Want to lower your risk of Multiple Sclerosis symptoms and relapse? Take vitamin D. A lot of it. That’s basically been the message to the MS community for years.
So we stocked up on our supplements and took ‘em daily.
But now recent research suggests that this may not be true.
Two studies concluded that high doses of vitamin D did not significantly reduce MS disease activity.
But before you toss out your vitamin D bottles, let’s dig a little deeper into the details.
Just a reminder, this discussion is for informational purposes only, it is not medical advice. Please continue to work with your doctor for all your medical needs.
Vitamin D and Multiple Sclerosis
I don’t know about you but I’ve always viewed vitamin D as the easiest – and quite honestly the cheapest strategy to manage Multiple Sclerosis.
It couldn’t stand alone as treatment for us, but it was like an extra layer of protection.
And it was something that both conventional and functional medicine agreed upon, which is no small feat.
They said things like…
“Low vitamin D levels were associated with higher rates of relapse, more severe disability, more brain atrophy and higher rates of many chronic health problems.
Whereas higher levels of vitamin D were associated with higher levels of function.
And really this wasn’t just within the MS community, low levels of vita D were associated with higher rates of autoimmune disease and even mental health, cardiovascular disease and even cancer.
Those pretty substantial reasons to take that small supplement that’s relatively inexpensive.
One important message that has always come along with this and I have shared many times with my community is to have your personal vitamin D levels monitored by your doctor.
Personally I try to aim to get mine tested about twice a year.
This helps me to best understand exactly how much I should be supplementing.
When I was first diagnosed with MS my vitamin D levels were in the gutter!!!
My level was 11, that’s insanely low.
So with my doctor’s recommendation I took high doses of vitamin D and now I average around 50 which is really good.
The Standards for Vitamin D
The “average” range for vitamin D is often between 30-70.
But many functional medicine practitioners feel being on the upper end of this or even a bit higher is optimal.
It’s important to get your specific levels tested though because vita D is a fat soluble vitamin which means that your body doesn’t have the ability to just flush out excess vita D if your levels get too high.
Water soluble vitamins like vitamin C or the B vitamins just flush out through your urine if you have too much.
But fat soluble vitamins are stored in the body.
Now I have never met or heard of anyone who has had too high levels of vitamin D, but it’s just smart to get your levels tested so you know exactly how much to supplement.
Okay, I wanted to set the stage for us about vitamin D so now let’s dive into these studies.
There were two studies – one in the US and one from Australia-New Zealand.
Johns Hopkins Study: Vitamin D & Multiple Sclerosis
The U.S. study, conducted at Johns Hopkins University, explored the difference between high doses versus low doses of vitamin D in individuals with relapsing-remitting MS.
Relapsing Remitting MS is the most common form.
It’s what I was diagnosed with and I know many of you were as well.
So we have relapses or flares – times when we experience symptoms that can last for days, weeks or even months – followed by remission – times when the symptoms go away.
Johns Hopkins University was trying to determine the difference between high vs low doses of vitamin D in individuals with RRMS.
After 96 weeks, among 140 participants, high-dose vitamin D supplements didn’t show any tangible reduction in MS activity.
And that includes both relapses and MRI-detected brain lesions.
I unfortunately didn’t find more details beyond that but I’m curious to know the doses that they used and what was the baseline level of vitamin D in the average participant.
It feels like a pretty broad statement to make without those details.
I’m also curious to know where these participants lived – did they live in sunny environments or did they live in an overcast area.
Personally, I’m just not quick to dismiss the value of vitamin D based on this study.
Now, let’s move onto the Australia-New Zealand study.
Australia-New Zealand Study: Vitamin D & Multiple Sclerosis
This trial was to determine if any dose of vitamin D could delay the onset of MS in people diagnosed with clinically isolated syndrome (or CIS).
If you’re not familiar with CIS, think of it as like a ‘first warning’ or the preliminary stage of MS.
It’s basically a neurological “episode” which may involve symptoms like numbness, tingling, visual disturbances, or weakness, and last for at least 24 hours.
You may or may not have detectable lesions on an MRI.
You’re typically monitored by a neurologist to see if you have any more episodes.
If you don’t have another episode, it’s just classified as CIS – essentially a one-time occurrence.
If you experience additional episodes over time, it could lead to a diagnosis of MS.
So this study was trying to see if any dose of vitamin D could delay the onset of MS in people diagnosed with clinically isolated syndrome (or CIS).
After 48 weeks, there was no significant difference in the number of participants who went on to develop MS, regardless of the vitamin D dosage they received.
Again, that’s super disappointing!
I always saw vitamin D as one of the low hanging fruit to managing MS.
It’s a small and really cheap supplement.
But again, before we stop taking vitamin D all together, we have to recognize that these studies don’t answer everything.
The participants didn’t have severe vitamin D deficiencies at the beginning.
So, we’re left wondering: would someone with a significant deficiency benefit differently from vitamin D supplements?
As I said earlier, when I was diagnosed with MS my vitamin D level at the time was 11. That’s insanely low. It’s now 50. And can I definitely say that I not only feel better but MS is obviously more stable now too.
Now can I say that’s directly related to the vitamin D levels?
No, a lot of other things changed during that time too.
However, I know that I spend a tremendous amount of time indoors so I get so little exposure to the sun to make vitamin D naturally.
And especially now that we’re going into the winter, it’s important to remember that vita D levels can also affect our mood – specifically seasonal affective disorder – when you feel more sad in the winter because you’re spending so much time inside and not getting any sunshine.
The Sunshine Factor: Vitamin D Multiple Sclerosis
And I’ve actually been part of conversations on research that’s going on right now to see if the key factor is that we get vitamin D from the sun versus supplements.
Because we know that there are lower rates of MS in areas that are closer to the equator.
The further away you get from the equator, the higher the rates of MS.
In areas near the equator, MS occurs in fewer than 1 out of 100,000 people.
In areas farther from the equator-such as northern Europe and northern North America-MS occurs in around 30 to 80 out of 100,000 people.
Because what happens around the equator?
You get more exposure to the sun.
So the initial thought was that it was connected to vitamin D and a supplement would be just as effective as the vitamin D that our body makes from the sun.
But what if there’s more to the sun than just vitamin D?
It’s the same concept as trying to extract one nutrient from a food and saying that you’ll get all the same benefits of eating broccoli by just taking this supplement. We know that’s not true because food is dynamic. It offers multiple nutrients that work together to provide your body with maximum benefits.
Turns out the sun might be the same.
We can’t just take a supplement and call it a day.
We do actually have to spend some time in the sunshine.
Heat Intolerance with MS
Now as someone who has a heat intolerance, I’m right there with you saying, that’s great but how can we get sunshine without suffering the effects of the heat?
Well, my friend, like everything with MS and health in general it’s a balance.
Personally I try to go out in short increments and I obviously don’t go out on the ultra hot days.
Another thing that I find helpful is being out with the water – be it the ocean or a pool – to help keep my body cool.
And lastly, I really try to be intentional about being out on cooler days when I know I’ll be more comfortable.
Vitamin D and Multiple Sclerosis: The Choice is Yours
So where you go from here is a personal choice, and one to discuss with your doctor. Because the reality is the messaging to us about vitamin D and multiple sclerosis is mixed.
These two new studies suggest that vitamin D might not be the holy grail of supplements like we were originally told.
But it doesn’t mean that we completely discredit the supplement or the natural source of vitamin D – hello sunshine!
Personally I’m still going to check my vitamin D levels with my doctor – probably twice a year – and still maintain healthy levels.
What are your thoughts on this study?
Will you continue taking your vitamin D?
Share in the comments below.