Has Anyone Used High Dose Vitamin D3 ? - Fibromyalgia Acti...

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Has Anyone Used High Dose Vitamin D3 ?

Angel_153 profile image
28 Replies

Hello everyone,

I have just read a really interesting Kindle E-book (a free one!) written by someone (I think) called M. Azziz. He provides some hugely intriguing data and facts, complete with proper medical references, plus his own observations and experiences of the massive benefits of taking sufficient D3 - in most cases, that equates to about 10,000 iu's a day, using blood tests as required to check that you aren't taking it too far.

It's called "Why Vitamin D Should Be Flying Off The Shelves", and I urge all of you to read it.

I have to say that I was keen to try it - I've been struggling very badly for months and months (I mean more than usual) - so I took 5,000 iu's for two days and have now upped it to 10,000 iu's. I've looked at my usual supplement supplier's site, and read the reviews on one 10,000 iu product, and have ordered it. I have had 2 patches of a few hours each, when I have felt like my brain is working, and that I might even be able to get up and actually DO something. I am trying to be patient, and haven't leapt out of bed and done anything. I am trying to do the pacing thing.

I wondered if anyone here has tried this high dosing with D3.

I would respectfully ask that if you only have something negative to say about the alleged toxicity of more than 400 iu's, with stories of kidney stones, osteomalacia, etc etc (all from studies done with either D2, or with inadequate D3, or with D3 but no Vitamin K to drive calcium to the bones), then please please don't waste time trying to tell me of the "dangers" of using 10k iu's :-) I'm aware of all those things. It's obviously important to understand how things work, what their mechanism of action is, along with any possible downsides, and it's clear that if you supplement with a) only calcium, b) calcium and D but no Vitamin K, c) Vitamin D with no K or calcium, or d) Vitamin D2 instead of D3, then you'd quickly be in trouble. I am aware of all that.

What I'm interested in is hearing if anyone has experienced any benefit, any remission of pain, increase of energy, increased cognitive function, increased mobility, etc. There are a lot of studies out there that show it to be highly beneficial, and very high doses are used in treating MS, too. The author of this e-book, and his autistic brother who developed osteomalacia,, have been taking between 5,000 and 12,500 iu's for more than 6 years with nothing but beneficial effects. No kidney stones, osteomalacia reversed.

Anyone ?

:-)

xXx

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ladymoth profile image
ladymoth

High doses of Vit D have been demonstrated to have a good effect, but nonetheless there is a danger of toxicity if these doses are not taken with correct supplementation and medical supervision.

As with all groundbreaking treatments, caution is the watchword, but so long as you have checked it all out and have your doc's approval, then good luck and best wishes for a rapid improvement.

Moffy x

Angel_153 profile image
Angel_153 in reply toladymoth

:-) Thanks Moffy :-)

Yep, fully aware of all the implications, the parathyroid involvement, the claimed potential for kidney stones, etc, and have checked all out, of course. Have been studying orthomolecular medicine /nutritional medicine /natural medicine for over 15 years now, partly out of the desperation we all feel before (and after!) diagnosis. Used to work as a consultant nutritionist for a private doc, too.

I am certain that as long as sufficient calcium, along with sufficient Vit K (to direct the calcium into the bones instead of it being dumped elsewhere in soft tissue, like kidneys) is taken, the effects are all good.

Read the book ! It's an impressive work, with around 50% of it being detailed references of the medical papers he's used to reach his conclusions.

Thanks again,

xXx

I,m just going to say respectfully I don't think you will find many people who have tried taking this much..... Of course if I am wrong I will be reading the answers you get with interest

Ps the first paragraph says you should get blood tests as required to check you aren't taking it too far so I am assuming you have seen your gp about this and have your blood tests your blood tests booked.

VG x

Angel_153 profile image
Angel_153 in reply to

Hiya Grumps, :-)

I feel like I almost know you, now!

If you go to iherb.com's site, put in Healthy Origins Vitamin D, and look for the 10K iu one, there's a list of reviews for the product - quite a lot of them, and some of them even give details about the blood tests they've had that confirm they needed to take that much, and the blood tests following supplementation which show how their levels have risen - still within safe parameters.

I'm particularly interested in the potential benefits of D3 because there are numerous studies saying that all breast cancer patients have low Vitamin D - I had that in 2007, and it isn't something that can ever be said to have gone. Breast cancer is one of those that is likely to come back unexpectedly (everyone I know that has died from breast cancer secondaries has fallen ill within months if not weeks of being given the 5 year all clear :-( ) so I'm keen to give Vit D3 a go. Actually, there are a lot of studies that show a lot of different cancers are destroyed or prevented by optimal Vit D3 levels.

And of course I'm involving my GP in this. I just need to be able to a) get a bloomin' appointment with him (he's stupidly popular, for good reason), and b) get over the miserable bug I've had so I can get down to the surgery.

Given that I've been house if not bed-bound for the past 5 years plus, and the organic very healthy diet I used to be on has changed dramatically as I haven't been able to cook or anything for the same length of time (my lovely BF does all the food shopping, and the cooking, and he's self employed and trying desperately to pay for everything because I can't work, so he literally doesn't have the time to prep everything from scratch like I used to, bless him, he does his best but I never used to eat anything at all that came out of a packet /box) I know it's highly likely that I'm very deficient at the mo. I'm rarely outdoors in natural light (not that I'm often outdoors in the dark! LoL) I used to train "difficult" horses before all this, so was outside a lot. I also used to eat salmon 2 or 3 times a week, and ate a lot of fresh green leafy stuff, which is full of Vit K.

My cancer was oestrogen based, so they took all my oestrogen away and am now osteoporotic. I am keen to put this right, too.

My teeth were damaged badly by chemo, and I had to use a high fluoride toothpaste to damp down some of the sensitivity I had as a result. Eating was very painful for a long time. Because of the high fluoride, I now have stripey discoloured teeth (fluorosis). There are papers cited by Dr Sarah Brewer in her Essential Guide to Vitamins, Minerals and \Herbal Supplements that claim fluorosis has been reversed by optimal D levels being achieved.

I'm also interested in it because deficiency shows as, amongst other things, muscle pain and sleep disturbances - sound familiar?

But read the book for yourself, Grumpy, it's a real eye opener.

Thanks for your advice, and I will keep you informed :-)

xXx

PS Also according to Dr Brewer - "The upper safe level for long-term supplements is suggested as 25mcg per day (1,000 iu's). This generally considered too low, however. An upper safe level of 50mcg (2,000 iu's) has been suggested by the European Food Safety Authority and in the US, while an upper safe level of 80mcg per day (3,200 iu's) has been set in Australia and New Zealand" - it doesn't make much sense to have a higher limit in far sunnier countries where D3 synthesised via sun-skin exposure is certain to be higher than in a north European country like ours.

It's also worth noting, when looking at RDI's, that not only do different governments have different opinions, and different countries have different levels of minerals (the UK stopped using selenium-enriched flour from the US for all our bread - thanks to the EU - some years ago, since when selenium deficiency causing hypothyroidism has become a real problem in the UK because our soil selenium levels are known to be low, especially up north, from memory) but also that these RDI's are only sufficient to prevent full-blown deficiency states (like rickets or scurvy), and further, they work on the principle that everyone is fully healthy, with no health challenges or digestion impairments, is active, and eats food grown or raised on properly nutrient rich soil.

Brewer goes on to say that toxicity can occur at intakes exceeding 500mcg a day, which is 20,000 iu's, so twice the protocol that I'm proposing to follow.

Angel_153 profile image
Angel_153 in reply to

PPS and yes of course I'll be getting my levels checked :-) I isn't dim ! :-P LoL

Azziz gives details of optimal levels in the book - do I take it that you have had a look at it ? I will be aiming for these levels. He points out that different hospitals have different opinions as to what the optimal level is, even in the same country. It's all a bit random, really.

On an utterly cynical note - can you think how much money the pharmas make out of all the Vit D deficiency-related illnesses each year? Pharma and govts go hand in hand, and pharma is a multi billion pound industry that the govt makes a lot of money out of. Do you seriously think they are jointly going to tell us what the REAL answers are to health problems, or do you think there's a possibility that they will perpetuate poor health to keep sales of drugs going ? They can't, as I'm sure you know, make any money unless they can invent a substance and patent it. It's the patent that makes the money. When they find something natural that works, they can't patent it because they aren't allowed to patent any naturally occurring substance. So they make a "Nature Identical" substance, which is NEVER identical, similar possibly, identical, no. That's why drugs have side effects that the natural substances they're based on don't have, like Gabapentin and Pregabalin both being based on the neurotransmitter Gamma Amino Butyric Acid, GABA, which you can buy as a supplement, and is very useful for a lot of people in helping them relax and sleep better) (dammit, I really must find a way of making my sentences shorter and more concise!)

You'd be surprised to know how many "studies" are done each year, damning natural medicine, of course, that are funded by pharmaceutical companies, giving skewed data and basically false results. It isn't in their interests to endorse anything natural, however beneficial it is for out health and well-being. Don't get me wrong, drugs have a place, and I would be in a far worse state without several of mine, steroids and anti migraine, anti emetics, and analgesics included. I'm not against drugs, per se. Not at all. My life would be unbearable without the things I've mentioned. BUT I AM very against misinformation, particularly when it results in unnecessary illness, pain, suffering and all the rest of the crap we have to put up with.

There's another book, Big Pharma, by Ben Goldstein (I think). My BF gave it to me for Christmas. Very informed on this topic. Some jaw-dropping examples of deliberately skewed data from the pharmaceuticals. Truly.

xXx

jillylin profile image
jillylin

Hi,

I was given high doses of vitamin D3 but it did nothing to help me though I know some people have had positive results. And like VG says, ask your GP and have the required blood tests as too much can have a detrimental effect.

Hugs

Jillyxx

Angel_153 profile image
Angel_153 in reply tojillylin

Thanks Gilly :-)

If you don't mind me asking, how much were you on and how long for?

It may not have had the desired effect if it wasn't enough, or if you didn't have sufficient calcium, or if it was D2 not D3 (3 is from animal sources and is called cholecalciferol, 2 is from plant sources and is ergocalciferol), and also if you weren't taking enough Vitamin K - Vit K is what sends the calcium to the bones, and without enough of it, the calcium ends up being dumped in soft tissue instead, with no improvement to bone density as a result.

xXx

jillylin profile image
jillylin in reply toAngel_153

Hi,

I was Ad-CalD3 twice daily for 3 months .

Hugs

Angel_153 profile image
Angel_153 in reply tojillylin

Hi again, yes that's what I'm on at the mo too.

But with no Vit K to direct the calcium to your bones, it is unlikely to have had any beneficial effect. Also, I've done a bit more research and it turns out that the much maligned Vitamin A also needs to be present in amounts larger than recommended by the European guidelines in order for D to work properly. Even the Merck medical handbook, which is a doctor's guide to illness and treatments, recommends much much higher doses of A for all sorts of things - including the prevention of birth defects, which is what the big warnings about Vit A are often about. So another gross inconsistency of info to the consumer - it all helps maintain the profit to the drug companies.........

So unless your diet consists entirely of liver and lettuce (rich sources of A and K respectively), Ad Cal D3 won't have much effect. Plus. as far as I can determine from the data, the tiny amount of D3 in Ad Cal really isn't sufficient to replete D levels.

Hope this helps,

xXX

Maladjusted profile image
Maladjusted

I am currently taking it under medical supervision. I am taking Dekristol 40000u for 10 days followed by 20000u once a week for a further 8 weeks. No results as yet but was given it last year and found it helped the pain. Levels have plummeted again, so this is my second course

Angel_153 profile image
Angel_153 in reply toMaladjusted

:-) That's encouraging to hear ! - I don't mean encouraging to hear you're in pain again, but that your pain levels improved when you were on a v high dose short term.

What form of D is Dekristol ?

20,000 iu's a week works out at about 2,857 iu's a day, which sounds (I suppose) a reasonable amount to have as maintenance following 40,000 iu's a day for 10 days (because the body stores Vitamin D to use as when needed when there isn't so much sun around), but how do they leave you after that 8 weeks? Do they suggest you take any supplemental D at all after that, or do they wait to see your levels drop again, and for you to be in more pain again, before they'll give you another course? Is it the 25(OH)D test that you have through your GP, or the hydroxy one ?

Very interesting - thanks for your reply :-)

How much were your pain levels improved?

xXx

Maladjusted profile image
Maladjusted in reply toAngel_153

Dekristol isn't licensed in UK, and has to be imported from Germany, so not all UK doctors are au fait with it.

From what I can see on the patient leaflet (I have been given two, a large one in German, and a smaller one in English) the active ingredient is colecalciferol. I asked the doc and he said it is a form of pure vitamin D in a peanut carrier oil.

After I finish the course, I am to make an appointment for a blood test to check the vitamin D levels, and once results are back return to doctor to discuss the results and see what happens next.

I think last year I should have then been kept on a maintenance dose, but the doctor who prescribed it at that time left the group practice without arranging a blood test or even advising what I should do next. Because my pain levels have been particularly bad I requested the Vit D test, so am starting over again.

Last time I took this my pain levels were greatly improved, and I noticed results within a week of starting the course. Still some pain but more bearable, and I could get around for the most part without my stick.

I have been given Lyrica, don't like the side effects, especially the weight gain, and it isn't doing a lot for the pain either, so am hoping to be able to reduce the dosage if not give it up entirely if the Dekristol has the same results as before.

I am not sure what the test is that I had done - but it was done by the phlebotomist at my surgery.

Hope this info helps in some way

Em xx

Angel_153 profile image
Angel_153 in reply toMaladjusted

Hi Em,

Thanks for that :-)

Cholecalciferol is D3, from animal sources. That's the best to take. D2, which is far less biologically active, is unfortunately what most UK docs prescribe.

Do you know what the dose is?

Really brilliant that you've got a doc here who will use this therapy, and obviously it works for you, like I think it would probably work for the majority of people, especially if Vit K and Vit A are included in the proper ratios to the levels of calcium and D. Nothing works in isolation in the human body, and unless it's for a specific problem, you shouldn't use a single nutrient to try and resolve health problems in a general way because including one nutrient without backing it up with a multivitamin and mineral supplement, or one amino acid without a broad-spectrum amino blend, or a single B vitamin without a general B complex, will only cause the body to read a gross imbalance in all these things (and their resultant body chemicals, hormones etc) and will cause more problems that it fixes.

Thanks for letting me know,

xXX

Maladjusted profile image
Maladjusted in reply toAngel_153

I don't know what the recommended dose of this is, or the maintenance dose, but my doc has prescribed 40000u per day for 10 days, followed by 20000u once a week for a further 8 weeks. Then to have a blood test and return to him for a review.

Been taking it a week now, and no results as yet, though believe my Vit D levels were much lower this time. Hardly surprising with the weather we have been having, sunshine has been in too short supply. I wonder just how many people are deficient in Vitamin D?

Angel_153 profile image
Angel_153 in reply toMaladjusted

Yes, quite!

40,000 ius a day for 10 days would send some people on here into spams of panic at the potential toxicity, but I think your doc sounds very enlightened, and as long as you're taking enough Vit K, Vit A to balance the levels of D, and enough magnesium to balance the calcium (they work sort of together and against each other, so the balance is crucial), I'm sure you'll benefit hugely. It IS important about the other elements though, so check them out for yourself :-)

20,000 once a week equates to a little under 3,000 a day, which is less than the UL set by Oz and Nz. A reasonable amount, and maybe with the full-on 40,000 a day for 10 days (which equates to 1,200,000 over a 30 day month if you took it for 30 days, which you wouldn't) is possibly a good maintenance dose to follow that big top-up.

I'm very encouraged that an NHS doc here is enlightened enough to listen to you (actually, this would be the second doc in your practice doing this for you, wouldn't it?) and to use this therapy at these levels.

Pls let me know what the test results are, and what type of D test it was. I'm really interested to know how it works out.

xXx

LindseyMid profile image
LindseyMid in reply toAngel_153

If your comment about "panic" refers to comments made by the Admin/Volunteers team, I'd like to point out that all we have said is that it is potentially dangerous to take high doses of vitamin D without medical supervision.

It is possible to overdose on high level vitamin D supplements, so these should not be taken without medical supervision and blood testing.

Angel_153 profile image
Angel_153 in reply toLindseyMid

Hi Lindsey,

No, it wasn't :-)

As I have said in other posts, I am not intending to take high dose D without the appropriate testing. I'm just surprised that my usually very on the ball surgery haven't suggested testing my D levels before, because I'm osteoporotic, and on Ad Cal D3. They check my calcium levels on a regular basis, and I get the odd DEXA scan, but on the whole, they don't seem too interested in my bones !

I do know it's possible to overdose on D - as indeed it is possible to do with pretty much anything, however innocuous the substance seems. Remember Leah Betts? Looking at the studies that have been done, and hearing what doses other people have been put on for the long term does make me question the validity of the current UL.

Given that I am a) osteoporotic, b) never get outdoors, c) started to get receding gums since starting Ad Cal, and d) have borderline high calcium bloods (the latter two points indicating that the calcium isn't getting into my bones, obviously - or worse, is actively being pulled out of my bones through lack of D or K), I consider it a pretty safe bet that I am D deficient.

What's particularly interesting to me is that when patients are tested, the levels the docs are looking for us to be at are the same as in this chap Azziz's book - and I've since found other books with the same references as to testing range, and also the studies cited. In order to reach those optimal levels, the docs prescribe these large doses of D.

I rang the surgery again this morning (not the best time of day for me) at 8am to try and get an appointment with my GP, but he was out today. I will ring again tomorrow, and the next day, and the next, until I manage to get that appointment. I haven't seen him for a couple of months because I've been struggling badly. It's been as much as I can do to get to the surgery and collect my monthly raft of drugs. BUT, I do realise it would be an act of stupidity to take high doses of an accumulative substance without medical supervision, and it was not my intention to indicate that I was going to do this without being monitored - I'm keen to document any improvements gained through D supplementation, or any other theories that me and GP test out on a fairly regular basis - and blood tests will only provide proof of that - or not, as the case may be. I'm big on proof, because then it's something you can go to the medics with.

xXx

I will, of course, keep everyone informed.

Angel_153 profile image
Angel_153 in reply toAngel_153

PS

I wouldn't be able to take this as I am allergic to nuts ! :-( It would all come straight back up on auto-eject from my stomach! Bummer! LoL

xXx

Maladjusted profile image
Maladjusted in reply toAngel_153

I believe there is a vitamin D capsule available with a different carrier oil, but again, only available on prescription

Angel_153 profile image
Angel_153 in reply toMaladjusted

Oooh, really? Do you know what it's called?

xXx

LindseyMid profile image
LindseyMid

I posted this on your other thread on this subject....

Actually, too high vitamin D levels in your blood are toxic and can cause severe damage over time:

ncbi.nlm.nih.gov/pubmedheal...

This is why you should not take more than the recommended daily amount without being diagnosed with a deficiency through blood testing. And if you're on very high doses, your blood levels should be rechecked regularly.

Angel_153 profile image
Angel_153 in reply toLindseyMid

Hi Lindsey,

I appreciate your concern -

According to Dr Brewer (a GP with an interest in natural medicine with many books to her name) - "The upper safe level for long-term supplements is suggested as 25mcg per day (1,000 iu's). This generally considered too low, however. An upper safe level of 50mcg (2,000 iu's) has been suggested by the European Food Safety Authority and in the US, while an upper safe level of 80mcg per day (3,200 iu's) has been set in Australia and New Zealand"

So, 2,000 iu's for northern, unsunny Europe, but 3,200 iu's for NZ and Oz ? That makes me question the level at which we are told that toxicity occurs. How else would it make sense to have a higher limit in far sunnier countries where D3 synthesised via sun-skin exposure is certain to be higher than in a north European country like ours unless either us or them are being given false information?

A further consideration (other than sun exposure and opportunity in the case of D)when looking at RDI's and ULs is that not only do different governments have different opinions, and different countries have different levels of minerals (the UK stopped using selenium-enriched flour from the US for all our bread - thanks to the EU - some years ago, since when selenium deficiency hypothyroidism has become a real problem in the UK because our soil selenium levels are known to be low, especially up north, from memory) but also that these RDI's are only sufficient to prevent full-blown deficiency states (like rickets or scurvy), and further, they work on the principle that everyone is fully healthy, with no health challenges or digestion impairments, is active, and eats food grown or raised on properly nutrient rich soil. They are not the level required for optimal health.

Dr Brewer goes on to say that toxicity can occur at intakes exceeding 500mcg a day, which is 20,000 iu's, so twice the protocol that I'm proposing to follow.

Please see my other posts about this for more information on how to take D with the necessary other nutrients in order for it to be safe and effective. It shouldn't be taken in isolation. Not only should it be used in conjunction with calcium and Vit K, Vit A is also important for the correct utilisation of D, and magnesium levels have to be in the right ratio to the amount of calcium taken.

Thanks for your reply,

xXx

Jeniwren profile image
Jeniwren

The ONLY reason to take high doses of Vit D are if you're deficient....I am and my GP put me on 2000iu daily for 2 weeks and then 1000iu daily. I will need to take it for approx 9 months of the yr as I don't get enough sun to get it naturally.

Angel_153 profile image
Angel_153 in reply toJeniwren

Me neither, given that I'm indoors or in bed 99% of the time!

xXx

Angel_153 profile image
Angel_153 in reply toJeniwren

Hi Jeniwren,

I think the general premise is that the vast majority of us ARE Vit D deficient - vit D tests are not routinely performed, at least not at my surgery, who are generally very good. I have osteoporosis and am prescribed Ad Cal D3 for this. They check my calcium levels and do the odd bone mass density test, but no-one has ever suggested checking my D levels. I am going to specifically request the D test. Even though I've been taking 5-10K ius for a few days (prob a few weeks by the time I get the test arranged), I'm sure it will still come back well below optimum levels.

xXx

LindseyMid profile image
LindseyMid in reply toAngel_153

Many doctors are still not current on knowledge of vitamin D deficiency (and how widespread it is). However, with so many aspects of having a chronic condition, you have to be an expert patient. There's no reason not to ask your GP to run this test, as you're going to do.

We're not "panicking" by saying that members should get their levels checked before taking very high doses of vitamin D. Although many are likely to have sub-optimal levels (just because of how common that is) some will not.

Angel_153 profile image
Angel_153 in reply toLindseyMid

Yes, I realise that. My GP is usually very good at taking slightly unconventional routes and theories onboard, and trying them out, so fingers crossed he'll be open this. I anticipate he will be.

I am told by my docs, all of the decent ones who don't object to a patient having some medical knowledge, that I do actually fall into the category that you mention. I've been actively researching my "mystery illness", which was only finally dx'd in 2011, since c.1997. I also used to work for a private doctor as his nutritional consultant, with a special interest in thyroid and adrenal function, and used to be self employed in the same capacity, too.

You might not "panic" at the idea of high dosing, but there are plenty of people who do!

And of course it isn't going to apply to everyone. My original question was looking to find out if other people had taken high dose D, and if so, what improvements they'd seen as a result. I didn't intend to open a debate about dosing levels or relevance of application, or validity of current UK ULs. Nonetheless, it's only right that, as a moderator and fellow human being, you should voice your concerns, and I appreciate that. :-)

A

xXx

m2neotech profile image
m2neotech

Indeed.. I will be trying a radical dosage of D3 along with a few other supplements in order to combat my Type 2 Diabetes, Testosterone Production and general Psychological health. Will be taking 10000 iu per day, along with COQ10 @ 400mg, A Super Complex B supplement and a DHEA @ 50mg supplement. I figure along with my venture into weight lifting 'Body Building', getting more active and positive thinking, my conditions should improve favorably. :) I am 49 years old, from Canton, Ohio. USA. Stay tuned.

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