Could it be that your levels have since dropped since it's winter now? When did you have the first level taken?
This prominent MS neuro recommends:
"If you live in the UK (a country with poor quality sunlight) to get your levels above 100 nmol/L you need to take at 5000IU of vitamin D3 per day."
"On a personal note when my family an I started taking vitamin D supplements about 4 years ago we started on 2000IU per day. Despite this I was still deficient at the end of last winter. This is why I have now increased our level of supplementation to 5000U per day, which is in line with the Vitamin D Council's recommendations."
Despite taking 5000-6000 IU/day, my vitamin D level was recently (late August) at 30.3 so I am trying to take two 5000 IU pills (once in the morning and once in the evening) to see if it has any effect.
Thanks for such a prompt helpful reply. Should I taper this level up as I have only been taking 1000 and do you know if you can get it on prescription in UK?
Wow your Vitamin D levels are very low. I am sure it is also linked to Uk miserable weather and low amounts of sunshine. I shall try and get out as soon as those yellow rays appear.. Or perhaps I shd persuade hubbie it is time for a winter holiday to soak up some sun (in a not too hot climate as I can't take the heat) Can't win..I hate the cold and my body does not like extreme heat!!
Nice to hear from you xxxx
I live in California. My levels when first tested where in the 20's. I had to take I think 15,000 IU for a month or two. My levels went up to the 70's. I've been taking 5000IU a day for almost a year now. I recently retested and my levels are back into the 50's. I am now taking 7,000 iu daily now. My nutritionist said that would be wise since we are nearing winter.
Remember, it is VERY important to take Vit D with a snack or meal containing fat. Otherwise, your body will not absorb it.
This is a very confusing topic, to say the least. Different labs use different techniques, and/or measurements, and/or chEmical components.
I for one know next to nothing about such things, so am relying on memory of what my MS NP told me. Last go-round I was told that they wanted their MS patients to have a D level 'in the 50s.' Mine was 49 at the time. Apparently this refers to nanograms per milliliter. In the UK they HAVE to be using a different measurement. In the US, normal is considered to be 30 to 74, although there has been a bit of a controversy as to how much D is really needed. They've actually scaled that back, though clearly not for MSers. I don't understand that either, because low D is theorized to be one of the causes of MS, but once we have it it's too late, I would think.
If anyone can clarify all this, please do.
I am not yet diagnosed with anything, but my vitamin d levels were tested in the summer and were 23. They told me to take 400 of D3. I went back for a retest and they were at 22. So now I take 1000 IUi of D3 once a day. I will be interested to see if my levels go back up or not. It seems 1000 is not a very high dose for someone who is deficient, but what do I know!
Only 400 iu a day....I'm not a doctor but I know that is not nearly enough with those low levels!!! I'll bet that a doctor would recommend at least 15,000 iu daily for at least a month and then maintenance with a much higher does than that...
I meant a much higher does than 400 iu...(not 15,000). Anyway, I would look into that because low Vit D levels could be causing issues and you might feel better with higher levels.
Vitamin D uses up magnesium for conversion to its active form in the blood.
Problems with taking high vitamin D without enough magnesium:
Vitamin D levels not rising or rising very slowly
Creating or worsening an existing magnesium deficiency
They talked a lot about Vit D on the NMSS teleconference earlier this week. There was a summit of world experts (*held in Wisconsin) about the role of VIT D and MS.
You might be able to google that for more informaiton.
They did say in the teleconference there is a definite correlation between D and relapses.
Higher D = fewer relapses
Lower D = More relapses.
Off to dinner with friends of I would search for you, Sarah.
Sarah: I didn't taper up and have never heard of needing to taper, but don't know for sure.I also don't know about prescriptions in the UK.
I buy 5000 IU capsules from a website called iherb (maybe they have something similar in the UK) so that minimizes the fillers.There aren't very many vegetarian sources of D3, but I take one made from wax found in sheep's wool (lanolin)
Some people take really a lot (50,000 IU), but I think you have to work with a doctor to get that much, at least in any practical way.
Ess: There has definitely been controversy about vitamin D levels. From http://www.ncbi.nlm.nih.gov/pubmed/21934610
The recent contrasts between the Institute of Medicine (IOM) report and the Endocrine Societies report have caused great confusion with respect to the dietary requirement for vitamin D as well as the amount of circulating 25-hydroxyvitamin D that is desirable. Much recent data contradict the suggestions of the IOM report [the IOM's recommendations were much lower] with respect to vitamin D's role in chronic disease such as cancer, cardiovascular function, immune function and autoimmune ailments such as multiple sclerosis.
Controversy regarding supplementation with vitamin D is fueled by the different purposes of the IOM (guidance for food fortification and not to individualized patient care) and the Endocrine Societies (patient care) reports. Healthcare providers should formulate their own opinions with respect to vitamin D as it pertains to the care of their patient.
They don't actually know whether increasing vitamin D levels helps once you have MS. There are a number of trials trying to find out:
and a couple done. http://www.ncbi.nlm.nih.gov/pubmed/22025459 used D2 and found that a high dose didn't seem to help. A critique at http://multiple-sclerosis-research.blogspot.com/2011/10/results-from-first-trial-of-vitamin-d.html
The research I have shows people with MS need 60ng/mL (USA) or 150 nmol/L (Aust).
Just thought I'd share this with you - my neuro said that my Vit D levels were 'super-super-dooper low.' Not sure how scientific that is!
Hi, my MS specialist told me to take 5000 IU, so thats what I do. I don't think you can take too much vit D3....I get them in 5000 IU capsules online.
My vitamin d was low also. My neuro put me on 50,000 for a month but, he never rechecked them
Merry Christmas to all.
My levels were 24 and was rx'd 50,000/week. I was not rechecked either but it seemed to help. What Red said about magnesium, above, is very important. Look up what mag def can do to a body. Be sure to check what types of mg to use if you supplement and be sure to check with your doc first. (Research testing for mg if doc says to test first and ask lots of ?'s)
The vit D you take is like everything else... what form is it in. Is it reliable? I pay for rx so it is regulated. There is talk about synthetic D. Couldn't tell you anything about this either but it sounded like checking out.
Most vits and minerals are available in powder or liquid form. These are most useable by the body and don't end up down the drain, if you know what I mean.
Thanks for all your very interesting helpful comments, especially about taking it with a snack with fat..so and presumably a yoghurt would be ok? Also about magnesium..so looks like I need to take that also..although what strength???
Our measures are different in uk and my consultant said he would like to see me up to 125-150 nmol/L so looks like our measures correlate with Australia.
Pleny of food for thought here so I appreciate all your answers and will let you know how I get on in due course in three months time when I am rechecked for drug trial.