D3 levels

I’ve just had a follow up consultation after a recent 2nd MRI scan, which showed liesons on the spine, but all clear in the brain.

My consultant thought this was “a bit unusual” as he would of expected to see some liesons on the brain as well as the spine, because of this he has ordered a lumbar puncture, “to gather more evidence”.

He also told me that my D3 levels are 38 ?

I’ve been taking 5000iu daily of D3 for around 6 months so I’m not sure how this level of 38 compares to other people with MS.

He (the consultant) said it’s not a hugely high figure, but is higher than someone not taking D3, however he would NOT recommend going any higher than 5000iu daily because he cannot say for certain if a higher dosage is safe or would be of more benefit.

He’s NOT saying it’s unsafe to go higher, but in his words, “as your consultant I cannot recommend something that I cannot say is safe or more beneficial”

Could some explain the D3 levels, is 38 an average figure or should it be higher for someone with MS ?

My mobility at the moment is good, I do get the odd weakness, but in general things are good .

I’ve read that a D3 level that is too high can be as bad as one too low ?

Any advice would be greatly appreciated.

Thanks.

Did you have your d3 levels checked before you started on the supplement d3. The level recommended is 150/225 nmols.

Vitamin D3 is fat soluble. The bigger you are the more D you need. When it comes to vitamin d supplements, one size does not fit all. 25ius per lb bodyweight daily is the required dose.

My levels are still low 98 after supplementing for a few years. Summer l take 10,000ius daily - winter l take 20,000 ius. And l get my levels tested every 6 months.

A good guide is the book The Vitamin D Cure by James E Dowd MD - l got mine from amazon.

This week on the news is a case of ‘child abuse’. Where parents have had their child taken into care after the discovery of broken bones. Now the doctors have discovered the family all have a low vitamin d3 count - so the many fractures are from brittle bones caused by the low vit d3. This will open a floodgate of child abuse history - and hopefully help the innocent parents.

Don’t forget Magnesium - which is important to take alongside your vitd3/b12.

l have just started taking a daily supplement from MSSEntials - its a formula especially for us with MS - lt means l only need the one pot - although you do need to take 6 capsule daily. They are from USA - l shall look to see if the same can be found in UK. They contain 35 different vitamin/minerals. l have had SPMS for 31yrs - and do try to do the best l can. So fingers crossed these might make some improvement. l have nothing to lose.

Here is a link to the MS Trust’s good fact sheet: http://www.mstrust.org.uk/information/publications/factsheets/vitamind.jsp

Note that the ‘optimal’ levels referred to are proposals rather than anything formally adopted in this country.

And here is the current NHS guidance for the general population:

http://www.nhs.uk/Conditions/vitamins-minerals/Pages/Vitamin-D.aspx

Note in particular the NHS advice that a person should not take a supplement of more than 25mcg ((1000IU) per day as it, in their words, ‘could be harmful’. Some of us take more (me included) but it would be unwise for a lay-person to recommend to anyone else that he/she should exceed the NHS guidance without consulting his or her doctor first.

Alison

No I didnt have my levels checked proir to starting on D3, but If after taking 5000iu daily for 6 months and my levels are now only 38 then they must of surely been lower prior to taking it ?

Is 38 still too low ?

My consultant said he and many of his collegues would recommend a level of around 50 - 70, but didnt think I should increas my D3 dosage to take my level up. This is what confused me a bit ?

I do take Magnesium alongside the D3, however when I mentioned this to my consultant he sort of frowned, and basically said its not as important as the D3, and in fact commented that I should spend my money on something better.

He did say that “we (MS consultants) think the government advise on levels is too low”.