible therapy we do not seem to have a standard approach. Given the high likelihood of a link with MS shouldn’t it be standard to offer everyone diagnosed with MS a vitamin D test? And then people can be told what dose is appropriate instead of the current uncertainty.
I take these… B50 complex; B12 sublingual 120mg; D3 5000 IU
my neuro recommended the D3 and the amount of it. he didn’t express any aversion to the B12 and had no opinion on the B50.
D3 toxicity is very low; i hear of people regularly ‘mega-dosing’ up to 50000 international units. Cost is as affordable as you can tolerate. With a cloud filled winter coming, D3 supplementation cannot be a bad thing.
my understanding is that a D3 deficiency test is not a good guide to go by.
those with MS could simply have a need for a ‘higher than most’ level of D3; we might therefore be deficient even if in terms of the general populace our levels are within tolerable limits.
It is not impossible to OD - a former regular on this forum managed it (no bearing on why she no longer posts).
Furthermore, the symptoms of overdose are very similar to those of MS, so she thought her MS was just getting worse, when all the time, it was Vitamin D toxicity. She did have the decency to come here and be honest about her mistake, so others wouldn’t fall into the same trap.
I think the risk of OD is very low with “normal” strength supplements - even if someone was NOT already deficient. But it’s the “mega-dosing” without regular testing that is the risky practice.
Tina
thanks for clarifying Anitra.
having re-read my post, i see how it could suggest that D3 mega-dosing is completely risk free. it is not. toxicity is very low, but it does still exist.
but with that said, some do mega-dose, but as from my example, i am disinclined to exceed 5000 units daily
Getting your levels tested seem like a sensible precaution to me and will help avoid any possible problems (however rare) of taking too much.
This thread on facebook details one unpleasant example and generated a response from the MS Trust.
Multiple Sclerosis Trust Hi, Just to pull out the final lines of the NHS choices post – thanks Andy -
“Taking too many vitamin D supplements over a long period of time can cause more calcium to be absorbed than can be excreted. The excess calcium can be deposited in and damage the kidneys. Excessive intake of vitamin D can also encourage calcium to be removed from bones, which can soften and weaken them.”
The current recommended daily intake of vitamin D in the UK is 400IU - based on reducing the risk of rickets. In August 2012, the European Food Safety Authority increased the Tolerable Upper Intake Levels (the levels that can be taken daily without causing harm) to 4000IU.
There’s more in the Vitamin D factsheet ://www.mstrust.org.uk/…/publica…/factsheets/vitamind.jsp
I have read that people taking large doses of vitamin D / Calcium should also take vitamin K so that the calcium is directed to the right parts of the body instead of causing problems.
There’s going to be a few interesting studies regarding vit D. I wonder if some of the doses mentioned are too high.
A larger study (approximately 300 participants) plans to investigate whether vitamin D supplements (100,000 IU every 2 weeks, equivalent to 7000 IU/day) for up to 2 years will reduce the risk of conversion from CIS to full MS31. The study is expected to finish in June 2017.
The PrevANZ study in Australia and New Zealand (160 participants initially) will test whether daily doses of 1000, 5000 and 10000 IU vitamin D or placebo for 48 weeks after a first episode of symptoms can prevent or delay the time to a definite diagnosis of MS32. Results of this study are also expected in 2017.
Lenney, you are going to confuse some people:
" … conversion from CIS to full MS31 …" and " … to a definite diagnosis of MS32 …"
This will have folk wondering what MS31 and MS32 are.
When you did a copy-and-paste, you lost the superscript on the numbers. So, it was not obvious that these were the numbers of the references in the MS Trust publication quoted.
The case Tina (Anitra) quoted above of someone who ODed on Vit D was on a daily dose of 10,000iu.
I take 2400iu daily, and my MS Nurse wanted me to double this in the Winter - and it will probably come up again this winter. A recent blood test called for by my Neuro was reported in a way that indicated that he wanted PwMS to have a higher level of Vit D that a normal person would need. Interpolating between the recent blood tests and reported level suggests two things:
Geoff
Thanks for pointing that out 31 and 32 relate to the two references and here are the articles.
Efficacy of cholecalciferol (vitamin D3) for delaying the diagnosis of MS after a clinically isolated syndrome (D-Lay-MS).
study details [Accessed July 2013]
Multiple Sclerosis Research Australia. PrevANZ.
study details [Accessed July 2013]
l get my vitd3 levels tested regularly - via a postal blood spot test from CityAssays lab in B/ham. Did do it at first every 6 months - now l leave it for a year. My levels were extremely low to begin with and l did take 20.000ius daily for nearly two years. Now l take 10.000ius daily and still my levels do not reach higher then 98nmols. lts recommended by vitamindorg that between 150/225 is the optimum level. Magnesium is recommended to take with D3. The 400iu level that the nhs have been using is over 75yrs old.
lnterestingly, the BBC2 programme Trust me l am a Doctor did a test on office workers on their vitamin d3 level - a couple of weeks ago. They were all deficient - some dangerously so. They were then split into 3 groups. One made to sit in the sun during their lunch break - then another given oily fish to eat 3 times a week. The last group given the supplement 5,000ius. They all improved - the supplement group did the best. lts worth googling vitamin d3 deficiency - as it effects many of us - not just MS. 17 types of cancer is connected to a deficiency as well as all other auto-immune diseases. Which include Crohns/Coeliac/Fybromyaliga/Parkinsons/Osteo Arthritis/Hypertension etc.
l notice now that lots of childrens yoghurt type food and cereal is fortified with vitamin d3 and calcium - so the message is getting through. This is after an upsurge in rickets/brittle bone disease and heart problems in babies.
20 mins of exposure to bright sunshine is the equivalent of 20,000ius of vitd3
l found the first check of my levels that l had from my GP - when it came back - all they would say was that it was ‘within the correct margins’ what the nhs call correct l presume is pre-war! And they linked D2 to it. Now D2 is the one that you can easily overdose.
Vitamin d3 helps with lower back pain and also depression. There is evidence that people who take a multivitamin with added vitamin d3 show a 40% reduction in the risk of developing MS. [This is from ms-uk.org/vitaminD]
Make sure all your family and friends keep their levels up.
Just a note on the exposure to ‘20 minutes exposure to bright sunlight’. It has to be between May and September for your body to make Vitamin D in the UK. In the other months of the year, the sun isn’t strong enough for your body to do it.
I have written on here before about taking 10,000 iU of D3 a day for years. When I finally got my levels measured, I was up at around 430. I never saw any harm from it, although it did give me a fright. My (reliable) neuro was reassuring about that level. I only take 5,000 iU now, and I don’t remember to take it every day.
Sewingchick,
Yes, you are so right about how limited we are for getting our dose of sunlight. l just wanted to show how the sun works on our levels. l am still taking 10,000ius daily - and still not getting any higher. And l spend a lot of time outdoors - and eat lots of fish. Obviously, my body is not absorbing it well - if at all - which is why l have always been deficient. GP and Neuro - just poo-poo the idea of vitamind3.
Several years ago, l fell and smashed my ankle really bad - spiral fracture. l was shocked at how much damage l had done just from a silly slip. l asked for a bone-density test - which showed how bad l was. After taking the 20,000ius daily for a year - the next bone-density test came back as excellent. So things have improved.
That’s really interesting. What were your vitamin D levels after you had been taking 20,000 iUs daily? If they were up to normal levels … doesn’t that mean you just need a higher dose than some people? Could you have got higher bone density without getting blood levels of vitamin D where they needed to be?
I saw an endocrinologist who recommended to my GP that in addition to my Adcal D3 twice a week I already took ( I have osteopenia and little mobility and a mother who had osteoporosis) that I should also be prescribed ProD3 20,000 ku a week.
so I think insistence on referral to an endocrinologist may help you get it on the NHS.
Susi