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.

So MedDay have decided against pursuing a licence for their ‘patented’ high dose Biotin.  See Multiple Sclerosis Trust post and letter from MedDay to the European Licensing Agency.  I don’t see a viable reason for pulling out as they already stated that further testing was required and the pharma usually fight for approval if they feel there is money to be made.  We know that many patients found benefit but that not all participants benefited.  That is the expected outcome for all drug trials and so I feel we are left in the dark about the real reasons.  On a good note they intend to pursue the Phase III trials but I suppose cancelling those would be a media nightmare and very damaging to the brand name?  Call me a cynic but that’s the truth of it.

 

Personally, I have always struggled with the fact that MedDay were/are patenting an already available organic Vitamin product.  Just because the recommended dose is higher does not change the fact that the product already exists.  How much a user takes is up to the user as it is their diet.  Much like any food no one can tell you how much to take.  Anyone that has searched for high dose Biotin can vouch for it’s existence.  Personally I sourced my mums supply from a US company and ordered it directly online.  And I know that there are other suppliers out there.  You can find high dose Biotin on Amazon and on ebay.  Although invariably the suppliers can be out of stock and you need to wait longer or pay import taxes etc. which can be off putting.  But you can source the product and it exists.  Might it therefore have been a difficult task for MedDay to obtain a patent based on their ‘novel’ product?  Or perhaps they have opened their eyes to the fact that high dose Biotin is already on the market and therefore any ‘big money’ expectations will not be materialised?

 

The nuutree brand was set-up on the back of my struggles sourcing Biotin for my mums PPMS and so I spotted a gap in the UK market.  So whilst yes, the intention is to grow a money-making brand, we are meeting a genuine need from UK consumers and are not claiming to be novel in any way.  Our R&D has been extensive and I have personally exchanged many emails with over ten manufacturers of high dose pharma grade pure Biotin from all over the world and scrutinised their production and manufacturing processes.   We care about our product and our customers and hope that once our Food Business Operator Licence comes through we can make lives easier by being an accessible brand with high quality products and quick UK turnaround.  I am proud to be the founder of nuutree as it is the kind of caring company that I wished was available to me and my mum when we wanted to trial Biotin in a higher dose here in the UK.  Whether it works or not, there is nothing else to try in mum’s diet and no medication on the horizon for her late stage PPMS and so we will see if Biotin offers any relief.  As per my previous blog post neurology specialists are recommending it to their patients and there are Phase III trials underway so why not do our own trial? Mum has nothing to lose by trying she feels and as her family we back her in that choice.  Here here for freedom of speech and diet!

above image courtesy of Gavin Clarke at Visual.ly

nuutree’s high dose Biotin will not make any claims to alter disease or improve specific symptoms or health in any way.  nuutree’s high dose biotin, Biotin100, is intended as a supplement to users diets and the onus is on the user to intake food and supplements to their diet which they believe to be beneficial.  Again, this is your freedom.  Of course, we always recommend seeking medical advice and speaking to family and friends before adding our products to your diet and to undertake independent online research.  There is a lot of information out there.  We have our fingers crossed that no other legislation gets in our way and if so we’ll be online taking sales on 7 February, our new launch date.  Our work and research as a brand is intended to help and not to become a big fat cat in the process.  Indeed when we are up and running we will be looking at how to offer value added services and cost savings to regular customers.  We will also be looking to donate a percentage of profit towards a UK charity which supports disadvantaged or marginalised members of our society.  Being ethical and doing what we can to improve the life chances of others is part of the nuutree brand vision.  We look forward to writing more about our charitable donations prior to sales going live so that you know about the good work being done by nuutree and our customers.

Above image courtesy of www.quotefancy.com

On a final note I think it is a good thing when large companies decide to just leave the world’s organic and natural resources to be as they are.  It’s only right that they try not to label them as something new or novel.  Albert Einstein’s above quote emphasises this fact which also holds true today in 2018 as much as when he uttered those famous words almost 100 years ago – we still do not know one thousandth of one percent of what nature has revealed to us.

Perhaps MedDay are good guy’s after all and also saw this as the case?  Whilst they uncovered something new in terms of dose V benefit, they did not manufacture a new product.  Mother nature gives us ALL these ingredients and these naturally occurring materials are the basis of many natural medicines and vitamin supplements that help the human race fight disease; ageing; health conditions; diet problems etc etc.  Yes, we rely on companies to extract natures produce for us, package it up and provide us with good service but Mother Nature is often the real ‘manufacturer’.  My hope is that while mum starts her high dose Biotin trial something else will come to the market which stops her degeneration further or boosts the effects of her Biotin supplements to slow degeneration and promote Myelin regrowth more or faster or anything, not just always worse, always more bad news.  Mum is a remarkable lady, facing a horrible existence at EDSS 9, effectively trapped in a body that will not work at all anymore.  As a family we are all trapped in this horror story with her but she is the sufferer.  She is only just 61 and can now only move her head.  Mum’s brain is often as sharp as a knife, she’s switched on and has a wicked Irish humour that often raises eyebrows and brings tears to all of our eyes.  And then at other times we are in tears due to the harshness of it all.  If vitamins and diet supplements can offer even a little benefit and some tiny glimmer of hope towards a better future then that is what she will want for herself and other sufferers and that is what nuutree will provide.

Please email info@nuutree.net to make an enquiry or register your interest.

 

https://www.mstrust.org.uk/research/research-updates/update161206-MD1003-for-prog-MS

What does this research mean?
Results suggest that high-dose biotin may cause a reversal of MS-related disability in a some people with progressive MS. Although the numbers of people involved in the initial study is relatively low, making it difficult to draw firm conclusions. The data is complex and will require more detailed analysis to draw further conclusions or identify those most likely to benefit however initial findings give hope for some MS patients.

Biotin for MS symptom relief has good results. If you want to try high dose Biotin in the UK please get in touch. Seek medical advice prior to starting high dose Biotin for MS symptom relief.

Many sources and medical research has shown High Dose Biotin (pharma grade) improves and benefits patients with Multiple Sclerosis. Not just RRMS or SPMS but PPMS. Please watch this video and do your own research to make up your mind whether this is the right addition to your treatment programme. It is also advised to seek medical advice. Once all that research and medical advice has been conducted your good to make a decision. The decision our family member with a high EDSS was -‘well if it’ll help, I’ll take anything’. Whilst nuutree would not advocate taking ‘anything’ it has to be said that Biotin is a natural vitamin supplement. As the video footage from MS World shows is recommended by MS Specialists who are prescribing it for their MS patients now. So whilst the powers that be continue their research the team at nuutree decided to take action! We have sourced and launched our own High Does Pure Biotin in the UK. We wanted to ensure that our family member and the UK MS population and other health devotees have access to their chosen treatment and supplement options. We hope to add new wellbeing products including high dose Vitamin D in the near future as well as keep subcribers up to date on industry supplement news and MS treatment breakthroughs. Please spread the word – the colourful wellbeing brand nuutree is in the UK selling high dose Biotin now!