Problem with supplements especially vitamin D?

[Waverunner]

Thanks SaraM and everyone. It seems I'm not the only one having issues with vitamin D. If I figure out any way around it I'll post it here.

Do so, please. What is true for one person does not have to be true for another person and what is good for normal people can be harmful for people with ME.

 

[Ocean]

Waverunner, I just remembered, something else I tried before was dry vitamin D3. I never gave it a fair chance. I didn't expect it to work well so I returned it shortly after I started it. But, if I remember right, I did NOT have side effects from it. Although maybe I just wasn't on it long enough. That is something I may try again if I try vitamin D any time soon. Again, if I do, I'll post back here. If anyone else has had experience with dry vitamin D3 in terms of doing differently on it vs. the oil form, I'd love to hear it. Here's on discussion I found on it online. It might be not as effective in getting levels up but if it works without those same side effects it might be worth trying for me. Frankly the depression I got from regular use of D3 was enough to scare me off it for a long long time. It might take some time to be able to get myself to try it even in the dry form.
http://ask.lef.org/Topic1151.aspx

 

[adreno]

Adreno,

So could the lack of viamin K (I take magnesium already) explain the symptoms other than brusing, like tinging, resltess leg and the depression? The depressed feeling especially was one reason I had to stop vitamin D. It was clearly connected to it somehow, came when I was on it and went away every time I went off it, and that happened several times.

I can't say what causes your reactions. What I do know is that vit D will activate your immune system. When that happens you might initially get all sorts of bad reactions, if you have any latent infections. This is the same reaction as when you get the flu. It's not the virus per se which makes you feel rotten, it's your immune system's reaction to the virus (inflammatory cytokines aso).

You might try a slow titrate and see if your system calms down after a while.

A way to test this theory would be to try an anti inflammatory when you get the reaction. Something like ibuprofen or curcumin should do. If that makes you feel better it's likely an inflammatory reaction of your immune system, and my guess is it will pass after a while.

 

[Ocean]

I can't say what causes your reactions. What I do know is that vit D will activate your immune system. When that happens you might initially get all sorts of bad reactions, if you have any latent infections. This is the same reaction as when you get the flu. It's not the virus per se which makes you feel rotten, it's your immune system's reaction to the virus (inflammatory cytokines aso).

You might try a slow titrate and see if your system calms down after a while.


A way to test this theory would be to try an anti inflammatory when you get the reaction. Something like ibuprofen or curcumin should do. If that makes you feel better it's likely an inflammatory reaction of your immune system, and my guess is it will pass after a while.

I didn't really get what seemed like immune type symptoms. I got restless leg, severe bruising like to the level you'd get in a bad car accident, constant feeling of mild or moderate nausea, very loose stools every day, tingling and pinpricks on the body, and eventually very depressed mood. That's all I currently remember since It's been a while since I tried it. Do those sounds like it could be from an overactivited immune system? I did seem to have more allergies which I can see fitting the immune system theory. But in all I did not feel flulike on vitamin D. It felt like something foreign I'd not experienced before. It also affected sleep, over time making me more and more sleepy and sluggish and out of it at night and unable to stay asleep in the mornings. The only positive I seemed to experience from it was stronger fingernails.

I also tried using lower doses and using them less often, but had the exact same reactions on a much smaller dose taken just a few times over the period of one or two weeks. I think the dose I used at the low end was maybe 200 or 400.

If I try again, I'll probably give the dry vit D a chance this time.

I still don't know if my symptoms are from vitamin d maybe competing with or affecting other things in the body and creating a deficiency in something else (like a deficiency that would cause severe bruising, vitamin k maybe) or if I'm just not tolerating vitamin d or both. It looks like it might be both since I don't think all the other symptoms can all be explained by lack of vitamin K or lack of any one element. Or can they?

I do know that even off vitamin d I tend to go through periods of bruising, so something must be at a lowish level and then gets sent into too low with some body change, like medication change or things like that. For example after taking antibiotics for a while I started getting bruises again. Nothing like the ones I had on vitamin D but obviously this is something I'm prone to until I figure out what is causing it. Believe it or not, with vitamin D there was one huge bruise that eventually faded but still remained in some lighter form for nearly a year, or maybe even longer! After I went off vitamin D all the side effects including depressed mood, tingling, and bad bruising went away. When I'd start back up, they'd start back up again even after very few doses.

 

[penny]

Vitamin D makes my muscle pain much much worse.

Me too. Pain and cramping.

 

[SaraM]

Ocean, I took dry Vit D for a few months, and it did not raise my level a bit.

 

[rlc]

Hi Ocean, although it may be related to vitamin K levels, Id recommend getting a doctor to test you, large doses of vitamin D should be taken with a Doctors supervision, because it can cause bad reactions in some people who have underlying health problems that havent been diagnosed, it can cause Calcium levels to rise in some people and effect the parathyroid glands, Doctors usually check Calcium, PTH (parathyroid) Levels, Vitamin D can also have bad reactions in people who have other missed conditions like a Kidney problem. Vitamin D can react with some other medications as well, theres some information on all of this here http://www.nlm.nih.gov/medlineplus/druginfo/natural/929.html

Increased bruising is defiantly not a common symptom for people taking Vit D, so I would highly recommend talking to your doctor about it, in case there is some other medical problem that has been missed. Doctors can also test for vitamin K deficiencies.

All the best

 

[rlc]

Hi SaraM and Penny, muscle pain and cramping when taking Vitamin D is usually caused by having a Magnesium deficiency as well. A magnesium deficiency is also the number one reason why people vitamin D levels dont go up with treatment, (you need magnesium to absorb Vitamin D)

The Vitamin D council says this

Vitamin D has no known side effects. If one experiences any of the following symptoms due to supplementing with vitamin D - or with sun exposure - a magnesium deficiency is most likely the reason why:
irritability or anxiety
nausea
headaches
insomnia
fatigue
muscle cramps/twitching
weakness
constipation
link http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-cofactors/magnesium/

Taking vitamin D with a lot of magnesium has helped me immensely and has got rid of a lot of my symptoms, but I did feel worse taking Vitamin D without magnesium, so from my experience taking the two together has been great, but everyone needs to remember if their taking large amounts of Vitamin D to get there doctor to keep an eye on things and monitor calcium levels.

All the best

 

[penny]

That's interesting rlc, though I was actually taking a lot of magnesium (up to, maybe past, bowel tolerance) and not very high levels of D (200 one round and 2000 another). To some degree, for me, whether vitamin D was the direct or indirect cause of my muscle cramping and pain doesn't really matter. Taking it makes me feel much worse, so I don't take it.

I also have reasonable D levels in my blood (42 out of a 30-80 range). And high-normal calcium.

It's all so individual!

 

[Ocean]

Ocean, I took dry Vit D for a few months, and it did not raise my level a bit.

That's what I was worried about so I didn't give it much chance. But in that thread I posted from another site it seems it did raise levels for the poster. One thing I think you have to do with dry vitamin d is take it with food, preferably fat.

 

[Ocean]

Hi Ocean, although it may be related to vitamin K levels, Id recommend getting a doctor to test you, large doses of vitamin D should be taken with a Doctors supervision, because it can cause bad reactions in some people who have underlying health problems that havent been diagnosed, it can cause Calcium levels to rise in some people and effect the parathyroid glands, Doctors usually check Calcium, PTH (parathyroid) Levels, Vitamin D can also have bad reactions in people who have other missed conditions like a Kidney problem. Vitamin D can react with some other medications as well, theres some information on all of this here http://www.nlm.nih.gov/medlineplus/druginfo/natural/929.html

Increased bruising is defiantly not a common symptom for people taking Vit D, so I would highly recommend talking to your doctor about it, in case there is some other medical problem that has been missed. Doctors can also test for vitamin K deficiencies.

All the best

Thank you. Boy I wish I had a good doctor who had checked any of that. My doctor at the time had me take vitamin D but dismissed that my side effects were related to it and did not test for anything else. I have such a hard time getting out of the house to get to the doctor it makes it so hard to follow up on all the various issues that seem to come up with this illness. I'm going to write down all you said about and make it my goal to see my doctor and check on all that within the next few months. Thank you so much!

 

[Ocean]

That's interesting rlc, though I was actually taking a lot of magnesium (up to, maybe past, bowel tolerance) and not very high levels of D (200 one round and 2000 another). To some degree, for me, whether vitamin D was the direct or indirect cause of my muscle cramping and pain doesn't really matter. Taking it makes me feel much worse, so I don't take it.

I also have reasonable D levels in my blood (42 out of a 30-80 range). And high-normal calcium.

It's all so individual!

Like you Penny, I was also not going too high (compared with some people) about 2000 a day at most I think. Mine is quite a bit lower than yours Penny. I wish it were higher naturally so I could just not worry about taking it!

 

[penny]

Like you Penny, I was also not going too high (compared with some people) about 2000 a day at most I think. Mine is quite a bit lower than yours Penny. I wish it were higher naturally so I could just not worry about taking it!

Do what you feel like you need to do, but don't forget, you aren't alone in not doing well with vit. D. Good luck!

(ps. a thread from earlier in the year on the topic, in case it's of interest http://forums.phoenixrising.me/showthread.php?10499-Vitamin-D-and-Increase-in-Symptoms )

 

[PokerPlayer]

Vitamin D seems to help quite a bit for me. I take at least 5000 iu's per day. Under doctors orders I took 10,000 iu's per day for 4 months and it helped a lot with lessening anxiety and PEM. Only negative was it caused brain fog, weird huh?

 

[rlc]

Hi Ocean, glad to help, sounds like your doctor completely dropped the ball, vitamin D is well known to cause side effects in some people who have other underlying health conditions, (and they are taught this in med school, sigh) if you print out the article that I gave you the link for and take it to your doctor it might jog their memory, or maybe you need a better doctor.

If youre having such a bad reaction to Vit D Id say it would be wise to stay of it until you find out why, just in case. Then when the reason for the reaction has been found, a good doctor should be able to come up with a treatment plan to fix the low vitamin D as well. I know what you mean about being hard to get to see a doctor, whatever happened to house calls?

All the best

 

[rlc]

Hi Penny, if your levels of vit D are good, then theres really no need to take it, so I wouldnt worry about it, but my advice would be the same for you as for Ocean, make sure your doctor knows about the reaction, and investigates other possible causes for it, just in case there is something else going on.

Also it can sometimes take a long time (months) for magnesium levels to go up to correct levels, it can be difficult for the body to absorb in supplement form, so its a possibility that it was the vitamin D causing the magnesium deficiency symptoms to occur. In my case I was taking 50,000 iu of vitamin D a week and large amounts of magnesium, and it took about eight weeks of taking the magnesium before I stopped getting a reaction for a few days every time I took vit D, (muscle cramps, pain and twitching, heart pain and palpitations, fatigue etc) but it all came right in the end, and I feel a lot better. So maybe your magnesium levels were still a bit low?? But tell a doctor about the reaction, just in case.

All the best

 

[Charles555nc]

When i take vitamin D, I get lock jaw for a couple days and my adhd gets worse. People with bad reactions like that do well on the Marshall Protocol.

 

[Carrigon]

For me, the brand makes the difference. I have to take a more natural brand. If I take some of the commercial brands, I get allergic reactions to the fillers and junk in them. And don't forget, many commercial brands stuff aspartame in the vitamins. So that right there is where your symptoms are coming from. Colorings, aspartame, fillers. The more natural brands usually just put gelatin or olive oil in them.

 

[Ocean]

For me, the brand makes the difference. I have to take a more natural brand. If I take some of the commercial brands, I get allergic reactions to the fillers and junk in them. And don't forget, many commercial brands stuff aspartame in the vitamins. So that right there is where your symptoms are coming from. Colorings, aspartame, fillers. The more natural brands usually just put gelatin or olive oil in them.

Thanks Carrigon. I don't think that holds true in all cases though. Unfortunately in my case, I tried many types, all of them quality ones and still did not tolerate them. I did use the olive oil kind, I think it maybe was even organic, and a very good brand, and I still had the issues I noted in my original post. There must be something else going on, I just don't know what it is.

 

[Freddd]

I know a lot of people here take a lot of supplements. I seem to have a lot of problems with them. It seems every time I take anything on top of my usual multivitamin I get a problem. It seems when I add one supplement I start immediately getting symptoms of deficiency in something else. I'm guess whatever that supplement competes with for absorption?

I especially have trouble with vitamin D. I start getting really bad bruises right away. If I take it for any extended period I also end getting depressed (which I normally do not experience), getting tingling in my body, and getting restless leg really bad. I thought the bruising may have to do with vitamin K but I'm not sure. And I'm not sure about the rest of the symptoms. I haven't taken it in a while so I can't remember other symptoms it gave me.

Anyway these kinds of reactions make it hard to take supplements. I try to correct the effect by taking another supplement that I think is being affected and then that one causes an issue and so on.

I have found one place online where other people describe similar problems with vitamin D but overall people seem to do fine on it even at high doses for long periods. Sometime I may be able to see a naturopath but I'm not at that point just yet for several reasons. In the meantime I'm looking to see if anyone else has had similar experiences, especially with vitamin D. It feels like I have such a delicate balance and as soon as I add one thing to the mix it tips the scales.

Hi Ocean,

I have watched people shudder from one induced deficiency to another trying to pick of the elephant with a BB gun. In the active b12 protocol I have watched it have zero effect until the person took vit D (most limiting factor for that person) then have a ton of b12/folate startup followed in 3 days by induced potassium deficiency.

This who scene can happen by taking inadequate doses of most everything so that it is roundrobin deficiencies correcting one thing at a time. My experience has been that people take all the basics, and then add mb12, adb12, metafolin and be prepared for the potassium deficiency and except for folates for instance, not any competition for absorbtion. Folate and cobalamin have specialized active absorbtion and transport mechinisms. Folic acid appears to comperte with folinic acid and methylfolate.