Extreme sensitivity to vitamin D - need help!

Learner1

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I react badly to vitamin D as well. In my case, I end up with nasal congestion, my sinuses become blocked, and I tend to get a headache and feel dizzy. The symptoms typically last for a couple of days, but I have taken lower doses than you took
You aren't by chance allergic to wool? My friend is, and after she complained dreadfully about reactions to vitamin D, we researched it and found out that most of it comes from lanolin from sheep wool....
 
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Second star to the right ...
. My face has started to have numbness on and off.
How's your intake of magnesium etc? Especially calcium, which is essential for nerve transmission ....


That's a miserable side effect, by the way ..... I'm so sorry that you're experiencing that ....

Generally, facial numbness is associated more with low levels of Vit D than with high levels, but then, we're all so freakily divergent from whatever the currently accepted norm may be ....
I have been taking it for osteo issues because I practically live in a cave.
Again, right there with you, which is why I freaked so much when I became reactive to D ..... it's not like I'm getting it from anyplace else .....
Not quite like the hermits of Umbria, because I don't actually self-flagellate. Having ME/CFS is punishment enough.
Took the words right out of my mouth ...


And those Umbrian caves look great, much nicer than my own ....
 
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Another question I had is wouldn’t by symptoms be slightly improving by now? I feel like I’m headed in the wrong direction.
 
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Hi @Jackpharm .....

I can't speak directly to your situation, but the anecdotes I have heard regarding bad reactions to vitamin D report that the negative reaction can last a month or so. So you may just have to wait it out...
As @Pyrrhus noted, it can take a while for D to leave your system. I think its half life is 15 or 16 days, and you're about 21 days out, so you still have half of your last few doses in your system ....

Dont despair. Keep pushing magnesium, and perhaps calcium, A, etc....
 
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You aren't by chance allergic to wool? My friend is, and after she complained dreadfully about reactions to vitamin D, we researched it and found out that most of it comes from lanolin from sheep wool....
I just looked at my product and it does have lanolin in it? Could my allergic reaction be from the wool? I know when I wear wool shirts I tend to itch. If this is the culprit what should I do?
 

Learner1

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jaybee00

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If your are having numbness in your limbs you should see a neurologist and not seek medical advice on this forum.
 
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If your are having numbness in your limbs you should see a neurologist and not seek medical advice on this forum.
Had a full work up by a neurologist. And MRI of spine and brain negative. I’d find it very coincidental that all this literally started 3-4 days after starting the D3
 

gbells

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Help needed please. Started vitamin D3 5000IU on June 23. Started having weird tingling/numbness starting in arm and spread to my leg and face over the next 7-8 days followed by terrible vertigo on a daily basis. Realized it could be from the vitamin D, so I stopped it on 7/2. I realize now that vitamin d has an extremely long half life (16 days) and that I also should’ve been supplementing with magnesium. I started taking Mag-SR (84mg elemental Mg) twice a day about a week ago. I still have these symptoms daily. My vitamin D level is normal-42 (33 last year). my calcium-9.2 at the ER last week. I feel terrible right now and I have a 2 year old daughter and pregnant wife. Do I just wait this out until the vitamin D is out of my system? Double up on the magnesium? Avoid the sun? I’m literally grasping at straws right now. My only other health issue is that I have hypothyroidism and my last TSH level (last week)was 2.2. I am usually closer to 2. Any help is really appreciated
Hypervitaminosis D doesn't cause vertigo and numbness. However, too much can give you osteoporosis so be sure your doctor knows what supplements and vitamins you take. You are smart to think overdose since one 5000 iu pill is 1250% of the RDA and you are taking it 7 days per week (8,750% RDA per week). I was taking about 10,000 iu per day for about six months as part of a Gcmaf protocol and my doctor did a blood test and had me stop all vitamin D for a few months to get the level down. Vitamin D is fat soluble so it gets stored in body fat and takes a long time to come down. Hopefully you haven't done this too long and developed bone loss. You don't want to get osteoporosis.

Your nausea, vertigo and facial numbness symptoms are a good match for cervicocranial instability. Have you been screened for that? If you have it neurosurgical stabilization might really help your CFS symptoms.

I currently have lupus so I get low sun exposure and take one vit D dose of 2,000-4,000 IU one day per week per appetite. I like weekly dosing because it is an immunosuppressant steroid so that minimizes the suppressive effect which works against my apoptosis regimen and it's very convenient. At one pill of 2,000 iu per week that's 71% of my weekly rda but I also get vit D from fish and fortified almond milk so it's about right (2 pills is 142% of my RDA).

Best of luck.
 
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Update here. Tried a medrol dosepak (steroid taper) last week from my doc and still no improvement. Should I try maybe taking the magnesium glycinate more frequently throughout the day? I’m currently at 800mg Total /day in 2 separate 400mg doses.
 

Learner1

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Update here. Tried a medrol dosepak (steroid taper) last week from my doc and still no improvement. Should I try maybe taking the magnesium glycinate more frequently throughout the day? I’m currently at 800mg Total /day in 2 separate 400mg doses.
Steroids can suppress your immune system (which is why they can help in certain cases) and make you more prone to osteoporosis. Medrol is a strongee one.

Most people are inadequate in magnesium, so it's worth a try. If 800mg a day of mag glycinate isn't giving you diarrhea, you likely need it. I take 350mg mag malate first thing in the morning and 350mg mag glycinate before bed which helps sleep. Do research any brand you take. Many are contaminated with naturally occurring arsenic.

You might want to think about comprehensive nutrient testing which may give you more clues. A Genova Diagnostics NutrEval with Vitamin D along with a Doctor's Data urine essential minerals test might be useful.
However, too much can give you osteoporosis so be sure your doctor knows what supplements and vitamins you take. You are smart to think overdose since one 5000 iu pill is 1250% of the RDA and you are taking it 7 days per week (8,750% RDA per week). I was taking about 10,000 iu per day for about six months as part of a Gcmaf protocol and my doctor did a blood test and had me stop all vitamin D for a few months to get the level down. Vitamin D is fat soluble so it gets stored in body fat and takes a long time to come down. Hopefully you haven't done this too long and developed bone loss. You don't want to get osteoporosis.
Too little vitamin D and vitamin K will eventually give one osteoporosis. Though vitamin D hypervitaminosis is very real, most people are extremely short of it, and it's needed not only for bones but for proper immune function. (Low vitamin D gas been linked to worse cases of COViD...)

My mom's vitamin D level was 8ng/ml when she was tested after she broke her shoulder and had curved shin bones, and the Cleveland Clinic put her on 50,000 IU a week.

Turns out we have fairly common VDR SNPs making us need far more than the 800 IU recommendation. My vitamin D level dropped 20ng/ml in 2 months when I switched from 10,000 IU down to 6,000 IU daily.

General recommendations are that people need 4,000 IU to have a sufficient level. The Vitamin D Council is a good resource.
I currently have lupus so I get low sun exposure and take one vit D dose of 2,000-4,000 IU one day per week per appetite. I like weekly dosing because it is an immunosuppressant steroid so that minimizes the suppressive effect which works against my apoptosis regimen and it's very convenient. At one pill of 2,000 iu per week that's 71% of my weekly rda but I also get vit D from fish and fortified almond milk so it's about right (2 pills is 142% of my RDA)
Glad it's right for you, but this would be dangerous for many people around here. It's always best to test and make an individual system. My immune system isn't too spunky, but I have been improving and beat 7 chronic infections on 10,000 IU a day.

The RDA (now DV) is set to prevent osteoporosis which was emphatically wrong in my mom's case, and for many others.
 

Seadragon

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@Learner1 Is there a form of Vit D other than Cholocalciferol that is also available in small doses, say in liquid form with a dropper dispenser? I don't tolerate cholocalciferol (allergic to lanolin) and I can't find any brands these days that are from fish oil - I also think the latter could be rancid or/and contaminated anyway.

I would prefer to try very small doses (thinking about trying Vit D again now as I sometimes feel better when I can get a decent amount of warm sun on my skin but too much sun makes me worse - possibly because I overheat easily though)

Many brands seem to have gel capsules with really quite high doses of vit D in them (more than I'd like to start at) and you can't easily just take half or a quarter of a gel cap!
 

uglevod

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Vitamin D could make more Free Vitamin D available to the immune cells

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3976473/

-> incrased VDR activation -> antimicrobial peptides -> herx(inflammation) reactions.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2821804/

The biggest problem with Vit D comes when certain bugs/viruses are presented in the immune cells making VDR activation suppressed and thus effectively turning Vit D into pure anti inflammatory hormone, for example:

Intrinsic activation of the vitamin D antimicrobial pathway by M. leprae infection is inhibited by type I IFN
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6177120/
"Following infection, virulent mycobacteria persist and grow within the macrophage, suggesting that the intrinsic activation of an innate antimicrobial response is subverted by the intracellular pathogen"

"Upon infection of monocytes with M. leprae, there was no upregulation of CYP27B1 nor its enzymatic activity converting the inactive prohormone form of vitamin D (25-hydroxyvitamin D) to the bioactive form (1,25α-dihydroxyvitamin D)"
...
if the pathogen bearing MΦ, such as those found in L-lep lesions, were unable to convert 25D, it would not be surprising to see minimal therapeutic benefit following vitamin D supplementation

... but since you react to vit D, it seemed to be not your case
 
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@Jackpharm
I went thru several years of bad reactions to Vit D, stopping it, starting it again, stopping it. Finally stopped it entirely for about 2 years, and stabilized from a lot of things by finding my optimum dosing level of magnesium glycinate and pumping tht into my system every day to the tune of as much as 2000-plus mgs a day, along with Vit C.


When I started back on Vit D, I skipped the soft gels, which are loaded with free glutamic acid, which I also reacted to, and went with baby liquid drops, starting ridiculously low and very slowly moving up, holding where I was if I started to feel hinky.

It's taken almost 2 years, but I'm finally at a healthy replacement dose of about 15,000 iu a day, skipping a day now and then just for the hell of it.

I think @Pyrrhus is right .... you're just going to have to ride it out, but the magnesium might help. I'm pretty sure it helped me. I took small doses every 30-60 minutes until all my reactions were under control, and now take at much wider intervals. And still with the Vit C .....
Thinking about upping my magnesium. I’m at 800mg per day now and not feeling any better. Thought I read the max was 900mg per day somewhere. Is it safe to say as long as I’m not having any diarrhea that I’m ok with the increased dose? I’ll definitely titrate up slowly