Vitamin D for MS

What counts as ‘low vitamin D’?

At this festive but dark and gloomy time of year it’s important to think about what else you can do to improve your wellness.  Something which I’ve been thinking of recently with regards to my mums MS is that she has been getting out in her wheelchair less and less due to the bad weather and suffering a few infections.

This got me thinking about Vitamin D again and how much she should be getting and in doing so I’ve researched and got some advice from the MS Trust which I thought I would share here in a new blog post.  At the bottom I’ve put my conclusion but this is something that you will need to check with your Doctor as I am not a medical advisor….just a concerned daughter and mother.

The UK government estimates that a 1/4 of adults and children have less than 25 nmol/l of vitamin D in their blood. During winter this % is likely to be higher.  So as we have 7 in our house, our family is likely to have 1-2 people with low level Vitamin D.

But the thing is even if you have low vitamin D levels you may not fall ill.  Also experts can agree on what counts as the ‘right’ level of vitamin D to be healthy.   Healthy people can vary their levels across the year so it’s a hard figure to state they say.  So there’s some level of ambiguity.

Something as serious as ‘Bone disease’ is the risk if your categorised in the ‘deficient’ category on the table below (from MS Trust) .  So we’re talking rickets in children and ostoporosis and osteomalacia in adults.  Also for MS, there is no specific advice.  So we might all be hearing something different from our GPs or Health Supplement Advisors.  A little confusing I know.  However, there is a general consensus on how much Vitamin D there should be in our blood in the table below.  When you have your next blood test ask for your Vitamin D to be checked and then see where you lie between Deficient and Optimal.  

Chances are that as the Gov stat says that 1/4 of all Adults and Children are deficient you have a 1 in 4 chance of being in that category.  So then we will have another portion lets say another 1 in 4 chance (for arguments sake) of being in the ‘Insufficient’ category.  

Personally I think overall it would make more sense to say that 1 in 2 adults and children have UNHEALTHLY (Insufficient) levels of Vitamin D in their blood.  That figure prompts action and has led myself and my husband (who is a Doctor) to include a Vitamin D supplement of just 400 UI per day.  This is a safe daily dose for all age groups.
 

Optimal  greater than 75 nmol/l
Sufficient  50-75 nmol/l
Insufficient  25-50 nmol/l
Deficient  less than 25 nmol/l

Should I take vitamin D supplements?

Based on the above Gov statistics and where you live and how much you go outdoors it is safe to say that at least 1 in 2 adults or children have insufficient Vitamin D levels.  And so for the first time The UK Scientific Advisory Committee on Nutrition has set a guidance for EVERYONE in the UK to take a Vitamin D Supplement.  So the answer is YES.  This is because in the UK we are not thought to take enough Vitamin D from the Sun due to less sunshine hours etc. and may be dietary related as well as other factors.

Taking a supplement makes it easier to control and quicker to get your Vitamin D levels optimal but you can also consider improving your Vitamin D intake via your diet.  Theres a great little video on WebMD about how to improve your diet in this way.

They say that ‘Everyone in the general population aged 4 and over should have 10 micrograms of vitamin D per day, throughout the year. (This includes pregnant and breastfeeding women and population groups at particular risk of low Vitamin D).’

Infants from birth to 1 year old  should have 8.5 to 10 micrograms per day. Children between the ages of 1 and 4 years should have 10 micrograms of a day. Also those that qualify for the UK Healthy Start(link is external) Scheme can get free vitamins for children and pregnant women.  So that’s definitely worth exploring if you are on a low income.

Recommended intakes (RNI) are based on the amount needed to maintain bone health. 10 micrograms = 400IU.   Which is the daily dose we have started to take.  However if you have MS in order to get the same effect on your 25D blood levels you are likely to need much higher doses.  

What is the highest safest level of Vit D?

The European Food Safety Authority (EFSA) devised a ‘Tolerable Upper Intake Level of 4000 IU (100 micrograms) per day for vitamin D’ in adults and children 11+. This is said to be the ‘highest safest dose’.

However, there are many clinical trials of vitamin D which test at higher levels than 4000 IU and no evidence of harm has yet been found.  Therefore the EFSA Tolerable Upper Intake Level is only a guidance for the general population.  If you have MS you can speak with a medical advisor and opt for a higher dose.

If you take a blood test and your Doctor finds you to be deficient in vitamin D, they may recommend a supplement of 2000-5000 IU per day.  Obviously 5000 IU is higher than the EFSA advice so that demonstrates that the advice in some instances is ignored by the medical profession.  Your doctors aim is to get the levels of vitamin D in your blood up to a level of around 40-60 nmol/l, whilst monitoring blood levels of 25D every 3 months.

Overdosing on Vitamin D and Vitamin D toxicity is very rare but it can happen and so be very careful.  Those taking a very high level of vitamin D as a supplement, should follow a low calcium diet as well. You must cut down on dairy products to prevent calcium building up in the body.  Toxicity from Vitamin D and Hypercalcaemia can cause kidney damage.  So  it’s very important to stay safe.  The best way to do this is to keep checking your blood levels regularly.

Do vitamin D supplements affect MS progression?

YES is the short answer.  Low levels of Vitamin D have been show to affect MS symptoms in some studies because:

  • Having low vitamin D levels could cause your MS to be more active.
  • Having more active MS could cause your vitamin D levels to be lower. For example, you spend less time outdoors when your MS is active.
  • Another unknown factor causes both low vitamin D levels and more active MS, but the two are not directly linked.

Exposure to the Sun has shown to reduce the severity and progression of MS and also lift depression. This implies that increasing vitamin D intake could also help.  But as you can see from my research the advice on how much you can take to remain safe and healthy is mixed.  It seems to me the best way forward is to test your blood levels, take a higher dose to get up to Optimum and then cut back to a regular 400UI Daily dose once your there?  In doing so consult your GP and take precautions with your diet so that if you are on a high dose you don’t have lots of calcium too.  If you are on Free NHS Prescriptions talk to your GP today about getting your Vitamin D prescribed – I think some regions do but others don’t and it may be different in Scotland.  Those with MS may be entitled to it for free and then your keeping your doctor in the loop.  I think it’s best not to just take your health advice from MS Forums where others could be taking and promoting really high levels that you do not necessarily need and which may be more harm than good.  Another good option is to go to your local independent Health Food shop or speak to your Pharmacist.  The Key Message is to speak to a Professional in my opinion.

CONCULSION:  VITAMIN D is VERY IMPORTANT FOR MS PATIENTS.  SPEAK TO YOUR MEDICAL ADVISOR ABOUT HAVING A BLOOD TEST AND CHECK YOUR LEVELS REGULARLY BUT IT MAY WELL BE THAT YOU CAN TOLERATE A HIGHER DOSE THAN THE EFSA 4000 UI DAILY RECOMMENDATION.  ONLY IF YOU MONITOR IT VIA YOUR DOCTOR TO WATCH FOR SIGNS OF TOXICITY AND REDUCE YOUR CALCIUM INTAKE TO PREVENT LIVER DAMAGE WHICH IS VERY SERIOUS. 

IT IS ALSO RECOMMENDED TO GET OUT IN THE SUN AS MUCH AS POSSIBLE WITH APPROPRIATE UV PROTECTION IN THE SUMMER – EVEN IF IT’s SITTING OUTSIDE IN YOUR WHEELCHAIR OR ON A CHAIR BUT IF YOU CAN MANAGE A WALK THIS IS OPTIMUM AS YOU WILL RECEIVE OTHER WELLNESS BENEFITS OF EXERCISE AS WELL AS VITAMIN D.  WRAP UP WARM.  KEEP SAFE.

Have a Happy and Healthy Christmas.

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