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Hi. I am pretty new to all this so I have a question which probably seems a bit basic. Apologies. Anyway, I don't know what my vitimin D was at diagnosis but I recently had it tested and it was around 170 plus. I was told this was high and that I need just to take around 1,000 iu a week, whereas I had been taking sometimes up to 9000 a day. I stopped taking any for a couple of weeks because my level and the amount I had been taking seemed to shock the GP. I know OMS advocates much higher levels than most countries' health authorities so I want to start taking it again - I am just not sure how much. What sort of amount would it make sense to take each day given my level when tested? Thank you for reading!
Diagnosed - June 2017.
OMS - January 2018.
Hi! You didn’t give units but if you’re using only supplementation I’d think 9,000iu is very reasonable for winter. Here are my notes on D. If anyone sees any issues I’d appreciate the feedback. Be well, everyone!

Vitamin D Goals
~150 nmol/L (~60 ng/ml) blood level (2.5 conversion)
~200 nmol (80ng/ml) may be optimal.
This will require supplementation unless you live in the tropics.
Summer: At our latitude (~40 North) 10-15 minutes of sun on most of body 3 x week should do it.
This amount of sun does not increase skin cancer risk.
Have to do blood test to learn exact numbers but a good starting place is:
Winter 5000-10,000 iu daily
Summer 2000-5000 iu daily
So, if your units are nmol/ml I’d say you’re doing well.

And although I’m not in medicine I think you’ll find the evidence is stacking up that the historic recommended D levels were far too low.

Nice work!
Thanks. The figures are n/mol and as we get little sun in the UK at this time of year I use only supplements for VitD. I am just unsure if I should keep supplementing if I am already at 170+n/mol (or was a few weeks ago)?
Diagnosed - June 2017.
OMS - January 2018.
170 is fine, I would probably try to get it a bit higher. I aim to keep mine at around 200.
You will need to keep supplementing to keep the levels stable, if you stop it will start to fall quite quickly I believe.
The only way to find the daily dose to keep your levels reasonably stable is to have your levels tested.
Most people seem to have there levels tested a couple of times a year, I had mine done more often at first so that I could work out my daily doses.

Here is a link to a thread where I have posted my levels and dosing over a period of a few years.

Hope this helps

BG
Thanks bannrikae. I have started supplementing again but very cautiously as not sure how much to take - you are right, I will just need to get tested again regularly for a while. I don't think my GP will be open to doing that on a regular basis though as he doesn't seem to believe in the Vitimin D theory so I will need to get this done another way. Is there a particular place that you would recommend? I have a note of a place in the Midlands that you send to but not sure if that is the best/only place.

Thank you re the thread you mentioned. Could you re-post it if it is not too much trouble? I don't have it on your comment for some reason. Sorry!

But it is good to know that I need to continue supplementing to some extent. I wasn't sure if once your level was acceptable you just stopped - now I know!

Thank you again.
Diagnosed - June 2017.
OMS - January 2018.
Ah, stupid me, I have a habit of leaving the links out :)

viewtopic.php?f=7&t=7632

Here is a link (if I remember :lol: )to the place that most people seem to use for Vit D testing

http://www.vitamindtest.org.uk/

BG
Hi

Jus to add my twopenneth to the Vit D testing conversation. I have successfully used the online home test on one occasion.. Be aware that the results won't be 100% accurate, as the lab will be testing a dried blood spot. My test illicited a concerned call from a nurse in Birmingham, who was concerned that my levels were above the 'recommended' levels. I explained that I was following OMS which seemed to placate her somewhat, as I clearly wasn't the first persn to mention OMS! (Hurrah!).

I tried to do another home test recently, but failed with both needles. Either my fingers have got too skinny, or I should have got someone to assist me with it. I would recommend getting a friend to help so you don't waste the test, as I did.

Having said this, it would appear that my Neuro is getting on board with the whole Vit D thing now. When I was last at the hospital, he asked if I was supplementing which makes me think that they would give me a Vit D test if requested. It might be worth raising this with your own Neuro or MS nurse? GPs aren't quite as au fait with it all, in my experience, and as blood tests cost, they are reluctant to test unless they can see an obvious need.

I am in the rainy UK too, and currently supplement with roughly 10,000iu per day.. Your body doesn't store Vit D for long, so you do have to keep topped up.

Hope this helps.

Rachel
Thank you for the links, Bannrikae.

Rachael77, I will keep that all in mind. My GP did the initial VitD test no problem but I don't think he would want to be arranging that regularly somehow, especially as he is not convinced, or so it seems, that there is a causal link between MS and Vit D. The neurologist has never said much on the subject but when I told him once that I had been taking doses of up to 10,000 he replied, 'You mean a week, right?'. He said they give slightly less than that a week in supplements to some patients - MS patients, I presume. But how/why some people are given this I don't know when they never test Vit D anyway - at least they have never tested me. They don't seem to have a policy on it ... and perhaps just give supplements to someone who asks for a test and is below the NHS lower permitted level (very low indeed).
Seems like I will have to do a private test but maybe enlist a friend to help, as you suggest.
Thank you both.
Diagnosed - June 2017.
OMS - January 2018.
Don't be surprised if you get differing views about the MS/Vit D link, even from MS professionals. Although OMS has been supporting this idea for many years, it is only just seeping into the mainstream UK MS treatment. I had been following OMS for several years before one of my neuros casually mentioned Vit D, and the other neuro literally mentioned it a couple of months ago. I have had MS for almost 10 years and at no point have either of them tested me.

The test is very easy to get online and there is plenty of support here if you can't get answers from your doctors.
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