We need a thread or two devoted to theories of how disruption of Vitamin D activity can lead to disease. I have invited others to discuss thier views in a dedicated thread, but have not been taken up on the offer. There are two main views out there regarding the very common finding of low D3 levels in people with autoimmune diseases and with MS
1) The low D3 is itself one of the triggering factors in causing disease. This may be from a genetic dispostion to poor absorption and/or possible inadequate exposure to the UV rations needed to synthesize Vitamin D in the skin.
2) The low measured D3 levels are a secondary effect of another disease process and have nothing to do with taking in or synthesizing too little Vitamin D, but rather over-activity of the most active form of Vitamin D.
I got too say that I have wondered about this for some time now, Living way up here in Alaska with are long cold winters with very low hours of daylight till summer hits but with the poor summers that we have been having lately, we have been wearing a light coat for the most part so with us getting very little UV's needed why are doc's just don't get it, that MS is a part of living here and most of the ppl here tell you to go down too the lower 48 to get a real dx
I was born in southeast Texas, near the coast, and as a child spent a lot of time out in the sun. I also ate a lot of fish, and drank a lot of Vitamin-D fortified milk. I've always been light-skinned, which means that I get plenty of vitamin D with fifteen minutes of exposure. (Vitamin D3 is made in the skin when ultraviolet light reacts with something called 7-dehydrocholesterol.)
Every year I would try to get tanned, which meant laying in the back yard with a swimsuit on, basting and turning my poor body, trying to get my skin to tan. This went on for much of my life, until I turned thirty or so, and I started having lots of freckles and little weird moles every time I got a sunburn.
I think my first symptoms happened when I was twelve years old. What this sounds like to me is that I have a genetic inability to manufacture vitamin d.
I'm not sure if this is important, but I also have vitiligo, which follows the trigeminal nerve of my face on the right side.
My vitamin D is low. Not sure which one (didn't know there were different vit d) but it was hydroxy something.
With my liver disease, primary sclerosing cholangitis, people can become deficient in fat soluable vitamins. So that may be the cause. But since it is an autoimmune illness I could have had low Vit D before that was just never checked.
I have been taking 50,000 iu of vit d weekly for 3 months and just got my re-draw done. Interesting point. They said the theraputic level of Vit D is supposed to be 30 or 34 (something like that) or higher and mine was 21.
The upper limit for D3 blood levels used to be 15. Then recently, in the past twelve months, the desired level was boosted first to 30, and now some labs are at 50 for the optimum blood level. Anyone with a neurologic or auto-immune level needs to have their D level at 50 - 75.
D1 and D2 are not nearly as important as D3. D3 is a direct modulator of the immune system and also helps with neurologic function. NYU was quite happy that Craig takes 15,000 units a day of D3 and has his level at 53 so far.
nikki: that doctor who told you that D3 will damage your liver is mis informed. The latest medical research has shown that people do not get toxic effects from D3 until their level is at 95-100 in the blood. That amount is extremely rare today, with dimming of the planet from pollution and the frequent use of sunscreen as well as people spending more time indoors.
Please everyone, get your D3 level checked and supplement if necessary. Many medical studies have been released this year showing a direct correlation between low levels of D3 and breast, prostate and colon cancer, as well as dying an early death from cardiovascular diseases. And most importantly to this forum, low levels of vitamin D3 have been implicated as a possible cause of MS. And some studies have shown that D3 supplementation can help slow the progression of MS.
Hmmm... this sounds interesting, and I'd love to have my Vit. D and B checked, but HOW? Do you just ask? My doc's aren't too happy to test anything, so is there anything other way to get it checked? I have stomach and intestinal trouble, so I wouldn't be too surprised at all in many of my vitamins and minerals were way out of wack, due to me not being able to absorb them corrrectly.
Sunny, they should have run some tests initially when you went in to Dr. WTF to eliminate heavy metal poisoning. That should have included vitamin levels and thyroid, too. I wouldn't be surprised if they hadn't, though, considering how much trouble you're having with this neuro.
Funny that you brought this up because my little brother (in his first year of med school this year) spent all last year studying vitamin D with an extremely well-known doctor who is an expert in this field. His recommendation to me after working for a year is that I should be taking 1,000 IU a day. Interestingly, this year my specialist in Boston (who I trust completely and she is the only doctor I say that about) has just started recommending that her patients take 800IU a day. The research is out there. No one is getting enough but MS patients specifically should be taking supplements...
Of course, don't ask me to explain why. My brother is much better at doing that! Maybe I'll try to get him to post something for me on this thread.
I enjoy following these types of threads . . . and although I don't have any other knowledge about Vit D, I wanted to comment that it seems like a day doesn't go by where I don't see some sort of "article" or "reference" to the health benefits of Vitamin D.
I guess this means that very soon we'll be seeing Vitamin D showing up in everything . . . cosmetics, body lotions, fortified foods etc . . .
Vitamin D, is not actually a 'vitamin'. It is actually acts like a hormone. Hormones are important in many functions of the body and deficit of any hormone leads to a cascade of other ill effects. Vitamin D pharmacology is fascinating.
Parathyroids control calcium levels in the body, vitamin d is critical to this control. People who lose their parathyroid glands through surgery or injury of some sort will have a very difficult time controlling their calcium levels. In order to do this they have to take high dose vitamin D3, and calcium.
I was initially diagnoses with parathyroid problem in about 2000, and was on the active form of vit D3 (calcitriol) for about 18 months, after which my calcium levels normalised and I was able to stop the D3. When I was having my most symptoms (about 15 months ago), i was also having a lot of sun exposure. My Vit D levels were eventually tested and were found to be high. About twice the maximum lab range. Can only presume that was good. Hasn't been tested since then.
Low D, is also seen in Thyroid disease and celiac. Also autoimmune-related diseases.
I'll put in a link below to an article by Friedman.
On the other hand, there are some diseases that are associated with high vitamin D. Sarcoidosis is one.
Howdy folks....I'm your resident speech geek and Lyme positive. I had a vitamin D deficiency prior to diagnosis. My levels came back to normal after several months of treatment (50,000iu 3x per weeek) .I recently relapsed in my lyme symptpms because of a change in treatment and my vitamin D deficiency also came back. I'm on 50,000iu 1x per week and I go today to get my levels checked. A side note... my EBV and CMV titers are also off the charts and were coming down as I responded to treatment. I would love to know where they are now.
I too am from the south and spend lots of time in the sun. When my last labs came back deficient I was sporting a rather nice tan.
My level was a 7. I am very nervous now because this can be linked to MS. The doc started me on 50000 IU of Vitamin D for the next 2 months. I really hope that this helps me to start feeling better. I am praying for a miracle.
i recently found out that my vit. d was very low. i am on 50k IUs every 5 days for 6 weeks. then i have to get it checked again. My calcium levels were normal. I live in Georgia was out in the sun everyday, working in the yard, and tending to my farm. which has to be done everyday no matter if I feel like it or not. So what would cause me not to absorb it. Will I have to take supplements from now on. and will this lead to an autoimmune disease or ms. I have had problems throughout my twenties. now in my thrirties not looking much better.
It is not clear why some people with obviously more than adequate sun exposure do not absorb it correctly. Low Vit D is extremely commmon in many autoimmune diseases, including MS which is where you have posted. Most thinking is that the something causes the low Vit D and that preceeds the disease - but we really do not know.
Your history does not sound like MS. MS does not cause fever nor join pain. I would recommend that you be worked up by a very good rheumatologist. I would also recommend that you have at least two Western Blot tests for Lyme disease - as many of the symptoms and problems you have are seen in untreated Lyme.
thank you for your post. I have brought lyme disease up to the dr.s they look at me like I am crazy finally though the last dr that found the vit. d deficiency said she would test me for lyme if she could not find anything else wrong. She told me that lyme disease was not in GA. I pick ticks off my head on a regular basis live out in the country. in fact last summer my lymphnodes swelled up and i kept a sore on my head for 3 months after pulling a tick off. Again noone would test me for any tick born infections. I am going to ask my new dr to refer me to a rheumatologist. Or an infectious disease dr. I just want to feel better. the problem is i have to be referred for my insurance to pay. thank you for your input Heather
I started taking a calcium suppliment after my first round of solumedrol in February. I chose one with 1200mg of Calcium and 1000IU of Vit D. Who knows if it is working, but I guess that it can't hurt. I live on the Gulf Coast. Since I turned 18, I have been living under a blanket of sunscrean. I have light skin and freckels. I do remember that I would tan easily until puberty.....
my neuro put me on vitamin D and calcium supplements, He just said it would be good for me to take, I know that at the moment I research team is doing an amazing lot of work with vitamin D research and MS patients and they have found a link with vitamin D. Majority of the people tested were low in vitamin D from memory.
I live where it is damn cold, so we are not as inspired to go out in the sun as much as other people.
Earlier this year I came across an article about Vit D and autoimmune diseases. Basically what it said that in the womb was the critical time for vitamin D levels to be normal. At this time the immune system was developing and lack of vit D had the greatest impact ,also through the mothers vit D levels in general, and the mothers immune system in general. I am a bit vauge on the detail and I think from memory I started getting info from the vitamin d council web site. I got the impression that in the womb and very early in life were the times that influence autoimmune rather than e.g 5 years old onwards, that low levels in later life were more of a secondary process or effect. Lately I have been ready about the natural protein diet from 'The China Study' by T. C. Cambell. He is recommending after very good reseach that animal protein my have an influence on MS, partictularly regarding cows milk feed babies. Again an early life influence on the development of the immune system, which with genetic flagging, can set one on a path of poorly developed immune system. I am trying to get a copy of his book as there is a limited amount of info on the net.
Best wishes to all, Nigel
My neuro didn't even mention anything about Vitamin D to me.It look's like it is very important in helping with MS...I may have to go and get some blood tests done! Would there be a reason he hasn't mentioned it? Could some people need it more than other's?
I got blood work done back i July and my Vitamin D was low so the dr. put me on Vitamin D 1.25 mg softgel 1 pill once weekly for 6 weeks i took one pill and had the worst headach of my life and have not taken one sence am trying to drink lots of vit D milk and some sun and yes i do have MS and am very pale and do not tan at all even when i went to tanning bed just burnt realy good lol my vit D was 14 i think the dr. said i have no clue what that means or what is normal so any info would be helpfull
I have 3 children all have asthma. I was wondering if my low vitamin d could be the cause of this. My vitamin d is low and i suspect it has been low for quite some time. I lost all of my teeth in my early twenties. I was wondering also if i am genetically predisposed to any conditions that could cause vitamin d deficiency. Both of my parents are on vit. d supplements. My father had rickets as a child. I work outside so I do not understand why my vit. d is low and also my oldest son is now passing out like I use to. The dr.s always blamed caffeine with me but my son does not drink caffeine. His pediatrician seems to think it is just puberty. My question is could there be a genetic disordrer that would cause you not to absorb vitamin d. We both have a very high metabolism. I just do not want my children to go through the pain and suffering that i have went through. I am going to insist they check his Vitamin D levels. I also Had a cousin diagnosed with MS he passed away in his 50's was disagnosed in his thrities. They said his was due to rheumatic fever as a child. I think there is more to it though. And alot more research needs to be done on vitamin d and the effects of it.
any knowledge would be appreciated
Genetic study shows direct link between vitamin D and a gene associated with MS
An MS Society funded study published today indicates that there is a link between a gene associated with MS and Vitamin D, which may have an affect on the risk of developing MS.
MS is a condition that is thought to be caused by both genetic and environmental factors. For example, certain gene variants are known to increase the risk of a person developing MS (genetic factors). In addition, people living at higher latitudes and in areas with low exposure to sunlight are more likely to develop MS (environmental factors).
A study published today shows that conditions in the environment may influence how genes behave which could in turn impact on the risk of developing MS. A research group led by Prof George Ebers and Prof Julian Knight at the Univeristy of Oxford looked at how Vitamin D in the body can affect a gene that is linked to MS, called HLA-DRB*1501.
More specifically, these scientists discovered a region of DNA near the gene HLA-DRB*1501 that responds to Vitamin D and changes the gene signal. When there is plenty of Vitamin D in the system, strength of the gene signal (gene expression) is strong. In contrast, when there are low levels of Vitamin D in the system the strength of the gene signal is weak.
In theory, a weak gene signal in the uterus before birth and during early childhood could mean that the immune system develops differently and produces the harmful T cells that cause the damage to myelin in MS. Therefore, a deficiency in Vitamin D before birth and during early childhood may increase the risk of developing MS.
Dr Doug Brown, Research Manager at the MS Society, said: “It’s important to keep in mind that MS is a very complicated condition that is caused by a combination of environmental and genetic factors that may or may not be inter-linked. This research is very interesting and it’s the first study that shows that environmental and genetic factors may be linked, but more work needs to be done to determine the relevance of this to people with MS and find out what other environmental factors may be involved.”
"In people with the DRB1 variant associated with MS, it seems that vitamin D may play a critical role," says co-author Dr Julian Knight. "If too little of the vitamin is available, the gene may not function properly."
Professor Ebers and colleagues believe that vitamin D deficiency in mothers or even in a previous generation may lead to altered expression of DRB1*1501 in offspring.
The authors hypothesise that this gene-environment interaction may affect the ability of the thymus, a key component of the immune system, to perform its regular tasks. The thymus produces an army of T cells, which identify invading pathogens, such as bacteria and viruses, and attack and destroy them. There are millions of different T cells, each designed to recognise a specific pathogen, but there is a risk that one type might mistakenly identify one of the body's own cells or proteins.
Ordinarily, the thymus will regulate the T cells and delete those that pose the greatest risk of attacking the body's own cells and proteins. However, the researchers believe that in people who carry the variant, a lack of vitamin D during early life might impair the ability of the thymus to delete these T cells, which then go on to attack the body, leading to a loss of myelin on the nerve fibres.
And from DR Kantor
The question may be split into several questions:
1. Does Vitamin D deficiency lead to MS?
2. Can supplementing with Vitamin D treat MS?
3. What is the correct dosage of Vitamin D?
My answers are below:
1. The data surrounding Vitamin D has a long history but it received recent press when the blood from soldiers entering the military were looked back at later and it was found that those with a low Vitamin D level were more likely to go on to be diagnosed with MS int he future.
This suggests a possible association, not necessarily a cause and effect.
Low Vitamin D levels are associated with many diagnoses, including Parkinson disease.
2. Even if a low Vitamin D level in childhood contributed to the development of MS, the question is whether supplementing it in adulthood repair the damage already done and destined to happen (because the MS has been set into motion) or would it be "too little, too late."
3. The RDA is 400 IU. Some people suggest increasing that to 800 IU to 1000 IU. Doses of 10,000 IU or greater should not be given for longer than 6 months because Vitamin D can be toxic.3000 IU is on the high side and I cannot comment on it for you because I do not know your particular situation and it sounds like you are not only trying to use Vitamin D as a treatment for MS, instead you are trying to replete your low levels. I highly recommend that you see an endocrinologist.
Oral Vitamin D reaches a physiologic steady state in approximately 2 months -- so it takes that long to be up to a good level.
Since I began this thread I have come across good scientific data that the highest safe daily dose is quite a bit higher than you post. In a hard science review, the Linus Pauling Institute for Micronutrient Research at the Oregon Health Sciences University they give very cogent reasoning for this determination. I have since seen the same opinion elsewhere, but can't be certain that the second group was not relying on the LPI.
I myself, take 6,000 IU dialy and am inching toward a more acceptable level.
The reasoning that use of Vit D after the development of MS is "too little, too late" always made sense to me, and I have maintained that this was the case until recently. In a recent issue of Neurology Reviews in July they described a study published by the Consortium of Multiple Sclerosis Centers showing the very high doses of Vitabin D appeared to have a slowing effect on the progress of the disease.
"Among patients who received a mean of 14,000 IU/day of vitamin D3—which is more than three times the daily amount recommended by the FDA for many adults and included doses as high as 40,000 IU/day—16% had a relapse, compared with 38% of controls who had taken an average of 1,000 IU/day, reported Jodie Burton, MD, a neurologist at St. Michael’s Hospital, University of Toronto, and colleagues at the 23rd Annual Meeting of the Consortium of Multiple Sclerosis Centers (CMSC)."
You can read a little about this study at:
They used large doses for most of the yearlong trial. "Dr. Burton and colleagues sought to determine whether vitamin D could have a positive impact on patients already diagnosed with MS and what a safe and effective dose would be. The randomized controlled trial included 25 patients on an escalating dose regimen of vitamin D3 and 24 control subjects who took an average of 1,000 IU/day. The dose of vitamin D was escalated for six months to 40,000 IU/day and then was de-escalated down to zero, for a mean of 14,000 IU/day, with about 70% of the year spent at 10,000 IU/day or higher. All participants also received 1,200 mg/day of calcium throughout the trial. "
It appears that the info on Vitamin D is evergrowing and I was behind the hounds for a long time.
I have MS and low vitamin D,which was initially discovered by my Rheumatologist. When first drawn last spring it was 28 which is not all that low, but after taking vitamin D for 8 weeks a high dose I think 50,ooo? It was a green gel cap. ANyway, after 8 weeks on supplements, my level dropped to 23. After sitting in the sun all summer, I was only able to bring my level up to 30. Not it's too clod to sit outside, so I am concerned about my levels over the winter.
At first my Neuro said that I was not absorbing the D from the supplement, but after sitting in the sun, it appears I am manufacturing inadequately as well? I also have full-blown osteoporosis, so this really concerns me because I am not able to take any of the meds for that and the MS has been causing me to fall as of late.
Anyway, I have read the Marshal Protocol and he thinks that the autoimmune disease itself disables the body's ability to produce and absorb D. I think at least for me, low D did not cause my disease, but is a result of it. It seems that neither supplements nor sunshine are helping me at this point.
I am glad you brought up the subject, because I do not think much is known about it and it will really make a difference to find out which comes first, the low D level or the disease.
Hi. My internist checked my D level on my third day into the D3+calcium cocktail and it was fine. Never one to waste time I jumped in at 6000 D3+calcium+vit K. I think I was at 12k- 14k within the week. Unfortunately I am not getting the 'kick" others are and there are many doing the experiment.
If you are taking higher does may I suggest you add the Vitamin K as it is needed to work synergistic with the D3+calcium combo, otherwise you won't get the full effect.
Don't feel bad, people don't realize as soon as they put sunscreen on, they lose the benefit of the sun vit D3. You only need 10 mins of sun. Very few people are actually deficient and tend to be the elderly and infirmed. The fortified kind you get from food is D2 which is different.
My old neuro told me and I have seen studies where MS is more prevalant in countries closer to Artic. Now, I also have a doctor who just told me they have high incidence of MS in Cleveland for reasons they can't understand. Others who live in colder climates and move to say Florida seem to have marked improvement. (I'm stymied with that logic being one who is heat intolerant).
So I wouldn't be so quick to judge on the vit D. Maybe your bodies are made to grab all the vit D in your 24 hr summer days! One of these days I have to go up there for the experience. :)
justr saw this - i take 16,000 to 20,000 ius a day on my 6th month it even like wakes you up!! it is amazing!!! thats d3 with calcium have to take it every 4 hours so i take around 6,000 at a time- no you dont think drs told me LOL!! found this out on the net drs dont know,, its not approved yet on how much -it would vary with everyone on how much - my sis. has osteop. and i had her try them she said they were -just short- of a miracle!!! -glad i told her!!! tick
My GP prescribes 6000iu per day for me. I've been at this dosage for a while now, following testing last yeat that indicated I was mildly deficient. I am in the normal range now. Although this amount is still considered to be safe based on the current research, I do have my liver function and Vit D levels tested 2x per year.
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