In recent years, testing and supplementation of the ‘sunshine vitamin’ has become of great interest to neurologists and those of us with multiple sclerosis.
It’s easy to see why.
MS has been linked to vitamin D deficiency – both as a risk factor for disease development and following diagnosis. People with MS also have an increased risk of fracture – due to falls. So it seems reasonable people with the disease should be getting enough vitamin D.
Except some are not.
“Our experience is that almost all MS patients who are not supplementing with vitamin D have insufficient, if not deficient, levels,” according to Dr Ruth Dobson, neurologist at Queen Mary University and co-author of a 2017 BMJ article on the vitamin.
Vitamin D is unique among vitamins because we produce it ourselves – when our bare skin is exposed to the sun’s rays. This worked for our hunter-gatherer ancestors, but is more of a challenge today as many of us work inside.
Another factor is that many of us live in northern latitudes. This means from October-March, the sun’s rays don’t contain enough ultraviolet B (UVB) to allow our bodies to manufacture
vitamin D. And no – using a sunbed is not the answer as many do not use UVB, says Prof Gavin Giovannoni, Professor of Neurology, Queen Mary University.
As for getting vitamin D though our diet? Unfortunately only a few foods – like oily fish and egg yolks – contain it and only in small amounts.
So that leaves taking vitamin D supplements – which thankfully are cheap and have a low risk of toxicity.
But how many should we take every day? And what is the optimal level of vitamin D we should be aiming for?
In hopes of guidance, I asked fifteen MS neurologists from the UK, Canada, US, Europe and Australia a series of questions:
- Do you test your MS patients for vitamin D? If so, on diagnosis – or periodically?
- What is the ideal range you would like to see?
- When would you suggest re supplementation – and how much per day?
- Does this vary if the patient is Black/Hispanic, Asian or First Nation people (Canada) – or if pregnant or looking to become pregnant?
While their answers varied, none suggested a different dose depending on a patient’s race/ethnicity or if pregnant. However Dr. Dobson did suggest women with MS looking to start a family should ensure they start taking vitamin D prior to conception.
Also worth noting it is the measurements for vitamin D levels are in nmol/L – not ng/mL (the measurement used in the US). The dosage is in IU – International Unit and that the type of vitamin D to take – is vitamin D3 (cholecalciferol) – not vitamin D2.
Dr Khaled Abdel-Aziz,St George’s and St Peter’s Hospitals, England -tests on diagnosis and supplements all patients with 4,000 IU daily. Looking for upper end of normal – 75-100 nmol/L.
Dr Aaron Boster, the Boster Center for Multiple Sclerosis, Ohio – tests on diagnosis and once annually during the winter. Aims for a blood level of 50-100 nmol/L. Advises taking 5,000 IU or in some cases 50,000 IUweekly.
Prof Alasdair Coles, Cambridge University- tests on diagnosis and looks for a result greater than 50 nmol/L. If below, suggests a loading dose and then 800 IU a day. Encourages exercise outdoors throughout the year to get sun.
Dr Ruth Dobson, Queen Mary University of London – recommends 4-5,000 IU per day, or 10,000 IU on alternate days. Advises testing for vitamin D several weeks after starting daily supplements. Likes to see a level >75nmol/L but not greater than 200nmol/L.
Prof Gavin Giovannoni, Queen Mary University of London – advises dosing of 5,000 IU per day based on the Vitamin D Council’s advice and likes to see patients on a level above 100 nmol/L all year round, but not greater than 250 nmol/L.
Dr Sharmilee Gnanapavan, Queen Mary University of London – tests at diagnosis. Recommends 4-5,000 IU per day – regardless of vitamin D level as believes it has an anti-inflammatory role to play in MS. Looking for a level greater than 50 nmol/L.
Dr Orla Gray, Ulster Hospital, Northern Ireland – does not routinely test; advises treatment to those who are happy to take. Normally suggests 800 IU per day.
Dr. Niall MacDougall, Queen Elizabeth University, Scotland – “I never test as without supplementation I don’t think I’ve ever seen someone in Scotland with a ‘normal’ level and it’s an expensive test.” Advises patients to take 4-5,000 IU daily.
Prof Ruth Ann Marrie, University of Manitoba, Canada – helped write vitamin D guidance for the MS Society of Canada. Advises patients to take 2-3,000 IU a day and tests four months after supplementation starts. Aims for a level of 50-125 nmol/L.
Dr Joost Smolders, Erasmus University, Rotterdam – tests on diagnosis. Repeats only if patient is at risk of very low vitamin D levels due to very active disease, African/Mediterranean ancestry, limited sun-exposure (clothing/ culture-wise), high level of disability and old age. Looking for level above 50 – closer to 100 nmol/L ideal. Dosage varies from 1-4,000 IU.
Dr Stephen Krieger, Mount Sinai, New York- tests on diagnosis and occasionally after. Likes to see patients in 50-70 nmol/L range. Suggests 3,000 IU per day and then tests to see if it is sufficient.
Dr Emma Tallantyre, Cardiff University, Wales – tests most patients and aims for a range of 30-50 nmol/L – though ideally above 50. Suggests everyone – unless they are on calcium supplements – take 4-5,00 IU a day. If patient is already on 1,000IU per day and levels are adequate – greater than 50 nmol/L – then no dose increase.
Dr Benjamin Turner, Queen Mary University of London – tests on diagnosis but not routinely after. Advises patients to take 2,000 IU a day and likes to see a level no greater than 200 nmol/L.
Dr Anneke van der Walt, Monash University, Australia – tests on diagnosis and then annually due to Australian Medicare constraints – but finds this sufficient. Happy with a range of 75-150 nmol/L and usually recommends 1,000 IU a day.
Dr Wei Yeh, Monash University, Australia – test at entry to clinic or on diagnosis. Suggests dosing at 1-2,000 IU daily, but guided by initial vitamin D level. Aims for a vitamin D level of at least 75 nmol/L.
Remember this is guidance only. It is worth checking with your GP or neurologist first.