This newsletter makes a case for supplementing vitamin D for all people with MS and their families. The question is why and what dose of vitamin D should you be taking?
Thank you for this. When I was first diagnosed CIS I asked my neuro if there was ANYTHING I could do to stop getting MS ( I’m sure you’ve heard that thousands of times!)Bearing in mind I had never smoked, he said I could try Vit D, said unlikely to stop conversion to MS but wouldn’t do any harm. I started Supplements (but only in the winter - as per the guidelines ,apparently,). 24 months down the line, with a definite MS diagnosis, I find myself at a newly diagnosed MS day. Vit D levels came up in the presentation. After this I went to my GP and asked for a Vit D test, which he reluctantly did (as apparently they are “expensive” and as I now had MS he could justify it). Well, I came back insufficient ( even after my previous supplements). Put on a mega dose for a short period. After this I asked to be tested again, which they did, again, reluctantly. My levels had risen but were only just sufficient. After this I took matters into my own hands, so every year I pay £30 to Birmingham NHS (who do private vit D tests). That way I know my levels are neither too high or low. What all this highlights is the old saying - knowledge is power. I ve always thought that the NHS spends many millions treating people and insufficient resources on prevention.
My comment went off incomplete. So my question was to be "Is the reason the Vit D research never happened because pharma wouldn't want to fund it. It's cheap enough, so they wouldn't be interested. That leaves the charities? Are they interested?
Kit it is the size and duration of these studies that cost a lot of money not the intervention. Sadly goo quality data costs a lot to collect, maintain and analyse, not to mention to get the study participants to remember to take their vD supplements.
Why don’t we use the Vitamin D*Calculator developed by GrassrootsHealth Nutritional Research Institute (GRH NRI) to calculate an intake amount for pwMS?
The chosen target level could be 125 nmol/L.
Jen Aliano from GrassrootsHealth Nutritional Research Institute (GRH NRI) explains:
The majority of individuals do not get enough vitamin D from sun or food alone
so most do need to supplement. To determine how much is needed, the current vitamin D level should be measured and a target level chosen. Based on this information, an intake amount can be calculated using the vitamin D calculator here:
Because everyone responds differently to supplementation, re-testing is important after 3 months of the new dose. Many factors contribute to the variation in dose-response, such as those listed here:
Yep, nail on the head. Without class 1 evidence it is difficult to convince the NHS of the cost-effective of vD level monitoring and supplementing to a target.
Saying this the vD experts rarely agree with each other so half the problem are the experts.
Yes, and I increased my 2yr olds amount a month ago when I read what you recommended, and a few weeks later we got covid, so I feel that was lucky timing. All mild cold symptoms for us, btw. I use drops for babies still for her and the older child gets what you recommend in her vitamin and probiotic. I throw a large amount at hubs when he gets the sniffles and that's about as good as he's going to do. Mine is evaluated by a blood level with a goal of 50 (per my specialist, but I think 60 was my last level). I have a good supplement with k2 and a sperta D lamp, neither of which I remember every day, but according to my entries in my D app (Dminder) my estimated blood level there is still quite good. It's a fabulous app that will note the exposure you get in your latitude as well, if you go outside, and it's much less than I expected, even in mid summer here. I think the answer to what dose is, whatever I'm remembering to do is meeting the goal of 50, so I'm good, and blood levels are the way to go for people with MS.
very difficult to find an appropriate form of supplementation for a child at such high strength as the majority of forms at 2000 IU specify its for adults. Does this matter? i dont see my kids eating 5 x peppa pig chewable 400 iu tablets each day but 1 drop of high strength may be manageable
Thank you Gavin, for taking the time out of your busy schedule to investigate and report the effects of vD supplementation in MS. I am one of those you spoke about that have MS and have just being given a diagnosis of Osteoporosis following a t12 spinal fracture. (I would also mention that I went through menopause at the age of 35, which put me at a greater risk of Osteoporosis) So I fully understand the importance of vD both in a MS and Osteoporosis point of view. I currently take 4000iu daily which I put myself on just before the start of the Pandemic as a means of protection. Also encouraged my husband and daughter to take vD for their protection at that time. Since listening to various MS Podcasts about the importance of vD supplementation in the children of people with MS I’ve insisted my daughter takes vD daily to protect her immune system against Autoimmune Diseases including MS, not to mention the protection of her bones against Osteoporosis.
Once again thank you for all that you do for everyone living with MS.
Here's a question about giving Vit D to children: My son (now aged 10) was diary intolerant as an infant and has had no dairy since. Over the years it as probably become more a dislike rather than an intolerance. I was originally told to give him Vit D since it helps release calcium from other foods (like red peppers?!), and since my GP has not been able to offer me liquid Vit D for him, he's been prescribed Abidec (multivitamins) for years. So my question is, are you aware of a Vit D supplement for children who dislike the tablet or chewy sweet version?
Thanks for all this information. On the subject of getting Vit D supplements for our children, do you think GPs will happily prescribe them at the levels you suggest, or would we have to buy them ourselves? If we can't get them prescribed, are there some supplements which are more reliable than others?
I take vitamin D3 supplement every day. I also read you should take it with K2. Is that right? Also prices vary hugely. Is there something to look for when buying? I grew up in France playing outside a lot, though it was the north east there was plenty of sun...
Osteopaenia can reverse, but your are correct it is reported as a z-score or t-score in relation to a normal distribution that is age and sex adjusted.
Thank you for this. When I was first diagnosed CIS I asked my neuro if there was ANYTHING I could do to stop getting MS ( I’m sure you’ve heard that thousands of times!)Bearing in mind I had never smoked, he said I could try Vit D, said unlikely to stop conversion to MS but wouldn’t do any harm. I started Supplements (but only in the winter - as per the guidelines ,apparently,). 24 months down the line, with a definite MS diagnosis, I find myself at a newly diagnosed MS day. Vit D levels came up in the presentation. After this I went to my GP and asked for a Vit D test, which he reluctantly did (as apparently they are “expensive” and as I now had MS he could justify it). Well, I came back insufficient ( even after my previous supplements). Put on a mega dose for a short period. After this I asked to be tested again, which they did, again, reluctantly. My levels had risen but were only just sufficient. After this I took matters into my own hands, so every year I pay £30 to Birmingham NHS (who do private vit D tests). That way I know my levels are neither too high or low. What all this highlights is the old saying - knowledge is power. I ve always thought that the NHS spends many millions treating people and insufficient resources on prevention.
My comment went off incomplete. So my question was to be "Is the reason the Vit D research never happened because pharma wouldn't want to fund it. It's cheap enough, so they wouldn't be interested. That leaves the charities? Are they interested?
Kit it is the size and duration of these studies that cost a lot of money not the intervention. Sadly goo quality data costs a lot to collect, maintain and analyse, not to mention to get the study participants to remember to take their vD supplements.
Why don’t we use the Vitamin D*Calculator developed by GrassrootsHealth Nutritional Research Institute (GRH NRI) to calculate an intake amount for pwMS?
The chosen target level could be 125 nmol/L.
Jen Aliano from GrassrootsHealth Nutritional Research Institute (GRH NRI) explains:
The majority of individuals do not get enough vitamin D from sun or food alone
https://www.grassrootshealth.net/blog/can-get-enough-vitamin-d-sun-food-alone/,
so most do need to supplement. To determine how much is needed, the current vitamin D level should be measured and a target level chosen. Based on this information, an intake amount can be calculated using the vitamin D calculator here:
https://grassrootshealth.net/project/dcalculator/
Because everyone responds differently to supplementation, re-testing is important after 3 months of the new dose. Many factors contribute to the variation in dose-response, such as those listed here:
https://www.grassrootshealth.net/blog/dose-not-work-everyone/
Vitamin D*Calculator™
Do you know your current vitamin D serum level? Yes / No
Current Weight …………… kg
Current Daily Supplement Intake Amount …………… mcg
Current Serum Level …………… nmol/L
Desired Serum Level ……………. nmol/L
Calculate
© 2020 GrassrootsHealth
The problem in the UK is the NHS is reluctant to pay for multiple vD tests. They say it is not cost effective best just to recommend supplements.
GrassrootsHealth explains 'Why the Same Dose Does Not Work for Everyone'
https://www.grassrootshealth.net/blog/dose-not-work-everyone/
Why doesn't NHS understand?
Do they need a cost benefit analysis?
Yep, nail on the head. Without class 1 evidence it is difficult to convince the NHS of the cost-effective of vD level monitoring and supplementing to a target.
Saying this the vD experts rarely agree with each other so half the problem are the experts.
I take 4000 iu, plus what's in the multi vitamin
Yes, and I increased my 2yr olds amount a month ago when I read what you recommended, and a few weeks later we got covid, so I feel that was lucky timing. All mild cold symptoms for us, btw. I use drops for babies still for her and the older child gets what you recommend in her vitamin and probiotic. I throw a large amount at hubs when he gets the sniffles and that's about as good as he's going to do. Mine is evaluated by a blood level with a goal of 50 (per my specialist, but I think 60 was my last level). I have a good supplement with k2 and a sperta D lamp, neither of which I remember every day, but according to my entries in my D app (Dminder) my estimated blood level there is still quite good. It's a fabulous app that will note the exposure you get in your latitude as well, if you go outside, and it's much less than I expected, even in mid summer here. I think the answer to what dose is, whatever I'm remembering to do is meeting the goal of 50, so I'm good, and blood levels are the way to go for people with MS.
very difficult to find an appropriate form of supplementation for a child at such high strength as the majority of forms at 2000 IU specify its for adults. Does this matter? i dont see my kids eating 5 x peppa pig chewable 400 iu tablets each day but 1 drop of high strength may be manageable
Thank you Gavin, for taking the time out of your busy schedule to investigate and report the effects of vD supplementation in MS. I am one of those you spoke about that have MS and have just being given a diagnosis of Osteoporosis following a t12 spinal fracture. (I would also mention that I went through menopause at the age of 35, which put me at a greater risk of Osteoporosis) So I fully understand the importance of vD both in a MS and Osteoporosis point of view. I currently take 4000iu daily which I put myself on just before the start of the Pandemic as a means of protection. Also encouraged my husband and daughter to take vD for their protection at that time. Since listening to various MS Podcasts about the importance of vD supplementation in the children of people with MS I’ve insisted my daughter takes vD daily to protect her immune system against Autoimmune Diseases including MS, not to mention the protection of her bones against Osteoporosis.
Once again thank you for all that you do for everyone living with MS.
Regards Gill
Here's a question about giving Vit D to children: My son (now aged 10) was diary intolerant as an infant and has had no dairy since. Over the years it as probably become more a dislike rather than an intolerance. I was originally told to give him Vit D since it helps release calcium from other foods (like red peppers?!), and since my GP has not been able to offer me liquid Vit D for him, he's been prescribed Abidec (multivitamins) for years. So my question is, are you aware of a Vit D supplement for children who dislike the tablet or chewy sweet version?
Yes, can get vD drops, which children like.
Thanks for all this information. On the subject of getting Vit D supplements for our children, do you think GPs will happily prescribe them at the levels you suggest, or would we have to buy them ourselves? If we can't get them prescribed, are there some supplements which are more reliable than others?
I take vitamin D3 supplement every day. I also read you should take it with K2. Is that right? Also prices vary hugely. Is there something to look for when buying? I grew up in France playing outside a lot, though it was the north east there was plenty of sun...
Thank you for the information about dosage.
Not aware of having to take it with vitamin K. They are both fat soluble vitamins, but that is no reason to take them together.
400 studies of Vitamin D and Multiple Sclerosis are at
https://vitamindwiki.com/tiki-index.php?page_id=691
Note: Over 20,000 people have been cured of MS with high dose vitamin D
I have posted 150 items on vitamin D at https://hlahore.substack.com
Osteopaenia can reverse, but your are correct it is reported as a z-score or t-score in relation to a normal distribution that is age and sex adjusted.