Vitamin D?

[oldakasha]

I was wondering how many of you that have MS also have had a vitamin D defficiency? Also do any of you that have MS have an issue with low white blood cell counts?

[MS Mommy]

I haven't had my D tested. But I did just get my girls, ages 7 & 9 tested. They are both low.

Under a doctors supervision I am starting them on extra D vitamins, and skipping the sun screen occassionally.

[Ted Hutchinson]

Direct MS org (http://www.direct-ms.org/supplements.html) suggests that everyone with MS should be taking 4000iu a day as a basic essential. The links page of The Vitamin D Council website (http://www.vitamindcouncil.com/) has various cheap sources of an effective strength. To achieve a 4000iu/d average using 5000iu capsules simply take 5 one week and 6 the next.
The presentation by Vieth here (http://www.insinc.com/onlinetv/directms13oct2005) is a good basic introduction to the need for Vitamin d at an effective level. He ends the hour and a half talk with a suggestion for supplementation at a relatively modest level. Given the research since that talk happened, particularly for people living above latitude 45 I'd rather encourage a generally higher level of supplementation. See Risk Assessment for vitamin D3 (http://www.ajcn.org/cgi/content/full/85/1/6) and you will see just how safe it is.
If you can regularly get 20 minutes full body sun exposure then supplementing at this level may not be necessary through the year but I always take 5000iu if I don't get the chance to get outside in the sunshine during the day.

[BBS1951]

Hey Ted. We've talked before on another thread somewhere . I've been upping my sunshine to improve D3 in light of osteopenia, to enhance absorption of calcium and so forth. Florida is an easy place to do so.

Roughly speaking, if I lie in the sun for about 15 minutes, how many days per week do you think its necessary to boost my D3 since I've decided not to tempt my sarcoidosis by adding D3 and calcium supplements. I'm relying upon food and sun.

[oldakasha]

So vitamin D defficiency is a common problem with MS?

[Ted Hutchinson]

So vitamin D deficiency is a common problem with MS?
Shows the risk of MS is 62% lower among individuals in the top fifth of vitamin D (http://www.medscape.com/viewarticle/549668) It is likely that those people who shun the sun in youth are most likely to avoid it in later years. However in the UK Vitamin D status is generally worsening as more people overuse sunscreens/sunblock and SPF cosmetics and generally stay indoors, or in their cars rather than walking cycling but in the Winter 9 out of 10 UK adults are low in Vitamin D and in the Summer it remains as 6 out of 10.

There is a school of thought that links Upper respiratory infections to Multiple sclerosis attacks so avoidance of colds etc seems common sense and this is best done by Ensuring you keep your Vitamin d status high (http://www.medicalnewstoday.com/medicalnews.php?newsid=51913) People who keep their levels around 50 ng/mL, 125nmol/L don't get respiratory infections very often and if they do, they are mild. This is because vitamin D dramatically increases the amount of naturally occurring antibiotics (antimicrobial proteins) in your lung and respiratory tract. We are far more prone to colds/flu in the Winter when our Vitamin D status is low so maintaining high vitamin d status by using a safe sensible level of supplementation is very important in reducing the risks that may lead to further progression.

[Ted Hutchinson]

Roughly speaking, if I lie in the sun for about 15 minutes, how many days per week do you think its necessary to boost my D3 since I've decided not to tempt my sarcoidosis by adding D3 and calcium supplements. I'm relying upon food and sun.
If you look at Wiki here is says (http://en.wikipedia.org/wiki/Sarcoidosis)
Sarcoidosis frequently causes a dysregulation of vitamin D production; extrarenal (outside the kidney) production can be marked. Production of vitamin D goes on outside the kidneys[3]. Specifically, macrophages inside the granulomas convert vitamin D to its active form, resulting in elevated levels of the hormone 1,25-dihydroxyvitamin D and symptoms of hypervitaminosis D that may include fatigue, lack of strength or energy, irritability, metallic taste, temporary memory loss or cognitive problems. Physiological compensatory responses (e.g. suppression of the parathyroid hormone levels) may mean the patient does not develop frank hypercalcemia.

So although I would normally say 3 sunbathing sessions a week should be sufficient I suspect you will have to monitor your Vitamin D status more accurately. Have you considered using the Vitamin d test service available from the Vitamin D Website (http://www.vitamindcouncil.com/links.shtml) but as you cannot rely on your own skin to make a sensible amount of vitamin D you may find using cholecalciferol on it's own more reliable however I think you need to discuss your catch 22 situation of keeping your Vitamin D status ideal for both MS and Sarcoidosis at the same time with someone with more medical knowledge of both conditions than I have. Sarcoidosis is mentioned in This risk assessment for D3 (http://www.ajcn.org/cgi/content/full/85/1/6) and it appears the levels needed for good MS control should not be excessive for Sarcoidosis. It may be worth putting your query to Dr Cannell at the Vitamin D Council or to Ashton Embry from DirectMS org as they will probably have come across someone else with both MS and Sarcoidosis before.

[pals1107]

Ted, very interesting. I just had a repeat CT scan of a granulous lung nodual, and enlarged hilar lymph nodes, (don't have the results yet). My V-D 3 is 21, calcium a bit high. I have just about all the symptoms of sarcoidosis, and or MS. I am hoping a new internist will help get this sorted out. I had to leave my old internist because he didn't want to follow up on the lung stuff although the hospital requested it he wouldn't even read their report or schedual me to come back.
Pat

[BBS1951]

Thanks for taking the time to respond Ted. The reason I'm interested in D is not for the MS, its for my osteopenia bones. But your points are well taken. I guess I can ask my doc, but it seems that docs are kindof not too informed when it comes to Vitamin issues. Maybe my best bet is to send a letter to the doc at Mayo who managed my Sarcoidosis. thanks again.

[Ted Hutchinson]

Vitamin D levels in people with multiple sclerosis and community controls in Tasmania, Australia. (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17426912)A high prevalence of vitamin D insufficiency was found in MS cases and controls. Among MS cases, increasing disability was strongly associated with lower levels of 25(OH)D and with reduced sun exposure. Cases with higher disability (EDSS > 3) were more likely to have vitamin D insufficiency than controls (OR = 3.07 (1.37, 6.90) for 25(OH)D </= 40 nmol/l), but cases with low disability were not (OR = 0.87 (0.41, 1.86)). CONCLUSION: The strong associations between disability, sun exposure and vitamin D status indicate that reduced exposure to the sun, related to higher disability, may contribute to the high prevalence of vitamin D insufficiency found in this population-based MS case sample. Active detection of vitamin D insufficiency among people with MS and intervention to restore vitamin D status to adequate levels should be considered as part of the clinical management of MS.


Bear in mind that OPTIMAL levels of Vitamin D are 50ng/mL or 125nmol/L
and take account of the fact that Hobart is latitude 42S and as the sun shines brighter (less pollution and orbit of earth mean they get 10% more UVB than the equivalent lat in the Northern hemisphere)
It follows that if Tasmanian MSers are not only more likely to be Vit d deficient than controls but the lower the Vit d status the more disabled they were.
So the warning must be to ensure you keep your Vitamin D status high if you do not want to current level of disability to worsen. (and that applies to everyone MS diagnosed or not)