Forum

Vitamin D

My vitamin D level has never been checked. I was diagnosed in 2006.

Should I be asking for it to be checked?

Can I buy vit D supplements or is it on prescription only?

You can buy them and get it on prescription. I would get it checked.

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Yes, I would get it checked flowerpot.

I get mine on prescription-don’t pay for mine.

Take care xx

I suggest that you get it checked. I first checked mine in Jan 2014 and I was at 70 nM / l. I started taking 5000 IU per day, and my levels increased to 170. I’m better both physically and mentally. Can’t guarantee your situation is similar, but once you know your level, you can make an informed choice.

I’m having my first biggish relapse (for me) in a while now. I’m not on any dmd’s yet so when I visited the doctor after a quick bit of research, like you do, I realised that I needed mine checked. I saw my gp, who prescribed me steroids for my relapse, I also asked for a full blood test including vitamin D & B12. As it turned out my body was completely deficient of Vitamin D and also very low in folate (B12/9). I’m now taking 20,000 iu vit D twice a week and also 5mg of folic acid each day. Definitely worth getting checked.

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It would be advisable to take the vitamin D at 4/5k iu per day rather than in mega doses. So says my neurologist anyway.

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Get mine from Amazon (Healthy Origins brand) as 2400iu per day. MS Nurse wanted me to double this in the winter.
Last Neuro visit (last August) he called for a set of blood tests, and his letter to my GP commented that my D3 was on the high side - but where he wanted it for someone with MS.

Go along with db9355 on large doses - you can OD on D3, and without regular tests you will never know until it gets critical.

Geoff

Try CityAssays LAb B/ham - they do an excellent postal test for d3. Much more comprehensive then what your GP will do - and you get your results quickly and by email - so you can see for yourself what the level is. We need a much higher level then what our out of date nhs think. The test is just a pinprick blood-spot test.

l took 20.000ius daily for over two years - and yet l still have not got to the levels l need - so far mine is 98nmols. l have started using a vitamin d3 oral spray - its minty flavoured. And supposed to enter the blood stream quicker - whereas the tablets and gel capsules get passed through your system. Vitd3 is fat soluble - and it is best to take it with a ‘fatty meal’.

l shall be interested to see what my next test comes up with.

someone told me,if u take maga doses of vitd3,all tghe body does is get rid through urine,dont know how true,doc prescribded me normal does of vitd3

This is not true as Vitamin D is not water soluble. If you take megadoses then it will be stored in your body.

There are lots of threads, including a really recent one, about the amounts of Vit D that people take and the levels that they want to see. No consensus, I’m afraid.

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Spoke to my uncle yesterday about vitamin D. He’s consultant pharmacist for Nice. He told me, which I didn’t know, that there was a question whether vitamin D was in fact a Vitaminas it’s a natural steroid! I didn’t know that. Maybe why it helps us etc x

I didn’t know that, I got told it is a hormone not a vitamin. Looking it up on the web some people say it isn’t a hormone but acts as a hormone. This journal article title describes vit D as a hormone.

It’s good to know that. thanks xx

I had my bloods checked my Vit D level is 92nmol but no one checked it before I started my Vit D3 capsules. I know above 75nmol is ok but I had been on 2200iunits for 2 Months so am not sure how to translate/ what to do?

Snowqueen x

Keep it up then SnowQueen - you are on your way to a better level. 150/225 is the optimum level we - with MS - need. Magnesium and Zinc also help Vitd3 to facilitate calcium.

l am still stuck at 98nmols.

The most recent studies on this found a J-shaped curve with risks of cardiovascular disease increasing at levels above 115 nmol/L. I’m not saying that 150 - 225 nmol/L isn’t better for MSers, just that there are some risks associated with levels this high.

If you’re going to be your own doctor, you need to find out as much as you can.

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Thanks Sewingchick I have no intention of being my own Dr I was told to take Vit D3 by MS Team and I get it from my GP on prescription. Got my next MS Consultant appointment on the 9th so was just putting my mind at rest that review could wait until then. I am sure my GP will let me know if they were concerned but I just like to have the info myself too as a back up.

Snowqueen x

Hi Snowqueen

I would be proactive with your GP. Mine didn’t know you could overdose on Vitamin D. He was quite happy to prescribe 20 000 ius a day. If it’s not something they come across that often, their knowledge can be a little sketchy.

Anne

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Hi to all - Last year my Neuro wrote to my GP asking to put me on Folic Acid & Vitamin D. Only having just returned from holiday, I had a healthy, glowing and tanned bod. (Not burnt though) He told me he didn’t think I needed Vitamin D, as I get enough from the sunshine. He did however give me a low dose of chewable Vit D and calcium.

A couple of weeks later my MS nurse came to visit. People with MS usually need 4000 a day and suggested a spray, as the sweet, nasty chewables were giving me too much calcium and not enough vit D. The G.P. refused me the spray, too expensive, so bought one from Holland & Barrett (£7 ish I recall) DLUX 4000, then found the same make on the internet, free p&p included for half the price

l use the VitD3 spray - Dlux. lt works better than swallowing the pills. And l do think we should all get our levels checked regularly.

CityAssays Lab B/ham. postal service £28.

On the Barts MS blog Prof Giovannoni advises combined vitamin D and calcium tablets are not suitable. I will try and find the link.