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Extreme sensitivity to vitamin D - need help!

YippeeKi YOW !!

Senior Member
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16,047
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Second star to the right ...
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
I read the same thing, and if I hadnt been in such bad shape while experimenting with my doses and dose intervals of the magnesium, I probably would have been scared off.

As I said, I found that taking small doses of mag at close intervals (50 mgs every 45-60 mins with Vit C) worked for me, and I was taking between 1800 - 2200 mgs a day at the peak of my symptoms, with absolutely no bad side effects and several very good ones, over a period of 1 1/2 years. I've backed down the amg a bit becaue I'm not dealing with the same set of symptoms, but when things get wonky, I boost it again.


So fear not, let your body tell you when to back off, and I'm hoping that it helps you as much as it's helped me :thumbsup::thumbsup: :hug:....
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
So this has turned into full blown panic attacks every day for me. Does anyone have any experience with this with vitamin D? It’s been almost 75 days and I continue to struggle badly.
I had to drop Vit D completely for a couple of years, along, gradually, with every other supplement that Id been taking, incident-free, for time lost to memory ....

Vit D wasnt the only cause of the massive, MASSIVE, chest-ripping, muscle clenching, head pounding, shaking, sweating, vomiting, endless, 19-24 hr long anxiety/panic attacks that ripped me apart for around 18 months or so, but it clearly contributed, because until I found a way to deal with the anxiety, it would get worse every time I tried to add Vit D back.

Vit D was critical to me, since I live like a troglodyte with an almost complete lack of sunshine.

DEALING WITH THE ANXIETY, THE ENVELOPE PLEASE ....

I was in such terrible shape that words fail me. At least any polite ones.

I flailed around endlessly, researchin frantically in the moments that I had any kind of cognitive abilties at all, however limited in duration and scope, reading dull research papers and florid websites whose information always ended with 'BUY HERE', until by trial and error, and a degree of desperation that was truly impressive, I finally found the answer for me, at least. Hoepfully, it'll help you as well....

I knew that Vit D was required for absorption and utilization of magnesium, but no amount of additive magnesium did much of anything at all, until I started clipping my 100 mg tablets of magnesium glycinate (Solgar's Chelaated Magnesium, 100mg) in half for 50 mg doses, and started taking that every 30 - 60 min's, depending on the severity of the anxiety. Some days I was taking upwards of 2000 mgs.

Every few doses I added 500 mgs of Vit C.

It took probably 2-4 weeks before I noticed a definable improvement, and then another few months for that indication of improvement to turn into a steady remission of symptoms, and I still take 50 mgs of mag gly every few hours, just cause, you know, dont ever want to go back there again ....

Hope this helps, @Jackpharm .... I know what shrieking, screaming misery that is ....
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
I am so sorry to hear that you're still having problems.

At this point, it may not be the vitamin D, since it has been so long since you last took it. (June 23)
But vitamin D can boost the immune system, so maybe this is an immune response?

Also, some people get neurological symptoms when they take magnesium without balancing it out with calcium. This happened to me, and I find that when I take magnesium, I need to balance it out with 2.5 times as much calcium. (The body needs a stable ratio of calcium-to-magnesium, although different people may require very different ratios.) Fortunately, this is an easy thing to test for. Just take calcium supplements for a couple days and see if the panic attacks are alleviated.

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.

How are your Thyroid Stimulating Hormone (TSH) levels now? (Maybe it is a thyroid issue?)

Best wishes.
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
I’ve been doing 400-500mg of that exact product twice per day. I thought by now the Vitamin D would be out of my system. I feel like I’m literally going crazy. Crying, constant fear. It’s debilitating.
Please read my full post: I did the same thing that you express above with absolutely ZERO effect.

And giving the Vit D enough time to work its way out of my system was no help either, and seemed to make no difference at all.

IT WASNT TIL I BROKE THE MAG GLYCINATE DOWN TO 50 MGS EVERY 30-60 MINUTES OF EVERY DAY, WITH DOSES OF 500 MGS OF VIT C THROWN IN EVERY FEW MAG DOSES, THAT I EXPERIENCED ANY IMPROVEMENT, AND THAT IMPROVEMENT JUST KEPT GETTING BETTER AND BETTER.

I have no explanation for why that treatment protocol worked for me, but it did, and it saved my life.
 
Messages
54
I’ve been doing 400-500mg of that exact product twice per day. I thought by now the Vitamin D would be out of my system. I feel like I’m literally going crazy. Crying, constant fear. It’s debilitating.

I'm so sorry to hear that you've gone through such a hard time and I really hope that things improve for you soon.

I also had a very extreme reaction to Vitamin D when I started taking 1000iu a day. It massively improved my severe insomnia - I went from waking 5-7 times a night to just once or twice. But it also made me so depressed that I would just cry all day and whilst I didn't have suicidal intentions, on a few occasions I wished I wasn't alive. It wasn't like me at all - the only other time I've experienced proper depression was when taking the combined contraceptive pill. Yet, I kept trying the Vitamin D because being able to get more sleep at last was such a relief, but thankfully I realised it was the cause of the sudden, serious change in my personality and that I needed to stop taking it. Each time I stopped the Vitamin D my mood went back to normal within days which makes me wonder if something else might be going on for you?
 

nyanko_the_sane

Because everyday is Caturday...
Messages
655
So this has turned into full blown panic attacks every day for me. Does anyone have any experience with this with vitamin D? It’s been almost 75 days and I continue to struggle badly.
I hope you are doing better. I suffered through a few months of panic attacks when I first became sick. The panic attacks eventually tapered off, I was prescribed paxil which helped a bit.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
No I just took it by itself as all forms of magnesium make my insomnia much worse.
Nutrients don't work in isolation. They are part of pathways and work with other cofactors. Being deficient in other cofactors can cause many different unpleasant symptoms.

As for insomnia, there are a lot of reasons for it. I take magnesium glycinate before bed and magnesium malate in the morning, as one tends to promote sleep and the other tends to promote energy needed throughout the day. Over 70% of healthy adults are deficient in magnesium, which is needed for a lot of different pathways in the body. To battle insomnia, you might look into your hormone levels, amino acid levels, and melatonin. I found that citrulline and ornithine have greatly improved sleep, and taking theanine also helps to promote sleep.

Vitamin D is essential for the immune system to work properly, so really getting to the bottom of what the issue is with being able to take it is important, unless you live near the equator.
 

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
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

You are taking 5000 IU per day? Why? I have lupus so have to avoid sun and I only need 2000 IU per week from supplements 1x/week on Sunday plus the vitamin D I get from fish and dairy. When I had suspected covid I quadrupled it only for two weeks (4000IU 2x/week) because it lowers cytokine hyper-reactivity. What is the rationale for megadosing? Sounds fishy.
 

Davsey27

Senior Member
Messages
514
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.

Dr. Paul Cheney, semi-retired ME/CFS specialist, used to recommend that ME/CFS patients try to increase vitamin D by trying to get 15 minutes of sunlight exposure daily, which is much easier said than done for housebound/bedbound patients. If that's not possible and vitamin D levels in the blood are low, then he recommends taking 400 IU of vitamin D daily.

The only time I can tolerate vitamin D in higher doses is when I have also been on corticosteroids, which tamp down inflammation by suppressing the immune system. Might be something to ask your doctors about if your flare doesn't resolve.

I agree with this More sunlight (if you can tolerate this)
And lower doses of d3 perhaps with K2 which helps which can help with excess calcium in the blood

I used now foods d3/k2 mk7 at doses around 2,000iu
Perhaps 400iu may be good to minimize side effects Sunlight can be good for thyroid as well(if tolerated
 

Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
I think you added the Vitamin D in and your body said, "Ah ha...now I can start repairing some things," however when it went to recruit the other vitamins, the cupboard was nearly bare. It used what it could but wanted to keep going and so you may now have severe deficiencies in other vitamins.

There is a doctor in Brazil who successfully treats his MS patients with high doses of Vitamin D. I've also read 1-2 cases of ME that improved. When I tried to add larger doses in, I did feel much better, however, within a few days my teeth got very loose and started to bleed. I think I triggered Scurvy in myself. Now I make sure to take Vitamin D with a dose of Vitamin C too.

One of the symptoms of Beri Beri is numbness and tingling in the hands and feet as well as paralysis (which maybe be why you have the numbness in your face). One of the symptoms of Pellagra is restlessness or anxiety. I'm not saying that is definitely what is going on with you however, it wouldn't hurt to add in some cofactors back in now too and see if that starts to resolve your current situation.
 
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Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
You are taking 5000 IU per day? Why? I have lupus so have to avoid sun and I only need 2000 IU per week from supplements 1x/week on Sunday plus the vitamin D I get from fish and dairy. When I had suspected covid I quadrupled it only for two weeks (4000IU 2x/week) because it lowers cytokine hyper-reactivity. What is the rationale for megadosing? Sounds fishy.
agree with this More sunlight (if you can tolerate this)
And lower doses of d3 perhaps with K2 which helps which can help with excess calcium in the blood

I used now foods d3/k2 mk7 at doses around 2,000iu
Perhaps 400iu may be good to minimize side effects
It depends on one's genetics and other factors, like latitude and time spent outdoors

My vitamin D level dropped from 56 to 36 in 2 months after I dropped my dose from 10,000iU to 5,000IU. The Cleveland Clinic put my mom on 50,000IU after she broke her shoulder and required a reverse total shoulder replacement (ball and socket reversed). Before that her doctors had missed the fact that she's gone from 5'9" to 5'3" and her shin bones were significantly curved.

400IU wouldn't do much in my family...nor would 2,000IU.
 

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
It depends on one's genetics and other factors, like latitude and time spent outdoors

My vitamin D level dropped from 56 to 36 in 2 months after I dropped my dose from 10,000iU to 5,000IU. The Cleveland Clinic put my mom on 50,000IU after she broke her shoulder and required a reverse total shoulder replacement (ball and socket reversed). Before that her doctors had missed the fact that she's gone from 5'9" to 5'3" and her shin bones were significantly curved.

400IU wouldn't do much in my family...nor would 2,000IU.

RDA is 400 IU. 400 IU/day x 7 days/week=2800 IU per week. I'm not talking about rare genetic mutations. That's not megadosing.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
RDA is 400 IU. 400 IU/day x 7 days/week=2800 IU per week. I'm not talking about rare genetic mutations. That's not megadosing.
Yes, set by the myopic bone doctors who don't think of any other part of the body. And, it seems to be wrong as the cast majority of people living in the northern hemisphere are deficient. And more and more info is coming out on how important vitamin D is for the immune system and resisting COVID.

https://pubmed.ncbi.nlm.nih.gov/21849106/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3166406/

https://www.clinicalnutritionjournal.com/article/S0261-5614(20)30601-4/fulltext

https://www.wsj.com/articles/can-vitamin-d-help-fight-covid-19-11604326204

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7276229/#__ffn_sectitle

This discusses studies if various health problems in relation to dosing, where they found 400IU was completely ineffective.

Here are suggestions in dosing, pretty much all are based on measuring D levels in patients:

https://thorax.bmj.com/content/70/10/919

https://lpi.oregonstate.edu/mic/vitamins/vitamin-D

And, there's this roundup of recommendations:

"The Vitamin D Council recommendation adults take 5,000 units of Vitamin D daily. The Institute of Medicine recommends taking no more than 4,000 units daily. The Endocrine Society Practice Guidelines state that up to 10,000 IU of vitamin D3 daily is safe for most adults."
 

livinglighter

Senior Member
Messages
379
Yes, set by the myopic bone doctors who don't think of any other part of the body. And, it seems to be wrong as the cast majority of people living in the northern hemisphere are deficient. And more and more info is coming out on how important vitamin D is for the immune system and resisting COVID.

https://pubmed.ncbi.nlm.nih.gov/21849106/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3166406/

https://www.clinicalnutritionjournal.com/article/S0261-5614(20)30601-4/fulltext

https://www.wsj.com/articles/can-vitamin-d-help-fight-covid-19-11604326204

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7276229/#__ffn_sectitle

This discusses studies if various health problems in relation to dosing, where they found 400IU was completely ineffective.

Here are suggestions in dosing, pretty much all are based on measuring D levels in patients:

https://thorax.bmj.com/content/70/10/919

https://lpi.oregonstate.edu/mic/vitamins/vitamin-D

And, there's this roundup of recommendations:

"The Vitamin D Council recommendation adults take 5,000 units of Vitamin D daily. The Institute of Medicine recommends taking no more than 4,000 units daily. The Endocrine Society Practice Guidelines state that up to 10,000 IU of vitamin D3 daily is safe for most adults."

I made a post about experiencing remission when I accidentally took 40,000 IU a day for 7 days at the end of last year, lasted for about 7 - 8 months. The only thing I was taking alongside it was D-ribose which I started several months beforehand.

I recently came across an investigative COVID 19 study about the possible role of vitamin D suppressing cytokine storm.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7465887/
 
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Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I've been very vigilant about trying to be as healthy as possible with COVID going around, as my immune system doesn't work so well. Twice in the last few months I felt run down as if I was coming down with something, And both times I doubled up on my vitamin D, taking 20,000 IU a day, along with C, and mushrooms, at both times was able to quickly kick whatever it was.

I've been seeing a lot of research on vitamin D and COVID as well as anecdotal reports, and it looks like it's a very good idea to ensure one is replete and vitamin D which might help reduce the likelihood of a severe case.
 

livinglighter

Senior Member
Messages
379
I've been very vigilant about trying to be as healthy as possible with COVID going around, as my immune system doesn't work so well. Twice in the last few months I felt run down as if I was coming down with something, And both times I doubled up on my vitamin D, taking 20,000 IU a day, along with C, and mushrooms, at both times was able to quickly kick whatever it was.

I've been seeing a lot of research on vitamin D and COVID as well as anecdotal reports, and it looks like it's a very good idea to ensure one is replete and vitamin D which might help reduce the likelihood of a severe case.

I did the same a couple months back. I came down with another "flu like" illness, so took 10,000 IU a day with potassium iodine and zinc and managed to kick whatever it was. My phlegm was green and my throat was on fire, but the next day everything I was coughing up came out clear and I started to rapidly feel better.