• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Some questions for those who have been taking vitamin D3

jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
Personally wouldn't take such unnatural high prescribed boluses at once, which often aren't even vitamin D3 but D2.
I had no idea it would effect me in such a crazy way. I was following a new Dr's orders.
Please excuse my ignorance and I do appreciate the help.

She said to discontinue her prescription and take D3 1,000 in a week. She suspects parathyroid issues, I am in a spot in the world that is still mainly sending CFS sufferers to psychiatrists. She is the closest I've come to one who is interested in treating me. I cannot afford to travel and am housebound for the past year.

Do you think I should supplement with d at all? Thanks for the advice.
 

pamojja

Senior Member
Messages
2,384
Location
Austria
Please excuse my ignorance and I do appreciate the help..

Do you think I should supplement with d at all?

Never apologize for asking questions. That's one reason forums are really good for. Nobody knows everything. And we are all here to learn more. :hug:

I would, even with such adverse reaction and low serum levels, by starting at the lowest possible dose, increasing gradually over weeks, months and years. While rechecking serum levels. Also good advise by Crux to add those co-factors working with vitamin D gradually in. In one study up to 50% females couldn't for example convert beta-carotene into active vitamin A. Also very important with vitamin D is plenty of magnesium.

Fat soluble vitamins, such as K2, E,and A are needed for Vitamin D uptake.
 

jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
I am taking magnesium for 3 months now. It is helping with the muscle pain and cramps a bit up to at least 800 mg daily now.
What dose of K2, E and A at this time?

I am very light and sound sensitive right now.
This past spring I got a horrible sunburn from reading in the shade for 2 hours in the morning.
I tremor a lot also
 

iwillwin1day

Senior Member
Messages
191
Vitamin D can increase the production of nitric oxide, a gas that relaxes blood vessels and lowers blood pressure.
Vitamin d increases blood pressure by causing vasoconstriction. Vitamin d decreasing blood pressure in someone is due to cofactor deficiency/refeeding syndrome.
 

pamojja

Senior Member
Messages
2,384
Location
Austria
I am taking magnesium for 3 months now. It is helping with the muscle pain and cramps a bit up to at least 800 mg daily now.
What dose of K2, E and A at this time?

Nobody knows, since all those nutrients have been very rarely studied in combination, much less with chronic conditions. My approach has always been starting with lowest possible doses to avoid any adverse reaction, and gradually increase. Some do suggest the vitamin A to D ratio should be at least 2-5:1. Some other think no vitamin A at all is needed with sufficient dietary beta-carotene. My experimentation showed I fall in the first camp. Though I really slowly titrated preformed vitamin A, only when I reached such a 3:1 ratio (in IUs) recently, suddenly my infrequent psoriasis outbreaks ceased completely. But vitamin D serum levels suddenly doubled with the same intake (about 7,700 IUs/d for 10 years).

Serum retinol and retinol binding protein in my case are still in the lower half of normal. When one starts with low doses of them all and raises them slowly together, adverse reaction are much less likely and still easier to correct by adjusting co-factors. With vitamin E I also choose to take a good Gamma-tocopherol supplement to avoid depletion of sole alpha-tocopherol supplementation (also important not to take synthetic vitamin E). Since these fat-soluble vitamins all have longer half-lifes, it might be much more economical to buy higher doses (though not as high as the 50,000 IUs) and take them every 2-3 day.

I am very light and sound sensitive right now.
This past spring I got a horrible sunburn from reading in the shade for 2 hours in the morning.
I tremor a lot also

To my surprise comprehensive supplementation made me completely immune to sunburns. Since I never even heard of such from others, and take so many nutrients it's difficult to tell which have caused it. Suspect some synergy between all antioxidants (high-dose vitamin C..), along with xanthophylls (lycopene, astaxanthin, lutein..) which have been shown to have some protective effect.
 

Galixie

Senior Member
Messages
219
[GALLERY=media, 844]Vitamin D by Galixie posted Oct 2, 2018 at 2:00 PM[/GALLERY]

For whatever this is worth, I thought I'd try to contribute.
My low vitamin D level was first discovered in 2008 and I was put on prescription strength for a couple of months. Weirdly, at the end of the couple of months I started have bone pain. Almost like delayed rickets.

My levels seem to stay in the low or just-within-range area. I haven't been taking supplements for vitamin D since 2015 and my level is still just a little low.

I really never noticed any symptom benefits from taking vitamin D (in any form), which is why I haven't really bothered to keep up with taking it.
 

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
The one I take is a liquid with a dropper, so it is very easy to start with tiny amount , daily or every other day, and very gradually increase, over time.

Or, if someone prefers for themselves, to begin higher, to push up levels, and then lower to maintain.

It s the only one of all the ones that I tried , which has no negative effects I can discern,
and which successfully got my blood test level of D, to increase up from the basement level, which I feel is good for me, as I hardly ever get outdoors, and when I do, I am covered up.

It includes 2 forms of K, some K1 and some K2. And a bit of vit E, and not much else, seems high quality to me.
The full dropper is 2,000 IU vit d3, but one could take 1/2 dropper, or less to begin, or more, whatever increments one wants, you have control over it.

The brand is designsforhealth, its called Emulsify-D3 Synergy.
Its expensive but lasts a long time, and like I say, its the only one that I personally did not have negative effects , and that did raise my level some.
 
Last edited:

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
I use 400 iu daily in summer ( as codliveroil) and add twice 5000 a week in winter.
I started taking supplementation when I became sick, as I've always been walking and working in the sun and all of a sudden was bedbound. I tjhought it logical, was the first sup I started taking.

in the summer that I was falling ill ( so before supplementation) D25OH was 107.

last year my new GP had it measured twice, 106 and 111 ( so with the abovementioned amounts)
I'll stay on this dose until I'm (hopefully) able to get in the sun again.

HI Sundancer,
This all made sense to me and is very similar to me, except that your winter dose seems high to me,,
and the lab readings of 106 and 111 seem too high to me.
I am not a doctor and do not know, of course, but personally, I would lower your doses, and let that number go down some.
Is your GP an expert on vitamin levels?

I wouldn't want mine to keep going up, if it was as high as yours, and I wouldn't even want to see my numbers go up to 100. I personally would feel safer with a lower number than your tests. From my readings on the subject, my guess (I could be completely wrong) is that a number between 30 and 75 or 80, would be more reasonable.
 

jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
There is so much to learn about this, but i do feel better now that my blood pressure is not getting is not stroke range every time I get a little upset!

I really don't want to have a stroke and CFS/ME and Fibro...

Give me a DNR to sign!
 

pamojja

Senior Member
Messages
2,384
Location
Austria
This all made sense to me and is very similar to me, except that your winter dose seems high to me,,
and the lab readings of 106 and 111 seem too high to me.

If someone isn't concerned with this level, it's because its not ng/ml (30-100 normal range), but nmol/L (75 - 250 normal range). The conversion factor between the 2 is 2.5.

I really never noticed any symptom benefits from taking vitamin D (in any form), which is why I haven't really bothered to keep up with taking it.

Supplementation of nutrients or diet in my case rarely had immediate benefits. But with having a salad of diagnoses (PAD, COPD, T2D, ME/CFS..) I could see right from the beginning a beneficial improvement of various lab markers. Which only after 6 years meant the difference of having a 60% walking-disability, or having it revoked.
 
Last edited:

Sundancer

Senior Member
Messages
569
Location
Holland
HI Sundancer,
This all made sense to me and is very similar to me, except that your winter dose seems high to me,,
and the lab readings of 106 and 111 seem too high to me.
I am not a doctor and do not know, of course, but personally, I would lower your doses, and let that number go down some.
Is your GP an expert on vitamin levels?

I wouldn't want mine to keep going up, if it was as high as yours, and I wouldn't even want to see my numbers go up to 100. I personally would feel safer with a lower number than your tests. From my readings on the subject, my guess (I could be completely wrong) is that a number between 30 and 75 or 80, would be more reasonable.

Sundancer, do you eat dairy?

If someone isn't concerned with this level, it's because its not ng/ml (30-100 normal range), but nmol/L (75 - 250 normal range). The conversion factor between the 2 is 2.5.



Supplementation of nutrients or diet in my case rarely had immediate benefits. But with having a salad of diagnoses (PAD, COPD, T2D, ME/CFS..) I could see right from the beginning a beneficial improvement of various lab markers. Which only after 6 years meant the difference of having a 60% walking-disability, or having it revoked.

I'm happy with this, first because it is about the same level as I had before I became ill, tested in the second half of the summer. Second the advice was given to me by a guy that knows much about vitamins, and third because my GP has looked at my amounts, told me this is a good sup ( well, that was no news to me, but one has to give a GP something to do, so that he can feel useful) and my bloodlevels are OK.

looking at my tests, I see that @pamojja is right, reference is given as 50-250

but I thank you all for you concerns
 
Messages
53
Location
UK
Was going to make a thread but luckily I saw this one. I've been prescribed a single high dose of 25,000 IU vitamin D3 to be taken once a week for 6 weeks, followed by a lower daily dose for a couple of months. Is the weekly dose of 25,000 IU enough to create toxicity and/or side effects?

I've read that in order to produce the side effects of hypercalcemia you'd need to ingest either a single massive dose (300,000 IU or more) or a daily dose of at least 40,000 IU for weeks. I also read that in rare instances certain health conditions can cause sensitivity to D3. Is ME considered one of those conditions?

It's probably me being a hypochondriac but I feel different since I started taking them and not in a good way. On the night I take the high dose I have broken sleep and unpleasant vivid dreams, and I feel like there's some low level nausea going on, but this could simply be my ME.
 

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
@Artorias
Of course I don't know about your response, but many people do have reactions that include your symptoms, to the big single doses of Vit d, so I would not assume it is "just ME" or that your thought is wrong. It could be reactions to it.

Myself, I much prefer, taking a small dose, more often, which is what we would take in naturally if we could,
than the large doses that most doctors prescribe.
Many doctors are agreeable to that, if the patient suggests it.

I don't know what you should do for yourself. I wonder if letting your doc know, would help or not. They might say to take different ones that you can buy without script, at lower doses, unless they think your body will get used to those doses you are taking.
 
Messages
53
Location
UK
What concerns me is hypercalcemia, but I'm probably just being paranoid :cautious: I might ask my GP for another blood test to see if there's anything like that happening.