5 years ago
Vitamin D Reviews Please!!

Hi everyone! I would like to know who is taking vitamin D and what differeces has it made?
I have been taking mine for about 1 month, 2000iu, and I feel good, but I’m thinking of upgrading to 4000iu. I have a friend that is not taking any medicine and is getting really depressed because nothing helps her, now she has a walker 🙁 I really want to help her, and I want her to try vitamin D. Do you think it would help her?

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I’m taking 5000iu and i’m sure it has improved fatigue. Obviously i can’t prove that but a number of studies have implied that it can reduce relapse rates.
I notice you’re taking less than me but i guess living in Portugal you get lots of sun!! I remember i saw the sun once!!!

Also i take LDN and that seems to be doing it’s job. Again no proof really and only anecdotal reports!!!

Hi @inesmartins

I’m taking 5000iu a day of Vit D3, sometimes 10,000iu but that’s when I have forgotten I’ve already had one 😉 I think it’s helped with my fatigue, but it’s impossible to know for sure.

As @stallionicchampionic says, we need to take loads of Vit D as we used to have sunshine in the UK but apparently it’s been cancelled. Something to do with the recession or something…


Nurse took blood this morning to get my vitamin D levels checked. Doctors will have results by Monday afternoon. Here’s hoping that I’m deficient and get vitamin D transfusion 🙂

(apparently Mother Nature wanted the weather to be as British as possible to celebrate the Queen’s Jubilee – mission accomplished I think)

I’ve been taking between 5000-10000iu ov D3 everyday for months and just had my levels checked last week and my vitamin d level was in the 50 range, normal being between 30 and 80. I’m not sure if it improves anything for me but a study is being done in Germany to see if it is effective at reducing or preventing relapses. Like StallionicChampionic I also take LDN which does help.

just got vit d results today – consultant said medical opinion changing constantly about what level is deficient and what the benefits of supplements are but he agreed it can’t hurt so he’s writing to GP to get vit d supplements – my current reading is 45 and he said some drs say the correct level in our blood we should have is 50, others say 100, either way he was happy for me to have supplements – i don’t know at what level i’ll get tho (iu) so will keep an eye on the thread to see what you are all on before i visit the gp

I take 5000IUs a day and to be honest I have not noticed a difference but no harm in taking them….

I just recived a email from a woman that her daughter does treatment with vitamin D3 and she takes 40000iu, and some people that are beeing treated with this doctor take even 60000iu! And she said for me to take more than 15000 if I want to feel good and be relapse free. If you decide to take more than 20000 go and do exams after 3 months to see if the levels are ok. And go dairy free.

See this video and put the subtitles where it says “CC”

Is really interesting!!!


I to take 5000 iu everyday. My levels were very low but now they are a “normal” 103. I will continue to take it, I belive the link between MS and vitamin d is very strong. Although doctor and neuro are very apprehensive.

Best wishes

While vitamin D is relatively safe I would absolutely not recommend to take more than 10000iu without having your blood levels checked before and about every other month. Vitamin D is toxic at too high a level!! Please advise your friend not to take crazy amounts of vitamin D like 20000 IU and 60000 she or he could be asking for serious trouble. There is no evidence yet that vitamin D levels are the cause or because of MS. Vitamin supplementation can be dangerous. Tell them to get lots of sunlight, your body will absorb what it needs through sunlight, but supplementation can cause serious health problems which you definitely do not need on top of MS! Anything above 10000 or 15000 is wreckless.

B12 is more related to energy levels also

Here is something I copied from the website you posted for us to read “Any hormone taken in doses higher than those agreed individually may cause adverse reactions, and vitamin D is no exception. If not managed properly, doses above 10,000 IU (International Units) can cause irreversible damage to kidney function, among other complications.”

There is a really good document published by the UK’s MS Trust about Vitamin D.
I was given a copy when I got my DX, but I’m sure my fellow shifters from around the world have probably missed out on it. My MS Nurses (check me, I have more than one!) were very pro Vitamin D (or D3 to be precise). The document can be downloaded for free here http://mstrust.org.uk/downloads/vitamind.pdf


I’m on two capsules of Fultium-D3 800iu daily. It has made a difference to me and my pain issues. I certainly wouldn’t risk taking such high doses as mentioned in other posts as there’s quite a comprehensive warning contained in my prescription packs.

Sorry! I didnt mean for anyone to take more than the recommended. I just said what the girl told me. My english is very poor…
They take high doses but they are beeing followed by the doctor.
If you want to take vitamina D3 please ask your doctor first, for the right dose for you and blood exams!

Eventually I will move to England in a few months, and I promise that my english will get better. 😀

Hey @inesmartins

Don’t feel the need to apologise for your English, it’s a damn site better than many people who are born here 🙂

At my diagnosis, I mentioned to my neuro that I had read some great reports about d3. She was adamant that I should take no more than the recommended daily dose, as vit d is fat soluble and therefore doesn’t come out of your body as waste. Am a little confused now, not sure what to do. What is the recommended daily dose anyway?

@justdave , aboriginal people in Australia and african tribes man that spend virtually all day in the sun have levels ranging between 125-175. There is recommended daily doses for overall health but people with MS tend to be vitamin D deficient. They’re not sure if that is one of the causes or one of the side effects of MS. Have your levels checked and see where you are. From every thing I have heard and read 10,000iu and under is safe, but I am only going on what I have read and heard. There are conflicting reports on what is the right dosage but I have been supplementing with 7,500 to 10,000iu every day for 3 months now and am barely in the “normal” range. My last level check was about 50.

Hi. I don’t take any VIt D tablets but I do use a ‘LUMIE’ Vitamin D light for approx 10 minutes a day. This definitely helps! The light gives me a more a more positive outlook and makes me more energetic. This is definitely worth a try! Good Luck!

@stephanie , I have never heard of those, I know tanning beds don’t produce a light that produces vitamin d but I have never heard of this “LUMIE” if it is a vitamin D light source that is very cool. Going to check them out online right now.

Those ‘lightboxes’ have been around a long time. They’re primarily used by people with SAD (seasonal affective disorder), sometimes called the winter blues.

@pottypete , yes I was looking online and saw that most people used them for the SAD you described. They range in price from relatively cheap to very expensive. Kind of cool, but I need to do some more research before I commit to buying one.

I’ve been taking supplementation, after a blood test showed I was low. It’s been six weeks now and I have realised that I am no longer having to take painkillers for my bad back. My back has been getting worse for the past two years and I’m wondering if there’s a connection. I know that one of the symptoms of vit D deficiency is aches and pains…. I get another blood test in a fortnight so we’ll see.

I have also heard of a correlation between vitamin D and pain. Some people also take fish oil for joint pain. One of my friends had back surgery a few years back and he swears if he doesn’t take his fish oil the pain starts creeping back with in a week or so.

How interesting. I’ve already decided that even if my vit D levels are normalised I’ll continue with supplementation. Perhaps I should be taking fish oil as well!

Doctor wants me to come in for an appointment after Vitamin D levels were checked last week. Sounds promising in a twisted way! 😉

hi erm my vit d levels were ok when i got tested but how do you get those supplements you all seem to know about? ive tried sun beds (but that’s more cause im a fake tan freak than for the MS, i just use the MS as an excuse haha)
ta, han xxxx

Hi @hannah I got mine from the States, from http://www.vitamind3world.com/ mine are the ones at the bottom left on the homepage.

@aardvark thank you i’ll look into it 🙂 xx

I now take the same ones as aarvark. I’m not good with remembering taking them thoug ;> Still when i had my vit d levels checked before i started takin high dose 5000 iu and I was not deficient. One of my neurologist swears by it! He gives it to his children too. And i give it to my daughter too. 2000iu. All babies from birth and young children in The Netherlands are given vit d droplets. Thats standard! I now live in London but weather wise it is just as grim 🙂

I once asked on here if it is a must to be deficient when you have MS they seemed very surprised to learn i was’nt. I still don’t know the answer. Anybody? 🙂

@lottie that is a puzzle, I have never heard of anyone with MS that wasn’t deficient, as a matter of fact they say here in the US that about 80% of people are deficient.


My Vitamin D levels were super low when they were first checked even though I was taking supplements. I increased the dosage and have felt a difference. I now have the energy to get through my zumba workouts again. Who knew?

@chueykooh I agree! to be truethfull….since the results of my bloodwork came back I have been having doubs about my ms diagnoses…Especially since they want me too go on this trial for new drugs. The dmt clinic neuro wrote a letter that I did not recognise myself in. Including some results of the physical exams he did (he diagnoses upgoing plantar response) I had this double checked by my GP and she said there is no upgoing plantar response. She said all is normal. I also spoke to my MS nurse about it but she felt uncomfortable I think. And I did not have the guts to tell her what i really thought. MY symptoms are mild. I had a few “relapses?” but there is always this could of also been because of…Physically i’m very good the only symptom I’m hunted by everyday is fatigued. Sometimes I think that after 4 yrs I’m still in hardcore denial. Yesterday I started reading and researching other deseases that mimick MS. I don’t want to highjack this this topic so I’m sorry i’m ranting on. Sometimes I wish I could just go for a second opinion.

Lottie: YOU CAN GET A SECOND OPINION. You only have to ask. You are within your rights to change neuro teams. I see you’re living in London, which has the the best hospitals in the country for their MS care. If I hadn’t moved teams, I think I’d have gone mental. I’m repeating what I’ve said in other posts: there are some bad doctors out there. You just need to decide which neuro team you want (lots of shift.ms people here will give you recommendations), tell your GP you are dissatisfied with your current treatment) and say you want to change. Under the NHS rules, it’s allowed.

Multiple Sclerosis is the label for a condition that includes the results of lesions on the brain found by an MRI scan and a lunbar puncture looking at your spine – consultants aren’t idiots (for the most part!) and look at all the evidence they have about you.

I think the system’s flawed because Vitamin D levels aren’t checked when you’re initially diagnosed and if you were I think it would stop a whole lot of anguish and make life easier. (but it’s too expensive to trial this theory so pharmaceutical companies who can afford to research their products can sell expensive drugs –end of rant)

It’s almost surprising that two relatively cheap options, Vitamin D supplementation and LDN, are not being progressed seriously.
Wouldn’t want the big pharmaceuticals to suffer would we? Let us suffer on their behalf!

Think a new topic is needed to not veer away from the original subject 😀

@DJDsouza did you have you results? How are your vitamin levels?

I agree @stumbler , possibly two cheap options for MS that actually work with no side effects.

@inesmartins Was told to make an appointment with GP to discuss Vitamin D results, so sounds promising. Guess I’ll find out next Friday what he plans for me – am hoping a monthly holiday in the Algarve for a few days, but will probably just be a booster injection 😉

I take a multi vitamin and cod liver oil to get my daily Vitamin D. Not sure it actually does anything to be honest, but at least I feel as though I’m trying to do something helpful.

I can’t say that I’ve ever had the opportunity to have my Vitamin D levels checked. Is this something a nurse/doctor can do on request?

@sazjh I went to GP and asked to have my levels checked. A nurse then had to take my blood to send off to get it checked. The GP then wrote to me to say I should come in for an appointment…. It’s a long process, but should mean I get my vitamin D levels raised on the NHS as the supplements I take are nowhere near the levels I need

That’s good to know. Thanks for that 🙂

I Don’t wanna get a second oppinion cause they are bad. My orriginal neuro/ team is not bad at all. They have been on the ball. I have got a moderate lesion load a g enhancing lesion at the mo and unmatched bands ( I did all the LP and in the mean time about 10 mri’s and all still not sure about my dmt clinic neuro. Don’t know if he’s bending results (apart from vit D) to get in this trial. I looked in to other possibilities the last days but non of it fits. So i’m guessing i’m in denial 🙂 so i’ll start being bit better with my intake of my vits 😉

There is a difference between vitamin D2 and D3.


The one that its suppose to be good for MS is D3.

@chueykooh – yet another “everyone with MS is deficient in vitamin d” I’M not!! LOL.

So now you’ve heard of someone. 😉

@inesmartins i have a rating of 37, and was prescribed Vit D supplements. A friend hats a rating of 17. My GP said a healthy level is at least 75!

@hairstylst73 what was your rating for vit D levels in your blood?

I got the book vitamin D revolution a couple years ago. It says it should at least be 50. Mine was 75. They say the highest should be 80? You can get vitamin D toxicity even though it’s rare. its a really good book. 🙂 but like most things you have to take suggestions with a grain of salt. I also read a book called “the gold coast cure” about MS that is about diet, supplements, and exercise. Never really followed that one though because with 4 kids it was too hard to make different meals every day. And I have always had a hard time swallowing pills and this was a BIG list of vitamins.. Which most vitamins are HUGE! LOL. So if that helps

Wow…..75 is the level for those who aren’t deficient. I think there’s definitely a link, but as always the exception disproves the rule 😉

@DJDsouza 37 is really low… Tell me what dose (iu) of vitamin D they prescribed you.

@hairstylist73 hi. Why do you have so good levels? Do you take sun everyday? where do you live? That is really interesting, because even people without MS, many of them are deficient in vitamin D.

well the vit D saga continues – my level is 42 so consultant was writing to GP to write a prescription – consultant said opinion changes from week to week as to what the ‘normal’ level is – historically 50 but more recently they say it should be 100 – and how useful vit d supplements actually are….this was 3 weeks ago (after having 2nd test as the results from the 1st test the month before were lost)….had modafanil check up with GP who said my vit d levels weren’t deficient so wouldn’t give a prescription without hospital’s letter – argued i was deficient and was happy to wait for that letter as it will explain what level supplement i need etc etc but to date the surgery keep saying they never received the hospital’s letter (it was faxed AGAIN on weds but allegedly still not arrived!) AAAARGGGHHH! so i may EVENTUALLY get the damn prescription soon – latest tactic – hospital to scan and email the letter, i print it off and hand deliver it……watch this space……..

@inesmartins Vitamin d levels are measured two different ways. Nanograms per milliliter or nmoles per liter. They are two very different results as far as the numbers. Deficient: Less than or equal to 10 ng/ml (25 nmol/L), Insufficient: Between 10 ng/ml and 20 ng/ml (25 to 50 nmol/L), Sufficient: More than 20 ng/ml (50 nmol/L), these are just guidelines, no one knows for sure what the maximum vitamin D levels you should have. As I posted earlier, some people that live in the sun all day such as in parts of Africa, Australia, and other parts of the world, their vitamin D levels can be as high as 150 nmol/L or more. You talked about vitamin D2 and D3 in one of your earlier posts. Vitamin D2 in derived from plants and fungus. This will be converted into D3 in the body but you loose a lot of the vitamin in the conversion. Vitamin D3 you get from sunlight and animal products, vitamin D3 is actually made from sheeps wool. Vitamin D2 is what they give you in prescription form. So if a doctor gives you a prescription for say 50,000iu of vitamin D, it is actually vitamin D2 not D3. Your body will convert D2 into D3, but instead of getting 50,000iu you will only be getting about 12,000iu of D3 because a lot is lost in the conversion. Vitamin D3 is only available over the counter, not as a prescription. I hope this helps to explain the differences in the levels and also the difference in taking vitamin D2 and D3. 🙂

Important to note there is only one licensed POM (prescription only medicine) available for doctors to use in the United Kingdom which is halal certified.

Potty Pete mentioned it Fultium-D3. The higher doses are not proven and food supplements are just that expensive and unreliable in content of active ingredient note page 20 of the UKPAR from the regulator.

Be safe and get your doctor to prescribe it for you. Better to be using a licensed safe monitored medicine than a food supplement.



Just so @hairstylst73 doesn’t feel all alone in this… my Vit D3 levels tested normal as well. I am a vegetarian and I definitely do not spend time in the sun as any amount of heat exacerbates my symptoms, but as @chueykooh noted, Vit D2 is found in plant matter and is converted to Vit D3 which obviously my body seems to be doing from all the veggies I eat. Interestingly, fatigue is one of my most debilitating systems nonetheless.

Yeaha I thought it was not possible now i see two msers who are not lacking vit D either!!


By chance I had a blood test done and discovered that my vitamin D levels were critically low at 8.3 nmol/L. After taking suplplemets of 10000iu over day my levels are up to 188! My symptoms are pretty good at the moment. I was quite upset with my neuro and ms nurse for not telling me about the vitamin D research! It should be one of the first things they tell new patients. Get your vitamin D levels tested!

I rang up the MS nurse this morning to ask for advice, as my level was 37 and has risen to 58 after two months’ supplementation (prescribed by GP). I am gong to see the GP tomorrow and wanted to know from the MS nurse what level I should be aiming for – so I could encourage the GP to keep me on prescribed vit D. The MS nurse has told me that the test results are pretty meaningless unless I can tell her WHICH blood test it was. Apparently, there are various types and each has a ‘normal’ range, so just saying I have a level of 58 is no indicator of how near the norm I really am. But she reckons that when I do reach normal, whatever the figure is, I should be on permanent supplementation (self-funded) of 5000. That is the unofficial ‘best advice’ from the National Hospital MS team. Unfortunately, too, until research gives more definite clues, there is no guidance for GPs on the optimum level for MS patients. She also said that understanding GPs do keep MS patients on permanent supplementation – it’s just that they have no requirement to.

i think VD makes a difference but i only started taking 2 1000 a day don’t know where to get the higher doses. B12 helps me with the cramps.

Hi @lorag see my comment up at https://shift.ms/p/topic/vitamin-d-reviews-please/#post-17221 for my tip on where to get your Ds

thanks aardvark


“The Institute of Medicine recommends 600 international units (IUs) of vitamin D a day for adults ages 19 to 70. The recommendation increases to 800 IUs a day for adults age 71 and older.

Some doctors question whether these levels are adequate and think that getting more vitamin D would benefit many people. However, the Institute of Medicine recommends that adults avoid taking more than 4,000 IUs a day.

Very large doses of vitamin D over an extended period can result in toxicity. Signs and symptoms include nausea, vomiting, constipation, poor appetite, weakness and weight loss. In addition, vitamin D toxicity can lead to elevated levels of calcium in your blood, which can result in kidney stones”

just been googling this

four choices to get enough Vitamin D

From sunlight – Many medical experts now say daily, short sun exposure on bare skin can help most people prevent Vitamin deficiency. Caucasian skin naturally produces 10,000 IU in about 20-30 minutes summer sun exposure – without sunblock.
From a tanning bed – To give you a tan, tanning beds emit high amounts of UV radiation. Be careful – people who use tanning beds are 1.5 to 2.5 times more likely to develop skin cancer.
From food – Some foods, like milk, cereal and orange juice, are fortified with Vitamin D.
From supplements – Vitamin D3 cholecalciferol is the form produced by our body with sun exposure. The debate about how much Vitamin D is enough continues.

Does anyone here use a sunbed for vitamin D? I used to use one twice a week eeeek !!! that was 20 years ago though, but now am thinking whether it would be beneficial for the vit D we are supposed to need
does anyone feel any benefits?

Certain amount of irony that I was in Phoenix, AZ last summer and spent massive amount of time outdoors, even through winter I was between Colorado Springs and Phoenix I was outdoors daily fairly regularly…and I got my first major relapse and my DX…in May..in Phoenix

(for those in the UK, Phoenix is in a place called “The Valley Of The Sun”…named for a reason)

Here is an interesting link to add to the discussions:


There have been some new studies published recently.

Also I was in Scotland recently and read in the newspaper that they have found some evidence in their studies of a link, Scotland having the highest frequency of MSers:


So I am all for 15-20 minutes sunbathing without sun cream and the Vit D supplements, it is very helpful to realise that there are different Vit D’s. I must check what one I am taking thanks @chueykoo for that snippet.

Seems like vitamin D can be a miracle worker for people with MS. I take 5000iu a day and 10 000 on a rainy/cloudy/wintery day. I’m happy with the amount of time I have been symptom free since I started taking it 6 months ago. I do wish neurologists would prescribe it more to their new MS patients. Seems like we just have to find out by chance. Definitely start taking it, you have nothing to lose. It’s also very reasonably priced. I get mine from amazon, Life Extension.

After an 8 week battle i finally have my Vit D tablets from Dr – I’ve been given 500iu only and after reading posts wonder whether this dose will do anything for me as many seem to be on around 5000iu??????!!!!!!! seeing as its been such a battle to get this far do i say anything???? how often should you get your levels checked? i am on TY so have a blood test every month and the nurse is very good that i can ask for an extra test when necessary to be taken at the same time but don’t want to be a nuisance causing a fuss at drs if i am on the right level – v v confused 🙁

@Becks: There’s a lot I can’t get my head round with this (read my post about blood tests) including the dosage information, which seems to vary with the packaging. Could it be that 500iu is the same as 5000iu? I’m pretty sure that an MS nurse would clarify what you’ve been given – it’s just that as you say, it seems ridiculous that a doctor would prescribe only 10% of what you need. Just a thought.

The first article on this website may be starting to address our dosage concerns :- http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2479

I don’t think it has anything to do with where you live. I live in Australia where there is heaps of sunlight!!! But somehow, i too am extremely low in Vit D. And many people are in Australia.

Through Australian blood testing; 80 is on the low side of the spectrum here and anything below or on this result causes the need for medication.
Most people with MS here are advised to take 5000 regardless of there results anyway.

Australian people are always reminded to slip, slop, slap with suncream and protective clothing resulting in some people not being able to absorb the sun’s rays. But some people fail to be ‘sun smart’ and risk the chances of developing skin cancer by sun baking on the beach for long periods of time to develop a ‘tan’. It would be interesting to follow these people and see whether they do develop MS (providing they do up keep sun exposure without protective measures). This could provide some answers… although i would not want anyone developing skin cancer or MS for a ‘study’.

I had my vit B12 checked and that too was extremely low. I have also heard a link between Vit B12, Vit D and MS being useful in managing symptoms and the possibility of delaying further attacks.

It is all very interesting…

i agree with u jade, i’m from australia and growing up i was a beach bum or at the pools, so i had plenty of sun exposure, so the studies saying not much sun exposure growing up could be a cause of MS i feel is not true. i think our body is unable to absorb vit D, like many other things our body is unable to do anymore. that is what i believe.

Hi Lorag

I know, it is pretty weird! I grew up in South Africa and was in the sun a lot. But then I moved to the UK and I think that’s when things went downhill. The promising thing is that my levels are up to 188nmol/L and a few months ago they were at 8.3nmol/L. Maybe we just need to be really consistent with the supplements as our bodies can’t store it for very long.

Have you been taking supplements for a while and not seen an improvement in your levels?

Not to answer a large amount of questions but in the book “Vitamin D Revolution” he explains which vitamin D you need. It tells you that depending on where you live you can only get it from the sun at certain times of the year and only during certain times. Also you can NOT get the vitamin D you need from a tanning bed. It’s an interesting straightforward read. But seeing as my levels were good it didn’t make much sense to me. Just another part Of the MS puzzle I don’t fit in to

Just been to Dr’s for blood test results, as guess what, despite eating lots of Vit D rich foods and sitting out in the sun as much as I can,my levels are half what they should be!

Dr did offer to give me a prescription but already got some supplements in. Will re test in a few months, also giving them to my kids to protect them.

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