Vitamin D Levels - Mine is a mystery!

Hi Everyone,

I was officaill diagnosed with RRMS in October 2015 but my first relapse was in 2010. I’m not on DMD’s yet as I haven’t had 2 relapses within 2 years!! But in amongst all the research I am doing into this disease I came across something that has really confused me… My Vitamin D level is 113… when I looked on the vitamin D council Website it tells me that levels between 100 and 150 are considered to be high! But it seems MS sufferers usually have low levels of Vitamin D. Can anyone shed any light on this… has anyone else found that they too have higher levels as opposed to low levels of Vitamin D?? I’m so intrigued by this.

Thanks in advance :slight_smile:

This was on the Barts Blog recently and it would appear you fall into the “highly variable” category.

"To remind you it is our policy to advise all our patients to ensure they are vD replete; we aim for a plasma level of 25OH-vD3 of greater than 100 nmol/L and less than 250 nmol/L. We start by recommending 5,000IU/day and testing blood levels about 12 weeks later. If levels are still low and the patient has been adherent then we increase the dose to 10,000 IU/day and if too high we reduce the dose to between 2,000-4,000IU/day. It is clear that plasma levels of vD are highly variable and are affected by dietary and multiple genetic factors.

Hi, The vitamin D Council is based in the USA and they use ng/ml but in the UK the measurement is nmol/L. 113 nmol/L will be the same as 45 ng/ml.

When you get your test results you will see a number in units of ng/ml, for example, 50 ng/ml. These are the units that health professionals in the United States use. Elsewhere in the world, vitamin D blood test results are given in units of nmol/l.

  • To convert a test result measured in ng/ml to one measured in nmol/l, multiply the ng/ml number by 2.5. For example, 20 ng/ml is the same as 50 nmol/l (20 x 2.5).
  • To convert a test result measured in nmol/l to one measured in ng/ml, divide the nmol/l number by 2.5. For example, 50 nmol/l is the same as 20 ng/ml (50÷2.5).

That’s a mighty impressive spot Lenney and I know who to ask about Vitamin D3 in future.

I should of added from the webpage:

My level is between 40-50 ng/ml

According to most standards, including the Vitamin D Council, Endocrine Society and Institute of Medicine, you are getting enough vitamin D!

You are at a good level if your result is 113 nmol/L (45ng/ml). From what I understand from the Vitamin D Council if you are over 250 nmol/L (100ng/ml) that is considered too high.


But the levels where you see deleterious effects are up at 750 nmol/L, or so I’ve been told.

If you are deficient in Vit D can anyone tell me what the symptoms would be? In the past few months to one year, I have experienced more and more muscle aches, bones are painful when laying down, worsening of fatigue, all of which making movement more and more difficult. Bloods showed vit d deficiency, so I’ve been given supplement and told to repeat bloods in three months time. My nurse has told me that she thinks my probs are progression of the ms and that the only thing vits will improve will be fatigue.

Has anyone any experience or thoughts on this please?

Hi Limousin

The following is from the Vitamin D Council web site:

The symptoms of vitamin D deficiency are sometimes vague and can include tiredness and general aches and pains. Some people may not have any symptoms at all.

If you have a severe vitamin D deficiency you may have pain in your bones and weakness, which may mean you have difficulty getting around. You may also have frequent infections. However, not everyone gets these symptoms.

Thank you Lenney. That’s been useful.

I’ve been really puzzled by what’s going on. I don’t think I’ve relapsed and gabapentin has made no difference to pain, it’s not been like usual types of neuropathic pain. For the time being, I guess I’ll just have to wait and see if levels improve with the supplement.

Take care.