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Vitamin D - Theories
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.
The floor is open to discussion.
Quix
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.
The floor is open to discussion.
Quix
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
Cowboy
Cowboy
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.
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.
Wow, very interesting that with all that sun exposure you still have MS. I was wondering if you have had a recent vitamin D3 blood level done?
I have lots I want to post later on this.
Elaine
I have lots I want to post later on this.
Elaine
As far as I know, I've never had a vitamin level done, but I have had my wellness bloodwork done this year, and they found nothing abnormal.
I asked my neuro about taking vit D and B12. He told me to stay away from the D because of liver. If i am remembering right. But said yes to the B12. Who knows..........
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.
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.
Elaine
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.
Elaine
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.
Thanks for this great thread!
~Sunnytoday~
Thanks for this great thread!
~Sunnytoday~
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.
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 . . .
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.
http://www.****.***
On the other hand, there are some diseases that are associated with high vitamin D. Sarcoidosis is one.
Fascinating stuff. Couldn't help but contribute.
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.
http://www.****.***
On the other hand, there are some diseases that are associated with high vitamin D. Sarcoidosis is one.
Fascinating stuff. Couldn't help but contribute.
You're right - it's fascinating! Thanks for sharing!
I've had autoimmune problems for a long time and was recently diagnosed w/ Gluten Intolerance/Sensitivity. I did not have a biopsy done - so no celiac was dx.d.
I've had autoimmune problems for a long time and was recently diagnosed w/ Gluten Intolerance/Sensitivity. I did not have a biopsy done - so no celiac was dx.d.
Here's the link. I'll try again.
Just replace the [dot] with .
www[dot]goodhormonehealth[dot]com/VitaminD[dot]pdf
Sally
Just replace the [dot] with .
www[dot]goodhormonehealth[dot]com/VitaminD[dot]pdf
Sally
Another very comprehensive link. Seems to have decent information...
www[dot]vitamindcouncil[dot]org/
They refer to Vitamin D (in it's active form) as the most powerful hormone in the body.
S
www[dot]vitamindcouncil[dot]org/
They refer to Vitamin D (in it's active form) as the most powerful hormone in the body.
S
Craig and I went to see Dr. Friedman in California. He is a very nice man and helped Craig to rule out Cushings and start thinking about MS.
In fact ,we have to consult him next week concerning whether or not Craig has enough bone density for steroids.
He is a huge fan of Vitamin D3 supplementation.
Elaine
In fact ,we have to consult him next week concerning whether or not Craig has enough bone density for steroids.
He is a huge fan of Vitamin D3 supplementation.
Elaine
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.
Rebeccah
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.
Rebeccah
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.
Good Luck.
Quix
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.
Good Luck.
Quix
Last winter I was told my Vit D was very low and the supplements helped. Now that I've been fighting severe fatigue again, maybe I should have it rechecked? How many others have had low D?
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
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