Who’s Watching Your Vitamin D Level?

Posted on May 10, 2013. Filed under: Vitamin D | Tags: |

Are you one of the 41% of Americans living with vitamin D deficiency (rates are much higher for Blacks [82%] and Hispanics [69%])?  I was.  A few months before my ALS diagnosis I had an annual checkup with my primary care provider (PCP).  Routine blood work showed my vitamin D level was an abysmal 11 ng/mL.

To put this in perspective, having a test result of 30 – 80 ng/mL of vitamin D is considered to be within normal limits, though there is a growing body of evidence to suggest that even 30 ng/mL is cause for concern.  Since 30 ng/mL is what is needed to avoid having rickets-a sort of minimal level necessary for health-my 11 ng/mL was practically like having none at all.

So what’s the big deal about vitamin D? There are receptors for vitamin D in almost all organs and cells in the body meaning vitamin D communicates with just about every bodily system.  Research suggests vitamin D has a role in healthy bones, immune activity, hormone regulation, brain health, metabolism, diabetes prevention, cancer prevention, cardiovascular health and regulating your genes.  Vitamin D deficiency might bring to mind pictures of bow legged children from pre-vitamin D fortified milk days, but childhood rickets (called osteomalacia in adults) isn’t the only health problem proper levels of vitamin D helps us avoid.  Low levels of vitamin D are also associated with:

Given the large numbers of Americans with health issues associated with low levels of vitamin D, you might expect doctors to keep a good eye on our levels.  Unfortunately, I did not find this to be the case.  After identifying my significant vitamin D deficiency, my PCP recommended I take a vitamin D supplement of 2,000 IUs per day so I did.  I also did some research and learned that when one is depleted of vitamin D they actually need higher doses to refill the reserves so I took 5,000 IUs per day (disclosure: I find average western medicine practitioners to be far more conservative about supplements than research suggests is necessary).  Eight months later I was curious how this was working so I retested.  I had reached a barely acceptable 37 ng/mL.  Not exactly the progress I was looking for.

Here’s what really troubles me about this: my health care providers weren’t showing much interest in this aspect of my health.  I was the one who requested the retest.   The PCP who ordered the first test indicating a significant problem never followed up to see if the 2,000 IUs per day she recommended was having a positive effect (some might say a 3 month follow up would have been good practice).  My ALS neurologist, who is aware that vitamin D deficiency is highly correlated with neurodegenerative diseases, didn’t do more than verbally support my choice to take a vitamin D supplement.  Here is some complicated, but supportive research conclusions about the importance of vitamin D status for ALS patients:

Vitamin D has a useful effect in ALS by suppressing of the expression of MHC class II antigens, enhancing TLRs, down-regulating PARP-1, up-regulating HO-1 expression, enhancing the expression of calcium-binding protein, and suppressing of NADPH expression. Vitamin D can also act through many non-genomic mechanisms, Vitamin D also exerts its effect on ALS through cell-signaling mechanisms, including glutamate, matrix metalloproteinases, mitogen-activated protein kinase pathways, the Wnt/β-catenin signaling pathway, prostaglandins, reactive oxygen species, and nitric oxide synthase.

Another reason I expected my neurologist to be more tuned in to my vitamin D levels is that people with ALS fall and falls can lead to bone breaks that complicate an already compromised mobility.  Vitamin D is known to reduce falls.  What’s more, breathing issues and pneumonia are the leading causes of death for people with ALS; low vitamin D levels are associated with an increased risk of pneumonia!  I was experiencing firsthand what is meant by disease management as opposed to health management (a post for another day).  Vitamin D deficiency is not a disease so my doctors weren’t paying it much attention.  But I am.

I learned that some naturopaths and others will recommend taking 50,000 IUs of vitamin D every day for one month in order to refill depleted vitamin D stores.  I double checked the safety of this and found that doing so for a short duration is not associated with problems so I went for it.  With the help of an at home testing kit from the Vitamin D Council, I retested at an optimal 87 ng/mL.  Now, that’s what I’m talking about!

So again, I ask you: are you one of the 41% of Americans living with vitamin D deficiency?

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4 Responses to “Who’s Watching Your Vitamin D Level?”

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Great post as always! Such an important topic.

I take my vitamin D’s. I was a little low at my last blood work. I have an upcoming appointment and will get it checked again.

Usually I do not read article on blogs, however I wish to say that this write-up very compelled me to take a look at and do it! Your writing taste has been surprised me. Thanks, quite nice post.

Janice- your doing a fantastic job advocating for yourself and researching about ALS. No one knows you better than yourself and it is important to stand your ground with physicians regarding concerns that you have. Healthcare is not an exact science and it is difficult to get an actual diagnosis, especially when so many other diseases have to be “ruled out” and many of them overlap with their symptoms. This blog is inspiring, thank you for sharing your journey.


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