Second-guessing the consensus on vitamin D

penny

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My ESR was 2 (0-15) back when I was sick having quite a bit of inflammation, my D25 has always been low(ish). So not sure how reliable ESR as an inflammation marker is ;) But the docs only care about high values anyways. Also we used to be out in the fields every day getting plenty of sunshine, likely getting multiples of Vit. D producing sunlight compared to today - so while we definitely should not oversupplement, be always critical of hype and get tested if in doubt, Vitamin D avoidance just sounds silly to me, esp. since I have an office job (just aiming for a stable value of 50 for now).
Hmmm, I'm torn. I do strongly agree with your statement to be "critical of hype" but I think the hype around vitamin D is that everyone is deficient, everyone needs large doses, and it can do no harm. That's the hype I'm wary of.

But I clearly don't think vitamin D avoidance is 'silly', maybe for some, even many folks, but not for everyone. My supplemental vitamin D intake has a huge impact on my health, so for me avoiding it simply = less illness, less pain, and better functioning. I can see this within days of a relatively small 'dose' (i.e. 2 servings of enriched cornflakes, approximately 120iu's, no dairy, caused an increase in muscle pain and cramping the second day after). A regular daily dose of 25iu's D and 100mg calcium coincided with a severe 6 week relapse. Why this is the case I don't know, maybe it's the theory these folks propose or maybe I have calcium regulation issues and D just happens to exacerbate that. I'd love to know why, but I don't need to know why to know that I feel and function much better when my 'oral' vitamin D intake is very low. I don't, for the record, avoid sunshine, but would say I probably only get a moderate amount (good location for sun, no day to day sunscreen, but office job with exposure normally limited to walking between buildings - not always short walks though).

But while I'm eager to share my experience, since it does deviate from the hype and I think it's important to be open about experiences that are contrary to conventional wisdom, I've never proposed this for everyone or even anyone else. While I seriously doubt I am such a special snowflake that there's no one else out there who has the same experience as me, I would never tell anyone else what their experience is, or what they should do with their bodies.

And that's exactly why the idea of increasing food enrichment dramatically on what seems dubious scientific basis scares me, it's attempting to force this on everyone whether they know or want it or not. You want to take huge amounts of vitamin D, fine, cool, I'd even be okay with governmental subsidies of such things to make it more affordable for those who want it, but further intertwining it in the food supply? That's a different proposition.
 

Ema

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A great deal has happened since 1997. We learned that hormone replacement therapy (HRT) can cause disease (which led to thousands of premature deaths) even while early observational studies seemed to quite erroneously suggest the opposite.[3]
Actually, the WHI study was determined to be pretty badly flawed and it is not accepted by those who have actually looked at the issue that the first conclusions regarding the dangers of BHRT were erroneous.

Many women have suffered because of the WHI studies and no longer feeling comfortable with BHRT. The myths regarding hormone replacement in women (specifically) estrogen persist among the medical professionals that never got beyond the headlines and continue to do a dis-service to women around the world.

Ema
 

Ema

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I got really interested in this topic when I was going through my labs and noticed that I had (mistakenly) ordered the 1,25 D lab once last year. The result was over the range high but I had no idea what it meant at the time. My 25-OH D has always been low in the 30s since I've been having it measured.

I came across the information (a lot of it by Proal) on the Marshall Protocol website and became curious. I re-tested my 1,25 D and almost a year later it was still over the top high. I had been taking 10,000IU of Vitamin D a day to keep my levels in the 60-80 range. I dropped the Vitamin D to see what would happen. I tested 25-OH and 1,25 D again about 3 months later and the 1,25 D was still elevated while the 25-OH had fallen significantly (back into the 30s).

In the meanwhile, I started reading the test protocols on the MP site which indicate that it is crucial that the Vit D samples be frozen. So I had my levels re-tested again a few weeks later, frozen, and lo and behold...my 1,25 D was 37. Perfectly normal and nearly at the mean level...

I asked a friend of mine to re-test frozen as well and her formerly elevated 1,25 results came back normal as well. It's hard for me to call it a coincidence but it very well could be.

So are we all REALLY having high 1,25D levels or is it just that the lab is mishandling our specimens? Is freezing really that crucial? It must be if it can change the results that drastically in a matter of weeks...How many people who have tested have specified frozen samples?

These are all questions I need to have answered before I can buy into either side. In the meanwhile, I've gone back to supplementing Vitamin D as I never noticed anything one way or another from it symptom-wise but at a lower dose of 2000IU/day. My aim is to keep my level in the 50-60 range for the time being.

Ema
 

Little Bluestem

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I can understand the 1,25 D breaking down in an unfrozen sample, but what would make more of it? I suppose 25 OH D could convert, but I thought you were low in it.
 

Ema

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I can understand the 1,25 D breaking down in an unfrozen sample, but what would make more of it? I suppose 25 OH D could convert, but I thought you were low in it.
I wish I knew the answer.

My 25-OH was in the 30s (they were within 5 points of the same value) for both the second and third testing. The second 1,25 non-frozen was elevated. The third frozen 1,25 was not.

The same went for my friend who lives on the other side of the country. Both Labcorp but obviously different sites.

If the test wasn't 80 bucks, I'd do it again just for curiosity's sake. I think my friend may do it again unfrozen and see if it reports high again.

I just don't trust the testing at this point. I think if it can vary by 60 points within a few weeks just by whether or not it is frozen or not, then that needs to be part of the protocol set out by Labcorp. I was kind of worried I had something serious like sarcoidosis or lymphoma when I first started researching it. I would also kind of like my money back for the first tests if they aren't accurate!

Ema
 

taniaaust1

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What does "ESR" stand for? I am currently taking vitamin D because my level was low when last tested. I am thinking an inflammation test might be in order.
ESR stands for Erythrocyte sedimentation rate.

"The ESR is an easy, inexpensive, non-specific test that has been used for many years to help diagnose conditions associated with acute and chronic (that is, short or long duration) inflammation, including infections, cancers and autoimmune diseases. ESR is said to be non-specific because increases do not tell the doctor exactly where the inflammation is in your body or what is causing it" http://www.labtestsonline.org.au/understanding/analytes/esr/tab/test

Its sometimes used also in inflammatory diseases to check how the meds are working against the inflammation.

ME/CFS is tricky as some seem to have very low ESR and others like myself are a bit towards the high side. (at times Ive been on the borderline of normal and high.. each year mine used to steadily go up one number more.. it did that for 7 years with a consistant raise up more (it was predictable what it was going to be the year after it was raising so consistantly.. so it went a mid range when I first started having it tested to almost abnormal.- (right on border). Then my D improved itself and the ESR fell back.
 

Symptomatic

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I can understand the 1,25 D breaking down in an unfrozen sample
I agree with this...and all the info on the MP and CIR sites suggest that mishandling results in a FALSELY LOW number, not a falsely high number. I have only had one low 1,25D number, and I didn't believe it at all since my calcium was high at the time. My calcium and 1,25D seem to track together; since we believe the 1,25D is causing my hypercalcemia, this makes sense. NOTE: not everyone with high 1,25D manifests with hypercalcemia, I'm one of the unlucky ones.
 

Symptomatic

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Also note that the MP and CIR folks don't recommend frequent testing of 1,25D as it can fluctuate during treatment. The only reason I'm having mine measured frequently is because of the hypercalcemia, since the numbers track together for me.


From: http://mpkb.org/home/tests/dtesting
Special handling for the 1,25-D test

The 1,25-D assay is very sensitive and if it is not sent to the performing lab frozen, it will not be accurate. The sample must frozen to prevent dedegration leading to an inaccurate, lower result. Patients may want to verify that the technician at the drawing (satellite) lab plans to freeze the sample for shipping (see sample Doctor's instructions below). There are two Quest codes for 1,25-D and the order must specify Test Code #4729X to be frozen.



From: http://mpkb.org/home/tests

Vitamin D metabolism
Short of trying the Marshall Protocol itself (i.e. a therapeutic probe), the most valid way to determine if the MP is applicable to a patient is by measuring serum levels of two key vitamin D metabolites: 25-D and 1,25-D. 25-D is a measure of innate immune function with higher levels suggesting active immunosuppression. 1,25-D is a measure of inflammation.
Contextual interpretation of a patient's 25-D and 1,25-D results are available using the vitamin D metabolite calculator. When testing the vitamin D metabolites, all relevant instructions, including the freezing of samples, should be closely followed.
  • Test 25-D before starting the MP and intermittently thereafter – Patients should ask their physicians to order a baseline 25-D test prior to beginning olmesartan. Marshall Protocol patients whose 25-D is above 20 ng/ml should continue to be tested every three months. This allows the doctor and the patient to anticipate a possible increase in immunopathology, which corresponds to a 25-D level of 20 ng/ml or below. Intermittent testing (once every six months or longer) can continue thereafter to verify a patient is continuing to successfully avoid food containing vitamin D.
  • Test 1,25-D only before beginning the MP – Because olmesartan activates the nuclear receptor which limits concentrations of 1,25-D, the patient's level of 1,25-D after beginning the MP is not relevant. The 1,25-D test can sometimes be rather expensive.
It is also possible to test 25-D at home with a home test kit.
 

Symptomatic

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My personal situation:

1,25D 140 pg/mL before starting Benicar (calcium high)
Then 67.4 (calcium still high)
Then 47.2 (calcium normal)

I believe all those numbers, as my calcium was going down concurrently. So the number can drop quite rapidly.

We added other meds
Then up to 98.7 (calcium still normal, but I think this is where I took a U-turn)
Then 78.4 (calcium high here)
Then 29.7 (I don't believe this number - believe sample was mishandled, and my calcium was high)
Last week 91.6 (calcium still high)

We will either start removing meds one by one, or take them all out (except the Benicar) and start over.
 

Symptomatic

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Something else to consider is that Marhsall believes that not everyone who is ill will have a high level of 1,25D. If you do, it's significant, but if you don't, it doesn't rule out having a problem.

From: http://mpkb.org/home/starting/therapeutic_probe

The vitamin D metabolites may offer one indication of disease. Patients sick with Th1 disease often have a low 25-D coupled with a high 1,25-D. However, this is not always the case. A variety of factors could skew these results. A patient could be consuming high levels of 25-D or the D metabolites test could be mishandled, which is more common than one might initially suppose.
 

Ema

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I agree with this...and all the info on the MP and CIR sites suggest that mishandling results in a FALSELY LOW number, not a falsely high number.
I agree that this is what should happen with it too however it simply wasn't my experience over the course of three separate testings and I personally know of another person with the exact same experience.

I would have no trouble believing in the theory behind VDR issues causing illness. This has already been well shown in diseases like HIV/AIDS. But until someone can show that the testing is at least somewhat accurate, I cannot trust it. And without a reproducible, trustable test, there is NO WAY that I am trying something like Benicar as a probe. I am very willing to be my own science experiment for the most part but the risks to my low orthostatic blood pressure are simply too great (and yes, I know that the MP says that a diastolic BP of as low as 45 is OK but that is also not my experience).

My advice would be to test your 1-25D at least twice, once frozen and once non-frozen before embarking on this protocol and make sure the results make sense to you. If they do not, I would not trust the testing.

Ema
 

penny

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This is all very interesting, though I think over my head! I've not actually had my 1,25-D tested, and my 25-D only tested once a few years ago, so all my experience is based on trial and error on supplements/dietary tweaks. I still think the possible mechanisms are interesting to read about but I don't understand much of the technical aspects.

It does seem notable that there is so much disagreement over all the aspects of measuring D; what the true reference range for 25-D should be, whether it's 25-D or 1,25-D that is important, and even how test samples should be handled for accurate reads. Like Ema, I think I'd be wary of trusting the testing alone, though I think my distrust goes beyond just the 1,25-D test to the whole D gamut. The idea of taking large doses of hormones based solely on a a blood test whose reference range could be 20-30 points off (depending on who you talk to) is not appealing. But then I'm a born skeptic!

[And just to avoid confusion, I don't follow the MP. I avoid supplemental D because I realized it was making me sicker - nothing to do with anyone else's theories.]

Symptomatic You said you have high calcium levels, have you talked about these in detail on the board before? I'm curious as my calcium levels fluctuate (more than I believe they should) and are often on the high end of normal. But my PTH seemed to be okay (low when my calcium was high), so that seemed a dead end. I don't want to drag the conversation off topic but am curious about your experience.
 

Little Bluestem

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The idea of taking large doses of hormones based solely on a a blood test whose reference range could be 20-30 points off (depending on who you talk to) is not appealing.
I agree, but the idea of remaining deficient (if I really am deficient) in a substance that is important to creating ATP, preventing cancer and flu, and I don't know what all else is not appealing either. I am in a bit of a quandary. For now I will continue to take the vitamin D, which is not a terribly high dose, that my physician recommended.
 

Symptomatic

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I can only speak as a person with hypercalcemia. Since hyperparathyroidism was ruled out for me, the 1,25D has been deemed to be causing it, and my lab results bear that out.

When my 1,25D is down, my calcium becomes normal and my PTH moves from low-normal into normal ranges.

Benicar was directly responsible for a quick drop of my 1,25D, and normalization of calcium and PTH. My 25D remains low as one would expect, via the negative feedback loop from having high 1,25D (body says no, we don't need anymore of that).

I am not following MP strictly (e.g. I am taking non-MP meds such as Malarone, LDN, KMAF - stopped curcumin in July since that is supposed to act at VDR), and believe one or more of these is interfering with Benicar's action. I am working with my doctor to figure out what that is, and to remove it.

One size doesn't fit all - this is what's working for me in my situation. YMMV.

However, regardless of what you may or may not believe about 1,25D and its importance (or lack thereof), there is no evidence that suggests mishandling a 1,25D sample will cause the levels to increase. If info is found to the contrary I'd love to see it.
 

Symptomatic

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I agree that this is what should happen with it too however it simply wasn't my experience over the course of three separate testings and I personally know of another person with the exact same experience.

My advice would be to test your 1-25D at least twice, once frozen and once non-frozen before embarking on this protocol and make sure the results make sense to you. If they do not, I would not trust the testing.
You might also consider having them draw two vials at once, and having them freeze one and not the other, but test both at the same time on a sample drawn at the same time. That might be the best way to rule in/out any issues with handling. Comparing values handled differently but taken on different days may not give you the most accurate view of what's going on since your values could be fluctuating and the differences you are seeing could be real and not attributed to sample handling.
 

penny

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I agree, but the idea of remaining deficient (if I really am deficient) in a substance that is important to creating ATP, preventing cancer and flu, and I don't know what all else is not appealing either. I am in a bit of a quandary. For now I will continue to take the vitamin D, which is not a terribly high dose, that my physician recommended.
And that totally makes sense. If I was in a similar situation I'd probably do the exact same thing!
 
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Hmmm, I'm torn. I do strongly agree with your statement to be "critical of hype" but I think the hype around vitamin D is that everyone is deficient, everyone needs large doses, and it can do no harm. That's the hype I'm wary of.

But I clearly don't think vitamin D avoidance is 'silly', maybe for some, even many folks, but not for everyone. My supplemental vitamin D intake has a huge impact on my health, so for me avoiding it simply = less illness, less pain, and better functioning. I can see this within days of a relatively small 'dose' (i.e. 2 servings of enriched cornflakes, approximately 120iu's, no dairy, caused an increase in muscle pain and cramping the second day after). A regular daily dose of 25iu's D and 100mg calcium coincided with a severe 6 week relapse. Why this is the case I don't know, maybe it's the theory these folks propose or maybe I have calcium regulation issues and D just happens to exacerbate that. I'd love to know why, but I don't need to know why to know that I feel and function much better when my 'oral' vitamin D intake is very low. I don't, for the record, avoid sunshine, but would say I probably only get a moderate amount (good location for sun, no day to day sunscreen, but office job with exposure normally limited to walking between buildings - not always short walks though).

But while I'm eager to share my experience, since it does deviate from the hype and I think it's important to be open about experiences that are contrary to conventional wisdom, I've never proposed this for everyone or even anyone else. While I seriously doubt I am such a special snowflake that there's no one else out there who has the same experience as me, I would never tell anyone else what their experience is, or what they should do with their bodies.

And that's exactly why the idea of increasing food enrichment dramatically on what seems dubious scientific basis scares me, it's attempting to force this on everyone whether they know or want it or not. You want to take huge amounts of vitamin D, fine, cool, I'd even be okay with governmental subsidies of such things to make it more affordable for those who want it, but further intertwining it in the food supply? That's a different proposition.
Sorry, I was referring to wearing shades and avoiding sun and fresh air and such, not talking about supplementation. If you can't "stomach" it, it's probably best to not do it and find out why or pursue other avenues. Not advocating everybody HAS to supplement. I also agree that governmental supplementation via food is not the right way and potentially dangerous.
 

Symptomatic

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Hi Sherrie,

Thanks for the thought. Finding the parathyroid.com website in May 2011 is what got me started down the path. NOTE: although I don't think highly of the clinic any longer for reasons outlined below, they have some excellent information on their website.

I'd been feeling badly for years, but was basically ignored by my GP.

She kept going on about my "low vitamin D" (she meant 25D), but never mentioned my high calcium. I took 5000 IU/day of Vitamin D during May 2011. I kept Googling though, and stumbled upon Norman's website. Looked back over 12 years of my data, and lo and behold I discovered my calcium had been high that whole time. I was absolutely convinced I had a parathyroid adenoma. GP said, "if you do, it's probably a small one and you don't need to do anything about it" (really????). I stopped taking Vitamin D that day (Memorial Day weekend 2011).

I corresponded with the Norman clinic, who suggested I get tested once a week for three weeks, which I did, and shared the data with them. I had expressed concern from the get-go that my PTH was low-normal (below even the "white area under Confusion Area A" on their graph), but they still suggested I move forward with the consultation. I paid them for said consultation, and they told me they couldn't be 100% sure, but didn't think I had a parathyroid adenoma, and they specifically told me that my PTH wasn't high enough, in spite of what they say on their website: that they operate based on high calcium "regardless of the PTH level". I have e-mails from Norman himself.

I subsequently had both a sestamibi scan and a parathyroid ultrasound at a very experienced lab in NYC who also didn't think I had a parathyroid adenoma (they located two of my parathyroids and neither were enlarged).

After discovering I had high 1,25D (thanks to an on-the-ball local endocrinologist), a doctor on one of the parathyroid support sites said that I needed to get the 1,25D down and see if I still had high calcium. I didn't. When my 1,25D is normal, my calcium is normal and my PTH is normal = no parathyroid adenoma.

I had actually been hoping it was primary hyperparathyroidism and had every intention of heading to Tampa for surgery(which is why I invested the money for the consultation). After the insanity of their correspondence with me, I'm relieved not to have gone there.

The road I am on instead is kind of a crazy one...but as angry as I was with the Norman clinic (I felt they intentionally and deliberately took my money, knowing full well they weren't going to operate), I think they were correct and I do not in fact have a parathyroid adenoma.

So just trying to keep the 1,25D down and the calcium under control., and work on the compromised immune system. Fun, fun, fun.

Sorry for the super long and whining post.