Stop Vitamin D ?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby shye » Thu Nov 18, 2010 5:14 pm

TMrox,
be careful when you give advice--I am in the US, and according to the article you quote, the Us uses ng/ml, whereas you in the UK use nmol/L--and for ng/ml, my 44 is in the optimal range, which is 25-60. (your optimal is 50-150).
also, a number of futher quotes from the article, that would indicate I am actually a bit too high with the 44:
Michaelsson K found that in elderly men the mortality rates were increased at both high and low vitamin D levels, and the lowest mortality was seen with vitamin D between 24 and 34 ng/mL.
Another study (Dobnig H) from Germany found lower mortality in people in the top 25% of vitamin D levels, compared to those with the lower 25%. The overall levels, however, were quite low; almost everybody was lower than 33 ng/ml.
....The Vitamin D Pooling Project included 10 cohorts around the world, and studied between 500 and 1300 cases of less common cancers: endometrial, kidney, lymphoma, ovarian, upper GI, and pancreatic. There was no benefit of higher vitamin D in any of these cancers. Of concern, however, was an increased risk of pancreatic cancer when the serum vitamin D level was greater than 40 ng/mL (100 nMol/L).
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Postby TMrox » Fri Nov 19, 2010 5:08 am

Shye,

I got tested for vit D levels in the USA with the ZRT lab (vitamin D council).

My vit D levels are 29ng/ml and according to my lab report the optimal vit D level is 50-80ng/ml.

For optimal levels of Vit D according to ZRT lab see:
https://www.zrtlab.com/view-document-de ... min-d.html

Here another document discussing the issue around optimal levels of vitamin D:
http://ods.od.nih.gov/factsheets/vitamind/
Last edited by TMrox on Sun Nov 21, 2010 5:28 am, edited 2 times in total.
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby TMrox » Fri Nov 19, 2010 9:36 am

Going back to my second post in this thread.

I said that the safest is to be checked for vitamins, minerals before taking any supplements.

I know now I'm low in vit D 29ng/ml. My hair tissue analysis confirmed today:

My magnesium levels are normal. No metal toxicity (mercury, aluminium, lead, etc), great!

I have high levels of copper (which my docs already knew from blood samples) and I have high calcium levels (which had shown normal in my blood samples).

The lab report says:
The tissue calcium level is significantly higher than normal. This does not necessarily indicate that there is too much calcium, but rather the calcium is not being utilized properly. Factors that contribute to high calcium:

*Endocrine (which my docs already ruled out with lots of blood test) low thyroid and adrenal activity in conjuction with a relative increase of parathyroid function.

*Nutritional (the most likely in my case). Inadequate protein intake, excessive sugar and refined carbohydrate intake.

*Increased requirements of other vitamins and minerals such as vitamin E, phosphorus and vit D.

I've been given a list of foods to avoid and to take to correct these mineral imbalances. I've been told not take calcium supplements or in fortified foods for three months. I will get retested then to see how the calcium/magnesium ratio goes.
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby shye » Fri Nov 19, 2010 5:39 pm

RMrox
ZRT labs is an independent lab--potentially out to make money I would think--and they are using Vitamindcouncil.org as their mentor.
I would not take their reference range as my guide--established scientific data would be my reference--unfortunately, I got swayed by the newer scientific data from Vitamindcouncil.org, en eclectic group of scientists standing alone, and NOT backed up by established data.

the NIH data you post is NOT good in forming a reference range:
≥15 ng/ml Generally considered adequate for bone and overall health in healthy individuals [4]
Consistently >200 ng/ml Considered potentially toxic, leading to hypercalcemia and hyperphosphatemia, although human data are limited. In an animal model, concentrations ≤400 ng/mL (≤1,000 nmol/L) demonstrated no toxicity [11,14].

way too broad.
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Stick with Vitamin D3

Postby MarkW » Sun Nov 21, 2010 9:25 am

I do not agree with stopping vit D3 in pwMS. There is emerging research showing the importance of D3 to humans. Search for work from Oxford Uni with Prof G Ebers involved, if you want background. Also find the published data of natural D3 levels in Sri Lankan fishermen to get real life data.

I recommend 5000iu of D3 per day unless there is a medical reason not to do this. The cost of one capsule of 5000iu D3 is less than 10 US cents so D3 is a low cost insurance policy. Get checked for D3 levels after 3 months if you or your doctor has any concerns.

MarkW

PS I take 10k iu per day and sunbathe so I do folllow my own advice.
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby hannakat » Sun Nov 21, 2010 9:27 am

Okay, it's already becoming difficult enough to 'sift' through all the information on this CCSVI thread .... I don't have a healthy partner doing the leg work for me ..... and time and brain effort is needed to keep up with the information put into this thread....

...may I just ask why, oh why, must posts about vitamins (and other topics) be put here, on the CCSVI thread? Is it because there's more traffic here?

So, if I wasn't interested in CCSVI, but very interested in what others are taking and/or think about vitamins, I wouldn't find this information on the "Natural Approach" thread. I rely on the different threads to provide information on the specific topic and check those thread regularly. If using the 'search' function everytime to get the latest discusion is necessary... then maybe I need to find me a progressing-MS-patient-friendly site. You-all are making it just a little bit too hard for this sick, ol' gal.

~^,,^~
Trish
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Postby TMrox » Sun Nov 21, 2010 9:58 am

hannakat,

the discussion about too much calcium, stop taking vitD while the calcium/magensium rate is out of balance is related to CCSVI.

You might want to check this link to see how this started.

annb57
"Hi all i have been keeping an eye on ccsvi Kuwait website on face book for while now and they seem convinced ther the more calcium we have the more severe ccsvi, seems we need to sort this out with hair samples, to see what our levels are.they also say vit d causes us to retain more calcium, and if we lower our calcium levels we will retain vit d ourselves.they seem convinced about this through research they are doing.Just hope they publish there findings..."

http://www.thisisms.com/ftopict-14299.html

TMrox
"I've also seen the suggestions of the Kuwait team regarding calcium/vit D. See link and last comment on calcium on 21 oct
<shortened url>"


More suggestions on the Kuwait team, 11 November:

"! am happy to say that what I am saying about Calcium is the main reason of MS is true. the hugest medical disaster is from high calcium.But now the coming huge problem will be the Vitamin D because Vitamin D is Calcium retainer. We don't need more calcium that what we have in water nether cows that give 60Litre of milk a day"
<shortened url>
Last edited by TMrox on Sun Nov 21, 2010 12:26 pm, edited 1 time in total.
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Calcium and Vit D

Postby MarkW » Sun Nov 21, 2010 12:18 pm

I have grave concerns about anyone saying reduce vit D because calcium might be high. Low vit D is a major problem in pwMS in higher latitudes (not Kuwait). If calcium levels are high then treat this symptom but a knee jerk reaction of reducing vit D because calcium levels are high in the Middle East is not good general advice for Europeans and North Americans.

Endothethial health after balloon venoplasty is important so vit D advice should be posted under CCSVI.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby TMrox » Sun Nov 21, 2010 12:23 pm

I'm with you Mark.

I'll be increasing my Vit D since it is low and reducing my high calcium levels. I've got a nutritionist working with me to achieve this. We have now worked out my vit D and calcium levels and I've been given a specific diet.
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby TMrox » Sun Nov 21, 2010 12:47 pm

As Mark said "Endothethial health after balloon venoplasty is important so vit D advice should be posted under CCSVI."

Here some info that Joan has provided in 'CCSVI in MS'.
http://tinyurl.com/2flp9h4

I reproduce it below for those with no facebook.

"Low Vitamin D in neurological diseases...it's about the vasculature
We all know about the linkage of low levels of vitamin D with MS. For years, the common wisdom was that this is because vit. D modulates the immune system. But now there are more and more studies coming forward showing linkage in other neurological disorders and general brain health. And that vitamin D supplementation can protect the vasculature of the brain.

From Scientific American:
http://www.scientificamerican.com/blog/ ... 2010-07-12

"The first study, led by Paul Knekt and colleagues at the National Institute for Health and Welfare, Finland, examined levels of vitamin D in the blood of 3,173 Finnish men and women aged 50-79 determined to be free of Parkinson's disease at the start of the study. The researchers then examined the incidence of Parkinson's disease in these participants over a 29-year follow-up period. They found that participants with the highest levels of vitamin D (more than 50 nmol/L) had a 65 percent lower risk of developing Parkinson's disease than those with the lowest vitamin D levels (less than 25 nmol/L).

In the second study, David Llewellyn of the University of Exeter and colleagues examined vitamin D levels among 858 Italian men and women age 65 and older. They found that more than half of the participants with dementia were vitamin D deficient (<50 nmol/L). What's more, cognitive tests revealed that severely deficient individuals (<25 nmol/L) were 60 percent more likely to undergo cognitive decline over the six-year follow-up period. This study appears online July 12 in the Archives of Internal Medicine."


And here is news of a study at SUNY Buffalo, from earlier this spring:"Low vitamin D levels may be associated with more advanced physical disability and cognitive impairment in persons with multiple sclerosis, studies conducted by neurologists at the University at Buffalo have shown.
http://www.sciencedaily.com/releases/20 ... 153955.htm

Their results, reported at the American Academy of Neurology meeting, held earlier this month, indicated that:
The majority of MS patients and healthy controls had insufficient vitamin D levels.
Clinical evaluation and magnetic resonance imaging (MRI) images show low blood levels of total vitamin D and certain active vitamin D byproducts are associated with increased disability, brain atrophy and brain lesion load in MS patients.
A potential association exists between cognitive impairment in MS patients and low vitamin D levels."

Now, how could this situation be compounded when we consider CCSVI as a factor in developing MS? I believe it's all about protecting the brain from further vascular damage. Here's a wonderful research paper on how Vitamin D can provide "vasculoprotection" of the brain....
http://ddr.nal.usda.gov/bitstream/10113 ... 182071.pdf

"Vitamin D may help to protect against cognitive deterioration and dementia, specifically, vascular dementia and Alzheimer’s disease, through vasculoprotection (Lind et al., 1987; Burgess et al., 1990; O’Connell et al., 1997; Pfeifer et al., 2001; Wang et al., 2001; Zittermann et al., 2003; Wang et al., 2008a,b), preservation of neurons (Sutherland et al., 1992; Landfield and Cadwallader-Neal, 1998; Brewer et al., 2001), and protection against risk factors for cognitive dysfunction (Lind et al., 1987; Burgess et al., 1990; Hypponen et al., 2001; Pfeifer et al., 2001; Li et al., 2002, 2004; Zittermann et al., 2003; Bisc- hoff-Ferrari et al., 2004; Wang et al., 2008a,b).

We did observe an inverse association between 25(OH) D concentration and presence of white matter hyperintensities and large vessel infarcts; indicators of cerebrovascular disease (Buell et al, in preparation). Consistent with this finding, we observed a positive association between vitamin D concentrations and the integrity and structural arrangement of white matter fibers using diffuser tensor imaging. Further studies designed to provide information on the temporal relationship of 25(OH)D and brain morphology are warranted.
420 J.S. Buell, B. Dawson-Hughes / Molecular Aspects of Medicine 29 (2008) 415–422"


So....The underlying message is, get adequate vitamin D and sunshine. You're helping your brain, and may be slowing or preventing atrophy."
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby shye » Mon Nov 22, 2010 6:21 am

TMrox says
So....The underlying message is, get adequate vitamin D and sunshine. You're helping your brain, and may be slowing or preventing atrophy."

Agreed, but the word adequate must be stressed--getting too much is also of grave concern. If supplementing, frequent measurements of levels of D 1,25 and D 25-OH are a must.
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Postby BBE » Mon Nov 22, 2010 6:45 am

I don`t understand how too much sun/vitamin D could have been the problem of autoimmune diseases. Historically people used to live outside and get their natural max. dose 10.000 IU from sun. Autoimmune diseases have evolved in recent years and what has changed since past is that people don`t live outside anymore and not the other way around. The theory that sun harms living creatures is just unbelievable and unnatural for me.
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Postby jimmylegs » Mon Nov 22, 2010 7:27 am

a smattering of marshall discussion at TIMS:

from 2004:

http://www.thisisms.com/ftopicp-4974.html#4974

'06 TIMS discussion re marshall:

http://www.thisisms.com/ftopicp-15944.html#15944

marshall crops up again in 2008:

http://www.thisisms.com/ftopicp-42231.html#42231

and a blip in 2009:

http://www.thisisms.com/ftopicp-50435.html#50435
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Postby jimmylegs » Mon Nov 22, 2010 7:53 am

had stopped supplementing the D for a few weeks prior to testing:
results were
1,25 is HIGH at 74 (range is 19-67)
25 OH is down to 44 (range is 30-100)
So, conforms to the view that should not be taking so much vit D just on measuring the 25-OH. Quite necessary clearly to be measuring the 1,25.
(Which my dr had not done before).


FYI, relevant literature link (full text whee!):
http://www.ncbi.nlm.nih.gov/pmc/article ... 4-0075.pdf
comparing anorexic patients to healthy controls - median (range):
25-OHD (nmol/l)
anorexia: 8 (< 5-48 )
controls: 38 (13-59)
1,25(OH)2D (pmol/l)
anorexia: 70.5 (20.9-91.7)
controls: 70 (40-120)

if the (19-67) range was provided by your lab, it's more than likely just the range of test results that lab has obtained rather than an official reference range. i would tend to doubt that healthy control levels are adequately represented in that data.

in dec 2009 i requested a 1,25(OH)2D3 test because of a topical ointment i was given. the range provided by my lab (dynacare for that test) was 60-159 pmol/L. my result at that time was 174 pmol/L! and now, they have 174 in their data set so a patient will have to be even higher than that to get flagged now.

for whatever that's worth.. maybe a little peace of mind about the 74 :)
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Plenty of Vit D3 is my advice

Postby MarkW » Mon Nov 22, 2010 8:31 am

MarkW says "get plenty of vitamin D and sunshine, the positive effects are still being discovered".
Cheer wrote: "get adequate vitamin D and sunshine. You're helping your brain, and may be slowing or preventing atrophy."
I have read much on this and conclude that the positive effects of D3 are not proven beyond doubt but its worth spending a few cents/pence a day on D3.

I advise you get checked for hypercalcemia and hyperphosphatemia if your doctor has concerns about these areas. Repeated Vit D tests could be mis-leading as high levels are not understood by medics.

Thanks to Rox and Jimmy for posting data. There is lots out there !!
If anyone finds the Sri Lankan fisherman Vit D levels please post.

To summarise: I recommend 5000iu of D3 per day unless there is a medical reason not to take this dose.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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