The use of moderate dose vitamin D supplements remains controversial. In this newsletter I provide a rationale, based on bone health, for keeping yourself vitamin D replete.
I live in Australia. My vitamin D levels are checked every 6 months by my Neurologist as standard practice - funded by Medicare (no cost to the pwMS). I take vitamin D tablets, more during winter and less in summer. Is there some way pwMS can lobby the NHS to get vitamin D testing. I find this outrageous. Most Australians generally have their Vitamin D also checked by their Family Doctor, also funded by Medicare - no cost to the client. I’m so disappointed to hear NHS won’t fund this important test.
We are allowed to order one vD level per patient per year and if we order an additional vD level within 12 months on the system the order gets cancelled automatically.
Unnecessary vitamin D tests cost NHS millions says ARC EM-funded study
More than £38 million could be saved annually by the NHS if the availability of vitamin D testing kits was curbed, a study funded by ARC East Midlands has concluded.
It comes as people have been urged people to take the ‘sunshine vitamin’ to help boost their overall health amid mounting evidence it can protect against COVID-19.
There has been a two to six-fold increase in requests for the sunshine vitamin in the UK during the last 18 years and aside from the claims vitamin D benefits coronavirus patients, this increase in vitamin D is without any clear gain in health benefits, according to a team of researchers from Leicester.
The corresponding costs of analysis of vitamin D in primary care have increased three-fold, with an estimated rise in annual spending of £28 million in 2004 to £76 million in 2011.
In response, this study aimed to determine the impact on vitamin D test ordering across Leicestershire, following a redesign of the electronic request forms used by GP practices to incorporate the latest evidence.
The redesign of the form helped introduce more clinical reasoning to prescribing a vitamin D test, moving it from the first page where it was previously easy to access and acted as more of a tick-box exercise.
This led to a 36.2 per cent decrease in requests for vitamin D, from 41,254 before the change to the form to 26,336 in the period afterwards.
Lead researcher Dr Veena Patel, Consultant Rheumatologist from Leicester’s Hospitals, added: “National and international guidelines recommend vitamin D testing be performed only in those patients who present with symptoms such as bone pain, muscle weakness, symptoms suggestive of rickets, or those patients who have low serum calcium levels. Public Health of England advises everyone not just “at risk” groups to take 10 micrograms (400 international unit) of vitamin D daily.”
Dr Pankaj Gupta, Consultant Metabolic Physician/Chemical Pathologist and HOS Department of Metabolic Medicine and Chemical Pathology who also helped lead the research and is also from Leicester’s Hospitals, said: “We have noticed a year on year increase of 20% in Vitamin D requests over the last few years with a significant impact on resources. Hence measures, such as those highlighted in the manuscript, may lead to a better utilisation of the test.”
Professor Mayur Lakhani, a GP based in Leicester, said: “As a working doctor, I would urge everyone to review their requests for vitamin D testing and avoid ‘routine’ requests which is both unnecessary and wasteful. This is great example of a partnership between the NHS and researchers. The project came directly from concerns raised by GPs about overdiagnosis. The findings show that there are simple and practical ways of reducing unnecessary investigations.”
Cost of testing for vitamin D was obtained from the National Institute for Health and Care Excellence (NICE) economic evaluation published in 2014, which estimated the cost per vitamin D test to be £16.50.
This estimate was adjusted to 2017 prices using the hospital and community health services inflation index and a value of £17.17 per vitamin D test was used in the analysis.
A cost analysis estimated that a reduction of 36.2 per cent in vitamin D requests would lead to an annual saving of £638,758 across Leicestershire.
Assuming that Leicestershire covers a population of 1,100,415, which constitutes 1.65% of the UK population of 66,579,184, the results can be extrapolated to estimate that delivering the intervention across primary care in the UK could potentially lead to an annual saving of £38,712,606.
Professor Kamlesh Khunti, Director of the ARC EM and Professor of Primary Care Diabetes and Vascular Medicine at the University of Leicester said: “This study shows the impact of implementing a simple pragmatic redesign of the electronic request screens led to a substantial reduction in vitamin D requests by more than one-third.
“It reduced expenditure by more than half a million pounds in Leicestershire alone, which could translate to a potential saving of around £38 million if implemented across the UK.”
The study was supported by the NIHR Leicester Biomedical Research Centre (BRC).
Very interesting, thank you, had no idea that immune cells consumed vitD3 - amazing! I read somewhere that bit D3 is a hormone precursor but have to admit I don’t really understand but just know it’s crucial to most cells! Do you know if the sprays are as effective as the tabs Prof G? I give the kids (9/12) a squirt of the 2000iu as a (hopefully) preventative MS measure. Final query - although no conclusive studies, do you think that very low vitD3 levels throughout childhood may contribute to developing MS later in life? Thank you!!!
5000 IU/day keeps my levels around 150nmol/L. I do take some calcium as I do not eat any milk products. I will ask my HCP to get al my vitamins checked, this a long time ago. Should be standard for pwms as they follow strict diets most of the time.
Great you are doing the right thing and have found the sweet spot. Have you noticed that the cheap online supplier of vD supplements are now making 4,000 IU capsules. In the past, there were only 5,000 IU capsules and to get to 4,000 IU you need to take 2 x 2,000 or 4 x 1,000 IU capsules which made it more expensive? I am now 4,000 IU/day.
I am taking a liquid form (dissolved in MCT oil) 1 drop is 250IU it is pretty cheap. I do spend a lot of money on supplements/herbs. Most of it is probably flushing money down the toilet. Well i like to think there is nothing wrong with doing stupid things as long as your aware of it.
My neuro checks my VitD levels every 6mo. When I was first diagnosed I wasn't supplementing and I had a level of 17ng/mL. She told me to start taking VitD and I now take 6000IU daily and hover around 40ng/mL. She says that is OK and has not advised me to take more.
Yes, 40ng/ml is equivalent to 100nmol/L which is the lower limit that Prof Veith recommended. I note some vD experts want this to be moved higher; I am not sure I am convinced by the evidence for this.
My family members seem to keep their blood levels in the middle of the normal range with 5000 iu/50 kg. body weight every other day. I was once massively overdosed 13 years ago by a doctor who looked at me and my very advanced disability state and high relapse rate and assumed I was vitamin D deficient without testing (I never was) and directed me to take 100,000 daily for a week. It took about 2 months to get my levels down to the normal range.
Many thanks for this information, would you recommend 4000IU for prevention in adult children, and is it worth getting their vitamin D levels checked by one of the online companies if this isn't possible within the NHS? If you have any other advice for prevention in family members that would be great!
We tell all patients to tell their 1st and 2nd-degree relatives about MS risk and we advise vD supplements in them as well. The latter is based on the fact that vD supplements are safe and the potential benefits very high.
This calculator calculates the estimated daily intake required to reach your target vitamin D serum level.
For the calculation of the required daily intake simply key in current weight in kg, current daily supplement intake in mcg, current vitamin D (25OHD) serum level in nmol/L, the desired serum level and press calculate.
It's worth emphasizing that although vitamin d could just be a correlation(i doubt it-i have bad vD genes and my cousin with MS has even lower vD levels), sunlight exposure HAS a direct influence on MS severity. Don't listen to the dermatologist when they tell you not to go out in the middle of the day and get a good dose of sunlight, you will be better for it.
You may be right. The vitamin D link may simply be an association and a marker of how much sunshine you get and the real protective factor is the immunomodulation of T-cells in the skin by UVA. To sort out the skin-UVA vs. vD-UVB hypotheses we need to do a vD prevention trial.
William B. Grant latests recommendation is: Vitamin D levels 60-80 ng/ml (150-200 nmol/L) improve health: Cancer, COVID-19, CVD, diabetes. (IV Internat Vit D Mediterranean Congress, Rome, Aug. 30, 2021)
I started taking 1000iu pretty much the day after I was diagnosed, last year I went up to 3000iu after asking MS nurse. I had my levels checked privately and they are 159nmol/l - I have no idea what they ever were before that. I was considering taking more but now reading this maybe the 3000iu is fine
Vitamin D is such a critical nutrient in the human body. What I've found is that people who have low vitamin D levels and put the vitamin D right under their tongue can often get their levels up - even when other types of supplementation aren't working.
My neuro started me on D3 supplements about a year ago. My levels were extremely low. I am now up to 45ng but it has been with me taking 10K IU a day. I do not get out much at all because of the heat in Florida. My levels are checked every 4-6 months
I live in Australia. My vitamin D levels are checked every 6 months by my Neurologist as standard practice - funded by Medicare (no cost to the pwMS). I take vitamin D tablets, more during winter and less in summer. Is there some way pwMS can lobby the NHS to get vitamin D testing. I find this outrageous. Most Australians generally have their Vitamin D also checked by their Family Doctor, also funded by Medicare - no cost to the client. I’m so disappointed to hear NHS won’t fund this important test.
We are allowed to order one vD level per patient per year and if we order an additional vD level within 12 months on the system the order gets cancelled automatically.
https://arc-em.nihr.ac.uk/news-events/news/unnecessary-vitamin-d-tests-cost-nhs-millions-says-arc-em-funded-study
Unnecessary vitamin D tests cost NHS millions says ARC EM-funded study
More than £38 million could be saved annually by the NHS if the availability of vitamin D testing kits was curbed, a study funded by ARC East Midlands has concluded.
It comes as people have been urged people to take the ‘sunshine vitamin’ to help boost their overall health amid mounting evidence it can protect against COVID-19.
There has been a two to six-fold increase in requests for the sunshine vitamin in the UK during the last 18 years and aside from the claims vitamin D benefits coronavirus patients, this increase in vitamin D is without any clear gain in health benefits, according to a team of researchers from Leicester.
The corresponding costs of analysis of vitamin D in primary care have increased three-fold, with an estimated rise in annual spending of £28 million in 2004 to £76 million in 2011.
In response, this study aimed to determine the impact on vitamin D test ordering across Leicestershire, following a redesign of the electronic request forms used by GP practices to incorporate the latest evidence.
The redesign of the form helped introduce more clinical reasoning to prescribing a vitamin D test, moving it from the first page where it was previously easy to access and acted as more of a tick-box exercise.
This led to a 36.2 per cent decrease in requests for vitamin D, from 41,254 before the change to the form to 26,336 in the period afterwards.
Lead researcher Dr Veena Patel, Consultant Rheumatologist from Leicester’s Hospitals, added: “National and international guidelines recommend vitamin D testing be performed only in those patients who present with symptoms such as bone pain, muscle weakness, symptoms suggestive of rickets, or those patients who have low serum calcium levels. Public Health of England advises everyone not just “at risk” groups to take 10 micrograms (400 international unit) of vitamin D daily.”
Dr Pankaj Gupta, Consultant Metabolic Physician/Chemical Pathologist and HOS Department of Metabolic Medicine and Chemical Pathology who also helped lead the research and is also from Leicester’s Hospitals, said: “We have noticed a year on year increase of 20% in Vitamin D requests over the last few years with a significant impact on resources. Hence measures, such as those highlighted in the manuscript, may lead to a better utilisation of the test.”
Professor Mayur Lakhani, a GP based in Leicester, said: “As a working doctor, I would urge everyone to review their requests for vitamin D testing and avoid ‘routine’ requests which is both unnecessary and wasteful. This is great example of a partnership between the NHS and researchers. The project came directly from concerns raised by GPs about overdiagnosis. The findings show that there are simple and practical ways of reducing unnecessary investigations.”
Cost of testing for vitamin D was obtained from the National Institute for Health and Care Excellence (NICE) economic evaluation published in 2014, which estimated the cost per vitamin D test to be £16.50.
This estimate was adjusted to 2017 prices using the hospital and community health services inflation index and a value of £17.17 per vitamin D test was used in the analysis.
A cost analysis estimated that a reduction of 36.2 per cent in vitamin D requests would lead to an annual saving of £638,758 across Leicestershire.
Assuming that Leicestershire covers a population of 1,100,415, which constitutes 1.65% of the UK population of 66,579,184, the results can be extrapolated to estimate that delivering the intervention across primary care in the UK could potentially lead to an annual saving of £38,712,606.
Professor Kamlesh Khunti, Director of the ARC EM and Professor of Primary Care Diabetes and Vascular Medicine at the University of Leicester said: “This study shows the impact of implementing a simple pragmatic redesign of the electronic request screens led to a substantial reduction in vitamin D requests by more than one-third.
“It reduced expenditure by more than half a million pounds in Leicestershire alone, which could translate to a potential saving of around £38 million if implemented across the UK.”
The study was supported by the NIHR Leicester Biomedical Research Centre (BRC).
Thanks for the explanation. Personally, I do feel reassured with my 6 months check.
Very interesting, thank you, had no idea that immune cells consumed vitD3 - amazing! I read somewhere that bit D3 is a hormone precursor but have to admit I don’t really understand but just know it’s crucial to most cells! Do you know if the sprays are as effective as the tabs Prof G? I give the kids (9/12) a squirt of the 2000iu as a (hopefully) preventative MS measure. Final query - although no conclusive studies, do you think that very low vitD3 levels throughout childhood may contribute to developing MS later in life? Thank you!!!
Yes, the squirt is as good as the tablets as good as the gummy bear vD supplements.
Yes, the data suggests low vD levels are a modifiable risk factor for MS. This is why we need vD MS prevention trials.
I take 10,000 iu per day which keeps my level at about 230nmo. I cut it to 5,000 a year ago & my vit D level dropped to 150nmo so I went back up.
150nmol is fine; 230 is too close to 250 which is considered toxic by some.
5000 IU/day keeps my levels around 150nmol/L. I do take some calcium as I do not eat any milk products. I will ask my HCP to get al my vitamins checked, this a long time ago. Should be standard for pwms as they follow strict diets most of the time.
Great you are doing the right thing and have found the sweet spot. Have you noticed that the cheap online supplier of vD supplements are now making 4,000 IU capsules. In the past, there were only 5,000 IU capsules and to get to 4,000 IU you need to take 2 x 2,000 or 4 x 1,000 IU capsules which made it more expensive? I am now 4,000 IU/day.
I am taking a liquid form (dissolved in MCT oil) 1 drop is 250IU it is pretty cheap. I do spend a lot of money on supplements/herbs. Most of it is probably flushing money down the toilet. Well i like to think there is nothing wrong with doing stupid things as long as your aware of it.
I really like how you write that the, "MS community can’t seem get its s*** together." I believe that’s a very apt description.
My neuro checks my VitD levels every 6mo. When I was first diagnosed I wasn't supplementing and I had a level of 17ng/mL. She told me to start taking VitD and I now take 6000IU daily and hover around 40ng/mL. She says that is OK and has not advised me to take more.
Yes, 40ng/ml is equivalent to 100nmol/L which is the lower limit that Prof Veith recommended. I note some vD experts want this to be moved higher; I am not sure I am convinced by the evidence for this.
My family members seem to keep their blood levels in the middle of the normal range with 5000 iu/50 kg. body weight every other day. I was once massively overdosed 13 years ago by a doctor who looked at me and my very advanced disability state and high relapse rate and assumed I was vitamin D deficient without testing (I never was) and directed me to take 100,000 daily for a week. It took about 2 months to get my levels down to the normal range.
Many thanks for this information, would you recommend 4000IU for prevention in adult children, and is it worth getting their vitamin D levels checked by one of the online companies if this isn't possible within the NHS? If you have any other advice for prevention in family members that would be great!
We tell all patients to tell their 1st and 2nd-degree relatives about MS risk and we advise vD supplements in them as well. The latter is based on the fact that vD supplements are safe and the potential benefits very high.
Any thoughts on taking K2 alongside the vitamin D - there seems to be quite a cost difference so if the K2 is superfluous...
K2 is superfluous.
Thanks!
Vitamin D supplements: what dose?
Why don’t we use the Vitamin D*calculator™?
This calculator calculates the estimated daily intake required to reach your target vitamin D serum level.
For the calculation of the required daily intake simply key in current weight in kg, current daily supplement intake in mcg, current vitamin D (25OHD) serum level in nmol/L, the desired serum level and press calculate.
https://www.grassrootshealth.net/project/dcalculator/
It's worth emphasizing that although vitamin d could just be a correlation(i doubt it-i have bad vD genes and my cousin with MS has even lower vD levels), sunlight exposure HAS a direct influence on MS severity. Don't listen to the dermatologist when they tell you not to go out in the middle of the day and get a good dose of sunlight, you will be better for it.
You may be right. The vitamin D link may simply be an association and a marker of how much sunshine you get and the real protective factor is the immunomodulation of T-cells in the skin by UVA. To sort out the skin-UVA vs. vD-UVB hypotheses we need to do a vD prevention trial.
William B. Grant latests recommendation is: Vitamin D levels 60-80 ng/ml (150-200 nmol/L) improve health: Cancer, COVID-19, CVD, diabetes. (IV Internat Vit D Mediterranean Congress, Rome, Aug. 30, 2021)
https://is.gd/6Y2aw5
I started taking 1000iu pretty much the day after I was diagnosed, last year I went up to 3000iu after asking MS nurse. I had my levels checked privately and they are 159nmol/l - I have no idea what they ever were before that. I was considering taking more but now reading this maybe the 3000iu is fine
Vitamin D is such a critical nutrient in the human body. What I've found is that people who have low vitamin D levels and put the vitamin D right under their tongue can often get their levels up - even when other types of supplementation aren't working.
https://mattcook.substack.com/p/men-taking-vitamin-d-are-still-too
My neuro started me on D3 supplements about a year ago. My levels were extremely low. I am now up to 45ng but it has been with me taking 10K IU a day. I do not get out much at all because of the heat in Florida. My levels are checked every 4-6 months