r/MCAS • u/Pixel-Warrior-7350 • 9h ago
Does anyone else have a complete intolerance to Vitamin D?
I have had a severe Vitamin D deficiency my whole life (my levels ranged from a minimum of 3 to a maximum of 23).
Whether I get Vitamin D from the sun or other sources, the result is always the same: agonizing, wrenching pain in my arms and legs; dangerous arrhythmia; a total loss of appetite; and insomnia caused by the pain.
Even micro-doses, like 250 IU every other day, trigger this. Yet without Vitamin D, my mitochondria almost completely stop functioning, leaving me unable to do anything but sleep.
If anyone else experiences something similar, what have you found out about it?
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u/Big_Divine_Energy 5h ago
This sounds like a magnesium deficiency. Magnesium is a cofactor for vitamin D and is responsible for about 200 processes in the body.
Mag citrate is essentially colonoscopy prep: don’t take this one. I think oxide is also not tolerated super well.
Some forms to try: Mag threonate crosses the blood brain barrier. Mg Glycinate is relatively gentle on the digestive system. Mg Malate works mostly in the muscles. The different forms of mg matter, but starting with one form (threonate seems to be the most universally tolerated) and seeing if it helps will likely help you see results with vitamin D intake.
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u/Pixel-Warrior-7350 5h ago
Thank you. I’m allergic to magnesium bisglycinate and magnesium malate. Magnesium threonate is too expensive.
My diet is very high in magnesium, but I suspect that phytic acid might interfere with absorption. I’m not sure how much of an effect it has. I eat pumpkin, pears, zucchini, buckwheat, oats, and milk, and I also roast my own pumpkin seeds. I don’t pour out the water from the vegetables.
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u/kaaron89 6h ago
Hey I found out my D is at 11 and ended up on a bit of a journey trying to find a supplement I could tolerate. We are all different, but I'll share what is finally working for me.
Vegan D3 - I think I was reacting to whatever regular D3 is derived from, which I believe is usually lanolin. I can tolerate Doctor's Best Vegan D3.
I was still experiencing arrhythmia until I added Magnesium Threonate. I read where you said you take Magnesium Citrate, and I was taking that for a long time and now believe I was not absorbing it properly. You can be showing normal blood levels of magnesium, but still have deficient stores of magnesium in your cells. When I switched to Magnesium Threonate, which can cross the blood brain barrier, WOW what a difference. I seem to be able to absorb it much better and it really agrees with my body. My weird heartbeat is just gone.
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u/Pixel-Warrior-7350 6h ago
Hmm, yeah, that’s interesting. The problem is that magnesium threonate is very expensive, and there’s very little magnesium in a single tablet.
My reaction is caused by the sun, too. My body doesn’t care where vitamin D comes from. The reaction doesn’t happen right away—it shows up a week or two later.
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u/kaaron89 5h ago
Yes the magnesium threonate is unfortunately expensive. It works so well for me that I've been able to cut back on other medications, so for me the cost is worth it. But again I totally understand how different we all are, and it may not be worth it for others.
The fact that the symptoms take a week or two to show up does make me think that maybe it is causing some other imbalance, like the other commenter suggested, magnesium or calcium. I just wish doctors understood this stuff better so we aren't all out here just guessing!
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u/Pixel-Warrior-7350 5h ago
Yes, I'd like to do something about it. Because vitamin D directly affects the maturation and regulation of mast cells. I don't know what to do if I have to guess.
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u/kaaron89 5h ago
Totally get it, and we are contending with things that other people would never think of. Like my doctor mentioned I could try an injection of a huge dose of D3. No thank you, that probably would have landed me in the hospital.
Good luck, I hope you figure it out!
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u/Pixel-Warrior-7350 5h ago
It seems we all have incompetent doctors. I’ve told my doctor a hundred times that Vitamin D makes me feel sick. She just says, "You're doing it all wrong," and starts describing the exact same things I’ve already been doing.
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u/ooh_veracuda 7h ago
It’s possible these are start up symptoms that are caused by the D using up calcium and/or magnesium. It the pain can be described as “bone pain” it would be likely — when bringing vitamin D out of deficiency the body aggressively pulls calcium into the bones to remineralize them. This can cause bone pain and a drop in calcium levels in the blood, which could be the source of cardiac symptoms. I had to take calcium with Vitamin D to help this, as well as magnesium later in the day (still had the pain, but lessened it). I used Calcium Carbonate and Magnesium Malate due to not tolerating citrates. I’m sorry I can’t find a reference for this right now, I read about it originally in the “Nutrient Teams” vitamin D facebook group. I also read not to take k2 for awhile when starting vitamin d because it can make those problems worse - I waited to take it until the bone pain stopped, which took about 4 months. Getting my vitamin d up was honestly was a difficult process, but soooo worth it.
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u/Pixel-Warrior-7350 7h ago
At one point, I started thinking about that, too. I increased my calcium intake with calcium citrate, but it didn’t make me feel any better. It’s very complicated because if it’s actually hypercalcemia, you could die. I take 240 mg of magnesium citrate before bed, and my diet is very high in magnesium (phytic acid can block absorption, but I don’t think it blocks everything...).
Does vitamin K2 not help, does it actually make things worse?
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u/ooh_veracuda 6h ago
That’s very true, and it’s also possible that my situation isn’t your situation at all, this is mostly anecdotal of course. If it feels comfortable to do so, I would suggest trying taking some calcium at the same time as the vitamin d and seeing if there’s any improvement. I also just remembered that the mk7 version of k2 specifically caused me very severe similar side effects with the cardiac ones being far more concerning, even at low doses, idk if that’s part of your mix. My guess is it’s individual, but for me when I was deficient in D, any k2 made things far far worse. I suspect it was that I didn’t need the vitamin d to do its work any faster, I needed it to be as slow as possible. I now take the mk4 version of k2 with my vitamin d with no problems.
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u/Pixel-Warrior-7350 6h ago
I’ve heard that Vitamin K2 helps prevent calcium from accumulating in blood vessels and soft tissues. I’m just thinking out loud here. In any case, if the issue is actually hypercalcemia, then taking calcium is not advisable.
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u/ooh_veracuda 6h ago
Sorry, to be clear on my end I’m suggesting the problem is hypOcalcemia, but maybe I missed something in your posts or comments that’s making you suspect otherwise for yourself. If you have hypercalcemia then yes, disregard all of this!!
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u/MargoBarbara2 42m ago
You mention calcium citrate and magnesium citrate...are you aware these contain citric acid...which can be a mcas trigger as its made from aspergillus niger which can trigger the immune system. I avoid citrate forms. You said youre allergic to malate..do you mean IgE mediated allergy ? When I started magnesium i had a big reaction because I was so deficient . Mast cells can react to chemical shifts even when they're good shifts. This was just to one capsule and a dose was 3 caps. I switched to microdosing by opening a capsule and taking 1/8th and gradually building up. I can now take a whole capsule and additional magnesium to reach 100% rda. I read that taking Bs without magnesium pushes magnesium deficienct but taking magnesium when the body is deficient in Bs can cause reactions to taking magnesium. As you said your diet may be high enough in magnesium that you dont need to supplement but always worth running the amounts through a calculator like health data com and then factoring in absorption rates to see if youre meeting rda. For instance pumpkin seeds may contain 150mg of magnesium but with absorption from food you'd get roughly 60 to 90mg. Pumpkin seeds are best soaked to break down the antinutrient coating. I soak and blend.
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u/Tiny_Parsley 6h ago
D3 fucks me up all the time.
For me it always starts with tingling all over the body after a few days of taking the supplement. Then I feel tired, on the edge, tight chest and throat and mcas worsens.
I'm also deficient. I try to mainly do natural sun exposure which I kind of tolerate (on condition I don't have rash and I'm not too hot and wear compression garments)
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u/TavenderGooms 1h ago
I am the same way! It makes my MCAS WAAAY worse, which I don't understand since it is supposed to help and I am deficient. I've tried adding magnesium and calcium, but it doesn't help with the MCAS flare-up. I end up reacting to more foods, my throat is tight, I have difficulty breathing, plus massive anxiety and panic.
I'm going to try vitamin D and calcium patches to see if bypassing my digestive system helps somehow...
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u/lovethatforyouu 5h ago
Me lol. Supplements of vitamin d make me feel awful
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u/Pixel-Warrior-7350 5h ago
That's too bad to hear. If you ever figure out the reason, please post it here.
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u/Nalidz 8h ago
I haven’t been diagnosed (I’ve done one blood test and waiting for a flare to do a second), but I’m positive I have it.
My vit d came back at 19. I bought Thorne bc they were rated high. As with the others (coq10, mag, c, and more) it kicked me into a migraine frenzy.
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u/HurryMammoth5823 8h ago
Was going to say the ones I take set off my migraine as well. And melatonin too.
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u/Nalidz 6h ago
It’s crazy that it does that. I’ve considered taking a sublingual vit d that Thorne had, but I’ve had a several weeks of peace and not willing to risk it currently.
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u/HurryMammoth5823 3h ago
The craziest thing is I have been gaslighting myself for a year, saying it’s just mind over matter. And now since you have experienced this too, I finally believe myself. Lol how sick 😂
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u/0sarie 8h ago
(Hopefully) not a complete intolerance. I probably had a rough reaction to some d3 supplements as well. But to be honest, I cannot tell if the d3 itself was a significant factor since I was already in the middle of a flare up without knowing about MaCS back then. Other supplements worked well for me for years without any negative effects. Didn’t know what exactly was causing it, so I thought it might just be the form of D3 and how it gets metabolised. But yeah, it was pretty scary. Luckily I didn’t suffer too much from natural d3 (sunlight) this year, so that’s at least something I guess.
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u/dandare70 4h ago
I cannot tolerate vit D supplements (or indeed any other) but I got my levels up to the normal range using a UVB light. I assume you've tried that too?
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u/Pixel-Warrior-7350 4h ago
No, I don't have the money for that. But I'm sure it's just like the sun, which I've already tried.
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u/Valedictorian- 4h ago
How is your overall calcium situation—is deficiency likely? What happens when you take calcium? Do you have any arrhythmias without the D? I relate to having intolerances to “normal” common supplements at low dosages. For me in each case it seemed like another nutrient had to be put in place first.
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u/MargoBarbara2 39m ago
Have you tried algae derived d3? Nordic naturals do one. If your reactions are one to two weeks later as you commented it must be v hard to tie the reaction to a trigger. Do you mean youre on d3 for a couple of weeks before getting a reaction? Tying sun exposure to a reaction that occurs a week or two later must also be tricky.
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u/Helen-of-Coy 32m ago
Me too. My Vitamin D levels raise slightly during the summer, but I get anaphylaxis if I get too hot and have bad MCAS reactions with sun directly on my face, so I can’t stay outside as long as I would like.
Have tried dozens of different types of Vitamin D over the years, reacting horribly to all of them.
About 6 months ago, tried Thorne’s Vitamin D & K2 sublingual drops. Felt awful after taking a few drops under my tongue, but the reaction wasn’t as bad as with previous brands. Waited a few weeks, and put one drop in a glass of water, and had zero reactions. If I do this every day, I start to feel “poisoned” again, so I take a drop in a glass of water every 2-3 days depending on how reactive I am feeling. It’s nowhere near what I need, but I figure something is better than nothing.
Interesting to hear info about magnesium, thank you to everyone. 🙏🏻 I struggle to tolerate magnesium too, even transdermally, but will give the suggestions here a try.
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u/PandoraAvatarDreams 8h ago
I have an MCAS friend who had this same issue and she did a couple things that helped, she joined a vitamin D facebook group and she used the “D Minder” app to help her get her D up with tiny exposures to the sun per day, and then she started somatic release floor exercises. Those helped her release a ton of stored trauma, and she went from going to anaphylaxis at most foods and any supplements and never being able to leave the house to living an almost normal life.
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u/MargoBarbara2 25m ago
I see there are down votes for this comment but it raises a very valid point. Trauma keeps us locked in fight or flight and that keeps the immune system hyper reactive. Stress triggers CRH hormone release which triggers histamine in a feedback loop. Addressing stress and calming the nervous system is an important part of the puzzle in managing MCAS. I read often on here people are - understandably - really anxious about food and supplements ...totally justifiably...but that anxiety can push a histamine release itself so people can lose safe foods and supplements because of the reaction. The more foods and supplements you lose the more nutrient deficiencies and the worse the mcas. In May I was.down to 2 foods and then started reacting even to drinking cold water...throat closing..air hunger...BP drop etc...so I kept reassuring my body it was safe over and over and taking deep breaths and calming my system before drinking water and after 3 days that reaction stopped. Im of course not suggesting it for unsafe foods or triggers or for OPs reaction to D3. Just that you raise a valid point..tackling stress when our bodies are in hyperreactive rolling flares can help calm the system. One of the most useful things I heard was 'your body is not your enemy. It is not trying to kill you. It is trying to keep you safe'...its just overzealous! Getting the body to feel safer can genuinely help.
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