Vitamin D

Primary progressive MS
21

Whenever any health professionals say anything that is contrary to the laws of common sense it is absolutely perfectly reasonable to question the advice they are providing. It is your body and you should understand fully the reasons for the decisions that are being made about your treatments.

I repeat, getting an independent 25(OH)D test from a lab such as Birmingham NHS path lab that has a dedicated Vitamin d testing unit may resolve any doubt and show clearly you have attained and are maintaining a 25(OH)D of 125nmol/l and so are obtaining the best anti inflammatory potential from Vitamin D.

There should be absolutely no justification for you not being made aware of your 25(OH)D level or objection to you confirming that following your specialists advice you have achieved optimal safe 25(OH)D status for someone with an inflammatory condition.

Getting 25(OH)D over 100nmol/l enables optimal absorption of calcium from the diet so there should be no further need for calcium from supplements assuming you have adequate calcium sources in your diet (Yoghurt, cheese, milk cream green leafy vegetables, such as broccoli, cabbage and okra, beans tofu nuts bread fish where you eat the bones, such as sardines and pilchards) There are online calculators that add upcalcium intake so you can confirm you are consuming 800mg daily.or use a nutritional database.

In an earlier post I link to the association of excess calcium and cancer, there are other concerns with excess calcium and increased stroke risk. Calcium from food and water is better used than from supplements therefore when people have natural Vitamin D levels they should (providing the diet supplies sufficent) have sufficient without supplement use and more than 600mg/daily calcium from supplements may be counterproductive.

(link removed by admin)

22

What happens if your 25OH(D) levels are up around 400 nmol/l? That’s where I was when I had it measured a year ago. I had been taking 15,000 iU a day for some years. I take much less now.

23

I don’t want to elaborate any further, other than ms isn’t my major concern. The drugs I have to take that are not for ms- 1. Keep me alive 2. Reduce my calcium uptake abilities. 3. The most common side effect is cancer. In particular skin cancer. Oh & reduces life expectancy…blah blah, blah. Need I say more? If I can manage ms to make life a little easier, great. However, I will always do what ever my consultant says. I think we should always pay attention to what we are quite specifically advised. If someone is healthy in other departments, I wouldn’t blame them for going a little off piste. I am sure I would do the same!

24

Hi Sewingchick. Karen… aka Rizzo… posted on EL a month or so back that she had been found to have toxic levels of Vit D3. She had been thinking for some time that her MS was getting worse but apparently too much D3 can cause symptoms similar… weakness etc.

She had been taking 10,000 iu one day and 5,000 the next.

If you click on her user-name (Rizzo) you should be able to find the post. I can’t remember what her levels were.

Good you are taking less now. I’m sticking to the 5,000 iu and hope that will be ok.

Pat x

25

If you look at Karen’s latest posts on her condition you will what I suspected earlier, that her example is extreme and the result of a unique set of problems in her body and so is not a typical example of what normally or commonly occurs when people take the amounts of Vitamin D required to attain and maintain 25(OH)D levels equivalent to those found naturally in humans, living now as human DNA evolved and which are associated with an improved ability to resolve chronic systemic inflammation.

It really isn’t a big deal get a (link removed by admin) prick your finger squeeze a couple of drops of blood onto a sample strip, post it off, wait a few days and then open the email with the results and adjust your daily intake by 1000 iu for each 25nmol/l (10ng/ml) more/less depending on whether you are below/above 125nmol/l (50ng/ml).

You test your car tyres air pressure and adjust as needed, is it such a big deal to do the same for your 25(OH)D so you have optimal Vitamin D3 intake.

26

Thanks Ted. I’ll leave it a couple of months and send off for the blood spot test.

Pat x

27

I take 5,000 ius every other day. I took it daily but after Karen’s scare I decided to lower the amount I took. I think Karen’s were at something like 345 nmols and she feels a lot better since she adjusted the amount she took. I was tested to check my levels which were at 200 nmols which is an increase for me . I was tested after 3 months and i was 137 nmols - this newest test is after a year. Teresa xx

28

Please excuse me venturing onto a forum where I don’t really belong, but my ears were burning!

Ted, what gives you the expertise, knowledge and training to say that I am an extreme example and the result of a unique set of problems? And where have I said this? Please provide a link.

Let’s make it very clear.

As Teresa and Pat said, I was feeling appalling in the last quarter of 2012. My fatigue was very much worse, I was getting increasingly weaker, my walking was terrible, my joints and muscles were more painful, my neuropathic pain was worse, I was nauseous, etc. I assumed that my MS was progressing, very disappointingly as I’d been doing really well prior to this.

Rather stupidly, it was only when all my finger nails broke that I went to the GP’s - after all, MS doesn’t tend to break nails!

A whole host of blood tests revealed everything to be absolutely fine, except my vitamin D level, which was 345nmol/l. Please note, these tests were FREE. There is NO need to pay for any independent testing unless your GP refuses to do the test (which would be very wrong if your neuro is recommending vitamin D supplements). I’ve never heard such a blatent attempt at misleading advertising in my life! Ted, perhaps you should declare your relationship with certain websites, labs and supplements? You DO sell them don’t you??

Long story short, it took me two months to get my levels to under 200nmol/l and, as it has gone down, my apparent progression has reversed: I am stronger, walking better, less fatigued, etc.

There is one factor that might have influenced my levels: there is a small study showing that people on beta interferon have higher vitamin D levels than people not on it. I am on Rebif and, therefore, there is a chance that it increased the effect of the 5,000/10,000iu on alternate days.

However, the moral of the story doesn’t change because I have RRMS and am on Rebif: no one should be popping ANY kind of pill without making sure that it isn’t causing them harm. My neuro tells me that 5,000iu a day is fine, but I will never be complacent again - I will be getting regular blood tests. Via my GP, for FREE.

I recommend that everyone else does the same.

I also recommend that everyone takes a BIG pinch of salt when they read any post liberally sprinkled with links and apparently scientific speak that also includes a recommendation that they spend money.

Karen x

29

Thanks Karen, for setting us all straight.

I’ll ask my GP to test again in a few months… and sooner if I notice rapid progression in symptoms.

Pat x

30

No one needs any special expertise to understand the fact of life that people living in East Africa as Human DNA evolved attain and maintain 25(OH)D levels around the 125nmol/l mark Full body UVB eposure produces 10,000~20,000iu vitamin D3 so human DNA is well adapted to responding to daily intakes below 10,000iu/daily while also getting normal UVB exposure.

I’ve already linked many times to the Grassrootshealth CHARITY that provides up to date evidence based information about vitamin D3. There work study shows typical responses to different daily Vitamin D intakes none of which reached the levels Karen experienced therefore it is simply honest to report that Karens response is an extreme example and therefore there must be a different underlying cause. As Grassrootshealth operate mainly in the USA and USA is nearer the equator than the UK it’s reasonable to assume that their findings would be more likely to show higher responses than would normally be obtained in the UK. If their testing doesn’t pick up extreme responses they it’s less likely that extreme responses would occur in the UK., The fact Karen’s an example of an extreme response (not typical of the majority) reflects either on the accuracty of the test or the sample provided.

And where have I said this? Please provide a link

I said if people read your post they would see you report “a unique set of problems in her body” I think that is a fair summary of your post and I still think your circumstances don’t apply to most people here.

Please note, these tests were FREE. There is NO need to pay for any independent testing unless your GP refuses to do the test (which would be very wrong if your neuro is recommending vitamin D supplements)

The problem with using 25(OH)D tests from your doctor is that you may have to go to the surgery to get a form to take to the local path lab to have the sample drawn and then have another visit to the path lab and a third visit to the doctor to have the results explained. For me it is cheaper (less driving fewer miles and less time) to get the test by post from CityAssays (which is Birmingham NHS Path lab) this department specializes in 25(OH)D testing and therefore they have a greater expertise than most pathlabs in the UK. Therefore their results are likely to be more consistent and less likely to throw up extreme results as your example has shown.

. I’ve never heard such a blatent attempt at misleading advertising in my life!

I am simply explaining where the cheapest most accurate testing can be obtained and where the cheapest supplements can be bought. I am trying to help people as best I can with accurate up to date evidence based information. I’m sorry you aren’t prepared to put yourself out and help others as I do.

Ted, perhaps you should declare your relationship with certain websites, labs and supplements? You DO sell them don’t you?

I have explained several times now that I do try to help people who haven’t access to credit cards by enabling them to buy Vitamin D3 and 25(OH)D tests at the same price you and I can buy them online. If you looked at the NHS Cityassays website you will see they offer 10 packs for £20 each. I always buy 10 and if anyone wants to get one from me at £20 I’m happy to post one to them… I do not understand why anyone finds that objectionable. I only wish that MS society would do the same. It’s not that much trouble to put a test in an evelope, address it and post it out. Surely the whole point of this website is for disabled people to help each other.

I also recommend that everyone takes a BIG pinch of salt when they read any post liberally sprinkled with links and apparently scientific speak that also includes a recommendation that they spend money.

I think most people here are able to follow the links I had provided and will see that the sources I quote are always reputable and evidence based. I object to seeing people ripped off which is why I think it is helpful to point out where the cheapest Vitamins and Minerals can be found. If anyone can point to cheaper sources then I’d be extremely grateful as I like a bargain as much as everyone else. Bear in mind I always post in my own name. I always have. I continue to do so because I know everything I post is scientifically accurate.

If I had ever posted anything that I was ashamed of then perhaps I would have to hide my identity. I’m happy to meet any Local MSers whenever and wherever and share my understanding of the latest Vitamin D science.

31

There are lots of things that I could choose to challenge in your post, but I will stick with the one thing that shows that you know nothing about me or this forum and that has deeply offended me:

I await a full and unreserved apology.

32

Ted, I do hope you are going to retractt what you’ve said and apologise to Karen. She helps more people on the forum than anyone else! Teresa

33

well you’ve effectively shot yourself in the foot there, Ted

34

Good Lord what on earth would we do without Karen on this forum?!

Ted you have indeed shot yourself in the foot!

Pat x

35

I had no idea when I started this thread what a thing I would unleash!

Ted, we are still waiting for an apology.

36

Ive heard Vit D3 is the best type of D vitamin to take, but what if one has enough viamin D in the body already. Would too much vitamin D in the body do more damge than good? Im willing to try the D3 suppliment, but just want to know the facts about it first :slight_smile: Thanks.

37

Hi again Dave!

Generally most neurologists now seem to think Vit D is very good for MS. My neuro advised 5,000 iu (international units) a day… and many others on this forum are taking that dose without bad affects.

One person on the EL board was taking 5,000 iu one day, and 10,000 iu the next. After many months she noticed her symptoms, esp weakness, were getting worse. She had her Vit D tested and it was way too high. So you can actually get up to toxic levels (even though many websites will say that it’s completely safe).

I would say it’s worth going on 5,000 iu a day for say 6 months, and then get the doctor to check your levels.

You can’t get it prescribed on NHS at that dose (and NHS advice on Vit D are considered out of date). Most of us on here buy them from Healthy Origins on Amazon. Can’t remember exact price… but I think it’s under a tenner for about a year’s supply.

It’s a case of using common sense. If you go on 5,000 iu a day and notice symptoms get worse, than obviously go and get tested. There are also test kits available on internet.

I’ve been on the high dose for about 3 months… and I think my fatigue levels are maybe a tad better… hard to say… certainly nothing dramatic as yet, but nothing negative either.

Pat x

38

Ps… read Vit D as Vit D3. Px

39

OK, great. Thanks Pat. Ive got a meeting with my MS nurse next week so i’ll mention the D3. As i said earlier: Im on no medication after nearly two years and keep bringing it up in MS appointments that ineed something to help rather than alcohol. But all they offer me is vitamin B6 & B12. Thanks :slight_smile:

40

Really Dave, at moment mostly all we get offered is for pain for PPMS (if you have pain post again for advice on the different drugs).

We are the ‘forgotten ones’… or were… you will see other posts with some positive news about some new drugs. And have you checked out LDN? Look on ‘LDN Research Trust’ website. I’m not on it but some PPMSers swear by it.

Pat x