2

votes

Why am I unable to tolerate supplemental vitamin D?

Answered on October 13, 2016
Created November 03, 2012 at 12:35 AM

I do not seem to be able to tolerate any amount of additional vitamin D anymore. It being October, I could sense that I was losing my verve, and decided to start taking it again -- I had last taken it in March. I have kept a meticulous symptom diary in the past, and I'd connected my vitamin D supplementation with a range of very scary symptoms, including

  • frequent urination
  • confusion, especially in the mornings
  • impaired memory and trouble with word-finding - this is the scariest one
  • dry "crunchy" skin, especially in the face
  • dry eyes
  • pain in the lumbar region
  • muscle stiffness in the neck and shoulders

The symptoms do have a lot in common with hypercalcemia, but every single time I've been tested while symptomatic, my serum calcium has been well within normal limits. I've had electrolytes done out the wazoo, and they've always been normal (oh, I did have one serum potassium which was borderline low).

Due to my past experience I decided to take things very slowly this time, and started with a modest 1000 IU/d, for seven days, before bumping it up to 2000 IU/d. After four days at 2000 IU/d, the above symptoms were returning, and I had to stop again. That was on October 20th. On October 26th I sent a blood spot test off to the NHS lab at Sandwell and West Birmingham hospitals because I didn't want to pester my doctor. Given how I was feeling, I thought for sure the level would come back somewhere well above 100 nmol/L (40 ng/mL).

I got the results today. Imagine my horror: it was 48.7 nmol/L (under 20 ng/mL)! In all the tests I've done - it must be half a dozen in the last three years now - it's never been that low.

I have to admit to being totally stumped. These symptoms I get when I supplement are real, and the mental effects are severe enough to make me really afraid to try this again. It took roughly as many days for my mental function to normalize as days I took the vitamin D (10). I need my mind to work!

I am fairly sure it is the vitamin D, because I have had similar symptoms after sun exposure.

At the same time, it's not like I am now symptom-free, either -- my joints are noisy as hell, for one thing -- and that level is low enough to concern me for all kinds of other good reasons.

I've considered the following possibilities:

  • I've got sarcoidosis that hasn't been detected. That seems mad, since I have no other symptoms of sarcoidosis, and you'd expect my labs to be totally out of whack.

  • I've got some other endocrine disturbance that hasn't been detected, but I've been to two endos in the last 18 months and the labs were all normal (apart from one vitamin D level which came back flagged -- at 66 ng/mL. Desirable, right? That's what everyone says. Well, I felt atrocious at the time, and my mental function was horrible, much worse than it is now.)

  • I've got an allergy to the supplement. It's D Drops, which is just MCT oil and cholecalciferol, and is supposed to be among the best tolerated. It certainly gets my levels up faster than anything else I've tried.

  • I'm not getting enough magnesium -- this is the argument Cannell makes when people complain of weird symptoms like this -- but I've tried magnesium supplements, and after a few days, I have other muscle problems -- stiffness, increased muscle tone, etc. I've been battling an iron deficiency, and magnesium can interfere with iron absorption, so it's possible those effects are due to that. But they haven't done much for these vitamin D effects.

  • The test result is inaccurate. Really, though? This is an accredited NHS lab that has been doing research in this area for decades. I've had levels as low as 52 nmol/L before.

  • These symptoms are the result of an adaptation to a low vitamin D store, and will go away with continued supplementation and getting the levels above 40 ng/mL. I would really like to believe this, but I've had my levels that high as recently as April, and felt worse then than I do now. It's possible that the symptoms are the result of a combination of other factors -- the iron deficiency was much worse in April -- but you can understand why I'd be nervous.

  • I'm just an unusual case, and my levels don't need to be above 30 ng/mL. Honestly, though... I don't think I'm that special.

It would be reasonable to think this is a sign of some other more serious problem, but I've been turned upside down by physicians and the only detectable problem has been iron deficiency with occasional anemia, and that's being treated (things have improved massively since then, I should add).

So, Paleohackers, enlighten me. Have you experienced reactions like this? Should I try again, and just persevere? Should I try larger weekly doses? A sunbed? Is there something else I should take with the D that would help? Is there something else I should have tested? (PTH has always been normal, by the way)

9b0310b623f8ed289c9571ab3a58a142

(384)

on November 04, 2012
at 07:08 PM

I wonder if it is true that it pulls all the Mg out of circulation and into bones/teeth. I began taking D again after reading about Weston Price's findings that D stops cavity formation, and the only way it could do that is by kickstarting the re-mineralization process.

76211ec5301087de2588cfe3d6bccba9

(1178)

on November 04, 2012
at 05:05 PM

I understand what you are saying because I deal with a similar problem--my symptoms cause me distress. but sometimes I wonder if I allow my distress to perpetuate my symptoms by allowing my stress response to run away unchecked.

121a16aded2bed8dca492d3c9662ef4c

(1327)

on November 04, 2012
at 03:11 PM

@kashperanto: yeah, you'll see I posted there last year (post by user "rhombus"). Nobody ever answered my post, which was disappointing, but that's the Internet for ya. Still, though these things people experience are real, there's no good explanation for them. It's likely the vitamin D, because I react the same way with normal sun exposure, but why? It doesn't make sense that one would respond this way to a dose of vitamin D that you get just from being outdoors in shorts on a sunny day. There has to be another factor...

121a16aded2bed8dca492d3c9662ef4c

(1327)

on November 04, 2012
at 02:43 PM

...or my system is very sensitive to calcium. Or I really do need to take a second look at more supplemental magnesium intake. Or or or...

121a16aded2bed8dca492d3c9662ef4c

(1327)

on November 04, 2012
at 02:42 PM

It's enough to make me wonder if the symptoms might just be caused by a declining PTH, since it's conceivable that PTH has functions other than Ca regulation. But I have no symptoms of hypothyroidism per se: for one thing, the calcium level has usually been mid-normal to high-normal, a sign that the vitamin D was doing its job very well. The lowered PTH is most likely to be a response to the increased serum calcium.

121a16aded2bed8dca492d3c9662ef4c

(1327)

on November 04, 2012
at 02:35 PM

My doc is good about this -- he always reqs a PTH and electrolytes when he checks the D. This last test result was a standalone test I ordered myself, but an all previous occasions they were both checked and well within normal limits (which always surprised me, because I was really symptomatic). In fact, the PTH was typically on the low end of normal and seemed to correlate inversely with the vitamin D and serum calcium level (what you'd expect, really).

9b0310b623f8ed289c9571ab3a58a142

(384)

on November 04, 2012
at 02:40 AM

The migraine forum I read is here: http://forums.healthcentral.com/discussion/migraine/forums/a/tpc/f/1781015/m/52610539

9b0310b623f8ed289c9571ab3a58a142

(384)

on November 04, 2012
at 02:35 AM

Scary indeed. There were several reports I read on that migraine forum about people going months on the supplement and suffering the entire time. This has about scared me enough to quit supplementing D for good until I figure out this reaction.

121a16aded2bed8dca492d3c9662ef4c

(1327)

on November 03, 2012
at 09:07 AM

@kashperanto: yeah, those are some of the symptoms I've had that I forgot to mention. A few nights I woke up with terrible night sweats, as though my body temperature were fluctuating, and I also had very achy joints. That you tolerated it in the summer but not now really makes me wonder if this isn't indeed a case of, "the levels are now very low and need to come up, way up" before things improve, a sort of "it gets worse before it gets better" proposition. Still... testing this, given the previous reaction, is a slightly scary proposition.

121a16aded2bed8dca492d3c9662ef4c

(1327)

on November 03, 2012
at 09:04 AM

It's the symptoms that drive me mad, not thinking about them. If I have impaired concentration, it means I cannot work, and that *is* worrisome.

121a16aded2bed8dca492d3c9662ef4c

(1327)

on November 03, 2012
at 09:02 AM

I did mention that I have had levels as high as 66 ng/mL before, so getting the levels up is not a problem. The issue is how I feel when I supplement and when my levels are high. I also don't have any evidence of an autoimmune disorder at all, and I hardly ever get sick. I get only these symptoms which are reminiscent of hypercalcemia, without ever having any laboratory evidence of hypercalcemia. The confusion is the worst.

9b0310b623f8ed289c9571ab3a58a142

(384)

on November 03, 2012
at 05:31 AM

Interesting, I just posted about a strange vitamin D reaction I've had recently. I have recently (this summer) taken 4-6000 IU/day doses with no negative effects, but this week I've begun to supplement again. The first time I took 6k at night and woke up with an intense fever and headache, accompanied by nausea and achy joints (especially the neck and back). Not all the same symptoms as you have listed, but close. These are some of the symptoms of a vitamin D overdose, but that doesn't make any sense. Maybe we don't know as much as we think about D?

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7 Answers

3
8d608156f7081e23aa0c51a8090a4695

on November 03, 2012
at 01:17 AM

This may be a vitamin D receptor gene issue - yup there are genes for that. Persons with autoimmune problems / chronic inflammation (like sarcoidosis) may have defects at these genes. This makes it harder vitamin D to enter cells and harder for the immune system to use vitamin D to defend itself. In fact one of the ways that bacteria, viruses, and parasites "unlock" and disable the immune system is to interfere with vitamin D receptors. If you already have some compromise there because of genetics, it makes you much more susceptible to this. You may find that no matter how much you supplement vitamin D, your levels don't rise as expected. I would see if you can get tested for vitamin D receptor gene status. This is a little bit unusual and the only resource I know of for it is Amy Yasko. Once you know that story, then perhaps you can be safely guided on how/if to supplement, or on other angles to help your immune system function better (like screening for chronic Lyme, parasite, amoeba or other subclinical infections)

121a16aded2bed8dca492d3c9662ef4c

(1327)

on November 03, 2012
at 09:02 AM

I did mention that I have had levels as high as 66 ng/mL before, so getting the levels up is not a problem. The issue is how I feel when I supplement and when my levels are high. I also don't have any evidence of an autoimmune disorder at all, and I hardly ever get sick. I get only these symptoms which are reminiscent of hypercalcemia, without ever having any laboratory evidence of hypercalcemia. The confusion is the worst.

1
886436139cec4c2fbf30d26a40a0fc06

(219)

on November 03, 2012
at 07:16 PM

Have you had calcium levels or PTH levels tested recently?

In a post that Emily Deans wrote this August, she describes hyperparathyroidism being unmasked by Vitamin D supplementation. In the U.S., calcium and PTH levels would often be diagnostic.

121a16aded2bed8dca492d3c9662ef4c

(1327)

on November 04, 2012
at 02:35 PM

My doc is good about this -- he always reqs a PTH and electrolytes when he checks the D. This last test result was a standalone test I ordered myself, but an all previous occasions they were both checked and well within normal limits (which always surprised me, because I was really symptomatic). In fact, the PTH was typically on the low end of normal and seemed to correlate inversely with the vitamin D and serum calcium level (what you'd expect, really).

121a16aded2bed8dca492d3c9662ef4c

(1327)

on November 04, 2012
at 02:42 PM

It's enough to make me wonder if the symptoms might just be caused by a declining PTH, since it's conceivable that PTH has functions other than Ca regulation. But I have no symptoms of hypothyroidism per se: for one thing, the calcium level has usually been mid-normal to high-normal, a sign that the vitamin D was doing its job very well. The lowered PTH is most likely to be a response to the increased serum calcium.

121a16aded2bed8dca492d3c9662ef4c

(1327)

on November 04, 2012
at 02:43 PM

...or my system is very sensitive to calcium. Or I really do need to take a second look at more supplemental magnesium intake. Or or or...

0
8dd8fe1966c3225336e910ed6016a574

(0)

on October 13, 2016
at 01:22 AM

You asked this a long time ago, but I had a similar problem to you recently - all kinds of nasty effects from taking oral cholecalciferol supplements, no matter which supplement and no matter what the dose. Effects of cholecalciferol supplements were headache, insomnia, greasy skin, tiredness, inability to concentrate, and a general wretched fuggy feeling. My vitamin D level got so low and my muscle weakness so bad that I decided to have a vitamin D injection, which terrified me given the symptoms caused by the oral supplements. I ended up having 600,000IU ergocalciferol in my butt (two 300,000IU injections a week apart) and then several alfacalcidol IV injections over a few weeks. I had NO adverse reactions whatsoever! I was stunned. I do think I have an undiagnosed gut problem that was causing the reaction when I took oral vitamin D. Often when I eat I feel very tired and fuggy, and I also get candida infections frequently. Just thought I'd tell you about my experiences. I paid privately for my vitamin injections. The NHS were not very helpful, sadly.

0
39f6d687d79f4d323ae846c56392561e

on February 19, 2015
at 10:59 AM

 You have probably resolved your problem by now, but it sounded like it was a kidney problem caused by the vit d which affected the calcium levels. for kidneys, urine tests are used to measure calcium, and for parathyroid, blood tests are used to measure calcium. I can't take a lot of supplements without side effects, but i can take them in their whole form (salmon vs fish oil, yogurt vs lysine) there is a synergystic effect when taken whole. Fish contains the highest source of vit d, but that wouldn't have helped if vit d was the problem, and if the sun bothered you too. on web md in the vitamin and supplement section, if you type in vit d and click side effects it lists all the possible conditions. 

0
886436139cec4c2fbf30d26a40a0fc06

(219)

on November 03, 2012
at 07:18 PM

Off topic -- you can request a blood lab through the NHS? Here in the U.S., I could only get that through my doctor or through the internet (if I found a lab willing to do the draw and mail it.) Wish I could order up tests through my MD more easily. .

0
Cb9a270955e2c277a02c4a4b5dad10b5

(10989)

on November 03, 2012
at 03:22 AM

Begin Edit After getting a down vote I rrealize that I should have preluded everything below with: "In your first sentence you say that your body doesn't seem to tolerate any supplemental amount of vitamin d, if this is true then there are other routes you can take that will encourage your body to conserve the (seemingly inadequate) vitamin D stores already in circulation. I don't pretend that anything below will necessarily help but I encourage you to look into it until you find a natural source that agrees with your body. End Edit

Well I'm not entirely sure what this crowd thinks about Jack Kruse, but he is definitely Paleo, so I'll go ahead and post something from his blog on brain-gut 12:

"Moreover, the more oxidized the cell becomes, the more Vitamin D has to be used to offset this increased oxidation as a buffer to keep the immune system activated to work. Our immune system protects us from cancers. When this process goes on chronically, Vitamin D levels eventually falls with oxidation too. This is why low Vitamin D levels are associated with higher cancer rates, like breast cancer."

Basically he's saying that as you oxidize your body your body then uses your vitamin d to deal with the oxidation. Where he goes with this is that you can do certain things to reduce your body, which include eating paleo (though he includes more seafood) and taking ice baths. Theoretically I'd assume this would mean that your body would be able to save more of the vitamin d and stop having to use it to deal with oxidative stress. Here's the link to that quote: http://jackkruse.com/brain-gut-12-dare-to-disagree/

-1
76211ec5301087de2588cfe3d6bccba9

(1178)

on November 03, 2012
at 05:35 AM

Sure, try a different Vit D delivery method like a sunbed. I also suggest trying to relax and not drive yourself mad over symptoms. The stress you generate wuth fretting will only create more health problems.

121a16aded2bed8dca492d3c9662ef4c

(1327)

on November 03, 2012
at 09:04 AM

It's the symptoms that drive me mad, not thinking about them. If I have impaired concentration, it means I cannot work, and that *is* worrisome.

76211ec5301087de2588cfe3d6bccba9

(1178)

on November 04, 2012
at 05:05 PM

I understand what you are saying because I deal with a similar problem--my symptoms cause me distress. but sometimes I wonder if I allow my distress to perpetuate my symptoms by allowing my stress response to run away unchecked.

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