Anonymous 02/02/17
Last reply 10 months ago
Are you Vitamin D deficient?

Are you vitamin D deficient?
Yes, No, Dunno/not tested a simple thread to reply to

Thoughts behind this poll, I’ve been reading shed loads on MS (as well all probably do) regularily popping up is vitamin D,
I was tested & didn’t have any, the Doc’ was so surprised he blurted out I’m suprised you’re still alive – mmm comforting, anyway,
Some theories around the location of MS previlance in the world state MS it’s caused by lack of vitamin D, many others talk about the link with vitamin D & depression, has anyone found a study of MS prevention by checking people’s vitamin D before diagnosis, or even using it a treatment in the early stages, I’m on my second short course of 20,000units & it certainly picks me up.

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1 year ago

Don’t know if I am deficient but take 4000IU a day. I find taking the drops is easier than swallowing a bunch of pills.

1 year ago

No idea meself tbh, as it’s always sunny in Yorkshire I’d find mesen comfussled to have something like that missing other than the cheese off me cracker. Maybe someone is stealing it while we sleep. I may get myself tested tho iv read a lot about vit d and ms

1 year ago

Yep Vit D deficiency been taking 10000 iu for a year now not been re-tested though but there’s a website that does it for about £25 probably need to do that as G.p not that interested.

1 year ago

some interesting dosages popping up

1 year ago

I’m on 4000ui a day also.. low vitimN D is a huge thing with ms my doctor told me. He said usually he would tell people to only have 2000ui a day in the summer but due to me being a redhead I don’t get lots of sun because I burn very easily so he wants me to stay on the 4000 even in the summer

1 year ago

I was when I was diagnosed. I now take 4,000ui a day, aim to keep my level above ‘normal’ and get it checked about every six months. I read somewhere that no one in the UK living north of Birmingham gets enough Vit D. I guess regular caribbean holidays would rectify that but the tablets are cheaper. I buy Valupak ones that are super cheap but do the job just fine.

1 year ago

@hels99 which is a reason why you defected down south then 🙂

1 year ago

I am on 4,000 IU I cut back from 6,000 because of my age, I am 64 and read that 6,000 and up can cause brittle bones in people 65 and older. My last Vit. D test came out average so my neuro told me that was a good dose to stay at. Potter

1 year ago

Hey there,
My neurologist sent me to be tested and after a two month wait I found out was incredibly deficient. I have had a strong course of vitamin D for seven weeks, and now I take 2000 iu a day. I don’t get why I was so low as I go outside everyday and I eat foods that is supposed to contain vitamin D! I even used to take a multi vitamin which was suppose to contain it.
I would be interested to have another test to see if my levels have actually increased!

1 year ago

Hi all – now you have all got me thinking. Like most I don’t think I am Vit D deficient but I just don’t know. When diagnosed with MS last yr my MS nurse suggested a daily dose of 5,000iu D3 which my doctor approved. I certainly think the taking has contributed to my well being but as we all know Vit D is not water soluble and can be stored causing potential hypercalcemia. Thanks for all your comments I will be contacting my GP requesting a blood test.

1 year ago

Prof Giovannoni on the Barts blog recommends a 5,000iu daily dose for Msers. I have this on prescription and have recently started taking a vitamin K supplement, on the recommendation of my dentist. The vitK helps direct the vitD into the bones and helps to prevent hardening of the arteries. You can get a combined tablet.

1 year ago

I too have tried to learn about the possible connection between VIT d and ms .
Last November I decided to take matters into my own hands because :

Since 12 yrs ago, I’ve had to stay out of sun , not because I don’t like it, but because I developed temperature intolerance soon after birth of my 2nd child, ( I didn’t know it was called that then , but it has since been diagnosed )
so relating to VIT d, I haven’t been getting sufficient vitamin d from the sun 4 the last 12 yrs

Also depending on where u are located in the world, in relation to the equator , this too determines if you are even able to get sufficient from the sun alone , here in the uk , it is not possible to obtain enough from sun from around end sept thru to possible end April, even if you were naked it would not give you enough.
So your skin color is very relevant , the darker your skin , the more natural sun you would need to get enough.the lighter your skin color the less you need to obtain same amount of it.

I also read in various places ,that when you receive a diagnosis of ms , that you should have your VIT d levels checked , since I also read that it’s often found that we have low VIT d.

How much do we as people with ms actually need , seems to vary , depending on who answers this .

I found the website very I formative.
It defines what your blood level for VIT d is and which ‘ group ‘ that puts you in , in terms of deficiency ,but very helpfully how much to take to achieve chosen level .

So it starts with the lowest level 0-10 nmol/ l classed as deficient by all organisations and it increases from there.

From personal experience , my consultant never requested for my VIT d level to be checked & neither have any of the numerous gps that I’ve seen at my present surgery ( that would be about 10 different gps )

I felt this was illogical that my level hadn’t been checked , so I requested it last Nov…no surprise I come in the 2nd from lowest group ,yet the GP defines it as insufficient , but not deficient , yet maybe for someone who doesn’t have ms !

Also they casually said oh, just take 1000iu per day, yet that is way less than the vitamin council recommends or from what I see other people are advised to take .

Also It’s known that your calcium levels may be affected if you have low VIT d, yet the GP didn’t request this to be checked …only because I happened to see a different GP a few days later , I took the opportunity to inform him of my VIT d level & he said he wanted my calcium level checked … No surprise it too was low & I now have prescription for the calcium .
Maybe it was because this 2nd GP had already discovers I had osteopenia in 2012 , but hadn’t requested the VIT d / calcium checks then ,when it looks like this should have been done .

We shouldn’t need to repeat ourselves, Yet I have learnt that you need to , because u get told different info by different Drs/ consultants & important things get missed very easily .

Also from 1-2 days after starting takin VIT d , persistent ankle pain I’d had since early summer suddenly stopped , I think it was bone pain , around much of ankle ,extending into foot area & up shin area, didn’t feel like muscular or nerve pain.

It seems that if you take higher amount , it can elevate your level faster & then you can drop down to a lower dose
I imagine it would take a long time to even elevate my levels to level recommended for ms people,if I only take 1000iu daily vs 5000iu or more .

From what I read it states that ‘ most’ people are ok with levels around 50nmol/l , but that isn’t necessarily sufficient or recommended if you have ms, higher level seems to be recommended ….

How are we meant to know ? I feel I’m left to guess… Other people’s knowledge and experiences and advice they have been told would be really appreciated !

1 year ago

I have been taking 6000 to 7000 Iu in the winter 5000 in the summer. I am located in Ontario, Canada and the winters here really know how to suck the fun out of going outside. I initially tested low when I was first diagnosed with Ms I should go back and take a look at those levels now.

1 year ago

Hello, I am new here. I came specifically to see how people with MS are doing with Vitamin D supplementation. I began having neurological symptoms about 15 years ago. Had a brain MRI and they found white spots. My first neuro said, no MS, it’s myelitis. Treated me with high doses of steroids. Went for a second opinion, that neurologist said yes MS but wasn’t taking patients, just doing diagnostic work? Told me to go back to the first neurologist and tell him I wanted on MS drugs to keep from getting worse. First neurologist refused and insisted on myelitis. Have seen about 4 more neurologists since. Have gotten four more diagnoses (migraines, TIA’s, vasculitis). The most recent one also said, no, not MS, spots are not in the right place. Maybe it was a one-time demyelinating disease. But it has not progressed. Thankful for that. Problem is summers really wipe me out. Good thing I’m a teacher and don’t work in the summer. Bad thing is I’m a private school teacher who doesn’t get paid for summers. So, I often do TRY to work. But it’s tough. I have trouble learning new routines. I’m tired, weak and foggy until about October. My neuro decided to do a Vitamin D level on me. I came back very low. She put me on a 50,000 iu dose once a week. The first night I took it, I felt like I’d been poisoned. But the next day, I felt a surge of energy and clarity! And so I have been taking that dose once a week since. I am noticing improvement in a lot of my symptoms. So…I’m back to wondering if what I have is actually a one-time MS episode which my neuro says can happen. Just wondered if anyone else here feels the Vit D might have “cured” their MS. I will probably have to wait until summer to see how that goes. Thoughts?

1 year ago

@sunsetlover , it is more than possible for your symptoms to have been caused by a vitamin D deficiency.

Doctors are loathe to make a diagnosis of MS until strict criteria have been fulfilled. This is a good thing, as a label of MS stays with you for life. A single demyelinating event can attract a variety of terms, until another demyelinating event occurs.

It would be worthwhile considering a further MRI scan after 12 months, to ensure that no progression/deterioration is identified.

As you can see from the comments above, Vitamin D deficiency is to be avoided with MS and could in fact have a part to play in all manner of other conditions.

So, can Vitamin D supplementation cure MS? We wish! But, it can help relieve some of the symptoms of MS.

1 year ago

Thanks for your reply @stumbler. Yes, I have had repeat MRI’s and the most recent one was just last year. The neurologist says my disease is stable, no changes. I guess it will be a mystery until an autopsy can say what really happened. 😀 And I’m okay with that as long as I can function until that has to happen. Perhaps I should look into Vitamin D deficiency symptoms. I always thought the main symptom of Vit D deficiency was rickets.

1 year ago

top ten symptoms of Vitamin D deficiency

Weight gain
Bone softening (low bone density) or fractures (Rickets)
Fatigue and generalized weakness
Muscle cramps and weakness
Joint pain (most noticeable in the back and knees)
Blood sugar issues
Low immunity
Low calcium levels in the blood
Mood changes and irritability

sound familiar don’t they

1 year ago

Almost all MSers are vit D deficient!!!! I take 5000 units a day. I also take calcium because low vit D often causes issues with calcium absorption and I’m menopausal(!!)

NB, I have been tested as low on vitamin D, and my MS nurse is in the habit of retesting all the Tysabri patients along with FBC every 3 months, so if you haven’t been taking you get told off!!!!!! lol

1 year ago

I had very low levels when I was diagnosed and now take 5000iu daily. I’m not sure if they’ve retested my levels since, I’ve had so many blood tests I lose track of what they’re all for.

1 year ago

Hello again , I just wanted to say that in my other post above , I incorrectly referred to the measure of our VIT d in our blood as bi g measured in nmol/l ( because I didn’t check ) but infact this measurement is used in the uk & the other measurement ng/ml is what is used in the us & the is a great us website .
So if u happen to be in the uk, you will most likely be given your result in nmol/l vs ng/ml .
The difference is that on that website , the wonderful charts use ng/ml , so what you need to do to convert your uk level is divide your number by 2.5 , eg I have 44 nmol/l ,which divided by 2.5 = 17.6 ng/ml ….doing this told me ALOT more info than my GP .
It sis known that our calcium may be low for we have low VIT d & the importance of this , is that our bones need to be as strong as possible , because of our increased risk of falls and fractures .
It is also known that VIT d level may rectify low calcium , once the VIT d level is corrected.

10 months ago

Hi all. Well, thanks to this stream of thought and informative postings, I asked my GP to test my VitD levels (2 and 3) and they have come back as 150.4 just over the recommended max level. I currently take 5,000 iu daily as suggested by my MS nurse but was never tested initially. So now I am thinking should I stop, lower the dose level (although I have a shed load of stock!) or take them periodically now that the sun is starting to shine in the UK. I certainly think taking the tablets have helped (I also take cod liver oil high strength which contains Vit D) … damned if we do..damned if we don’t. Thoughts peeps?

10 months ago

@knotty , we should get the required amount of D3 from natural sunlight, which is obviously easier in Summer than Winter. It is said that we just need to sit in the midday sun for 15 minutes to obtain the required dosage.

So, the question is, are we in danger of extracting an overdose from natural sunlight in Summer?

Rhetoric aside, it would seem reasonable to lower your supplement, when the Sun is available. You can always resume the supplement if you start to feel the need for it.

Definitely a case of damned if we do, damned if we don’t!

10 months ago

@stumber the oracle! Totally agree and saw my Neurologist this am and he also agrees. So I will not take them until the sun stops coming out to play


10 months ago

10 months ago

@lucyh , when a username is displayed as “anonymous”, it means that the person who made that comment is no longer a member of this forum.

When it is a member, who made genuine posts, without breaking the Forum House Rule, then they’ve deleted themselves.

10 months ago

Brilliant, thanks for explaining that…sleep well, lucyh xx

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