Anyone Know What Causes The Adverse Reaction To Vitamin D?

[kitchmill]

I know at least one other person here said they had the same reaction as me... waves of sleepiness, different than typical POTS symptoms. My primary doc (the one who suggested I take the Vit D) of course had never heard of this. She even called around to some endocrinologists who also had not heard of this side effect. I'm trying to figure out what it is that's causing this intolerance. On the one hand, I won't take the D because of it, but on the other hand, I know I really NEED it to feel better. My last level was 17, so I'm guessing that bringing that up would help me somewhat.

I also ran this by my neuro, who hadn't heard of it either.

[sue1234]

I don't react well to prescription vit. D at all, even though "sleepiness" is not one of my main reactions. I know my insomnia worsens when i take it.

If you read some stories of people with hyperparathyroidism, alot of them talk about how tired they were. Also, if you look up hypercalcemia(which high doses of vit D can cause), one of the symptoms if lethargy.

It might just be a symptom you have to put up with until you get your levels up, or it might be that you need to have your calcium levels checked while in the throes of your symptoms.

[handmadebyemy]

my endocrynologist found that my vitamin d levels were low and recommended taking 2000-3000 IU daily which i did and i didn't notice any (extra) sleepiness. I took the recommended dose and my levels were up to normal within 6 months. maybe try taking a lower dose? i've heard thats why being in the sun all day (like at the beach) makes you drowsy - too much vitamin d. maybe they're related?

[issie]

Look at the other thread on Vitamin D deficiency on this site. It gives you allot to think about.

[Maxine]

I have adverse reactions to it, and of course not one doc I have seen so far has heard of this either. My levels have been as low as 3-------but now they are up to 12. this is still extremely low, but The last time I took a liquid dose of it I got dizzy, faint, and my heart starting having palpitations, and then started pounding. When this happened we were at costco, and we had to leave. I was in such a panic, then it stopped-------I wanted to go back to costco.

I have tried prescription vitamin D several times, and the reactions before this have been a chronic fatigue----flu like symptoms. I know I need it badly, and I don't know what i'm going to do. I'm in the process of trying to contact my endocrinologist now. I have had bllod work done, and my catecholamines are really low too, but normal can start at -0- from what I'm told. I have no idea what normal limits are put I posted the results on an earlier post.

I don't feel good at all lately, and had a horrible night of pain Monday night. I went to the dentist thinking it was my upper left molar, but he did an x-ray and roots look fine, but he did notice some bone wasting in the pocket between the back and mid molar. The mid molar is crowned. It hurt all the way into my neck, jaw, head and shoulder. I told the dentist about my neck instability, and he said the pain can spread to my jaw & teeth from my neck. My neck is really bad, and I'm assuming being so low in vitamin D can't help. However, when I had my bone density test done at the EDS study at NIH it was in the normal range except for a little osteopenia in my hips---(surprise, surprise)-----basically still normal.......

Thankfully my bone density is OK considering my connective tissue is making me fall apart.

Maxine :0)

[issie]

I have EDS too. I also have pain in my jaws, like TMJ issues. In fact, I went through adult orthodontics because I couldn't lie on my face because of the jaw joints. That in itself wasn't fun because with EDS you start moving your teeth and then they really move. I will have to wear the retainer for life now. But, it did help. I've also lost bone mass in my jaws and have osteopenia. I think this is a part of EDS. We have pain all over our bodies. My doc. told me that we are always in a state of tension, because we're trying to hold ourselves together. It feels like a really bad arthritis all over. I have osteoarthritis too. It is part of the EDS. I have allot of blood pooling in my legs and abs. and HAVE to wear full body compression daily. It helps hold you together too. It may help!! Hope you feel better.

It may be that you are allergic to whatever the vitamin D is in. If it's in an oil state --fish, vegtable - soy --you may be reacting to that. Try a different brand. Some people can't use gelatin caps, etc.

[Sophia3]

Wow. levels of THREE??? I was told my level of 27 was enough to add to my joint pain isssues by a rheumatologist. But I find I have digestion issues of stomach ache, gas when i try to take these needed "supplements".

Sure sitting in the sun is fine if it's not MUGGIE out but what about winter in Ohio when you don't see the sun for SIX MONTHS..and can't even cast a shadow on the ground which means NO Vita D is getting thru. It's maddening.

I am the same way with calcium supplements. Carbonate version is &^%$* and basically chalk. and the Citrate causes issues like Vita D. Odd that we can be LOW on things we need but pill form does NOT work. *sigh*

[Maxine]

Odd enough------The omega 3 codliver oil with vitamin D is the one I tolerated the best believe it or not. However, after taking it a while my blood thinned too much, and I pooled worse ending up with more uncomfortable heart palpitations. It looks like the one time I took that liquid formula of vitamin D in costco I seemed to turn my blood to water instantly. I reacted very badly to that. My levels have been around 6-7 on average since 2005----probably longer. There was the one time I read a level of 3----this was from the blood work at the NIH EDs study----I THINK-----don't quote me on that.

I heard this can add to my pain. My pain levels have actually been higher lately, and my vitamin D levels went up to 12. I know this is still bad----I'll see the endocrinologist on Friday. Hopefully he can tell me why I feel like I need to be scraped up by a spatula off the ground lately.

Maxine :0)

[Birdlady]

I gotta ask if you've ever had your parathyroid checked. I mentioned this in the other thread but am not sure if you saw it?

[kitchmill]

I was taking a liquid form of Vitamin D because I thought that was absorbed best, but maybe I'll try it in another form. The codliver oil + vitamin D sounds like a good alternative, since I recently started taking fish oil anyway. My doc told me that my HDL is low so I am trying to also bring that up.

Dana, I was wondering about the parathyroid issues, but I just looked over my lab results and my calcium has always been in a good range. Always right around 9.5, which seems to be smack in the middle.

[lissy]

This is kinda old post but I had a vit-d problem it was 17. I took the 50,000 units once a week 1 TIME and had weird tingling on my tounge and foot and very fast tachy shortness of breath like an extreme panic attack. So I never took it again, I was told it wouldn't get better on its own but it did in my case after a year of just being more active outside in the sun I'm talking 1hr per week and I do drink a good amount of vit-d milk it no longer is low.

So I'm unsure if just not being in the sun can cause this but it was easily fixed

Lissy

[Maxine]

I sure would like to know why we get hese extreme tachy panic feelings on the vitamin D.......What the heck! Why would this happen, I don't understand, if we need it, then why are we having and adverse reaction?

This is so absurd. Lissy, this is exactly what happened to me when I took the liquid form of vitamin D.

Maxine :0)

[issie]

I sure would like to know why we get hese extreme tachy panic feelings on the vitamin D.......What the heck! Why would this happen, I don't understand, if we need it, then why are we having and adverse reaction?

This is so absurd. Lissy, this is exactly what happened to me when I took the liquid form of vitamin D.

Maxine :0)

It might be what the D is in or from what source it is made. You could be having allergy reactions to either of those. The best form is D3. I react to nearly everything and the one I can use is by Now the source is Lanolin in an olive oil base and gelatin cap. So far, so good. I'm on either 6,000 to 10,000 per day. One amount one day and the other about every 3 days. I'm starting to not hurt so bad. I've been doing this amount for about 4 months now. So, it's taken awhile to tell a difference.

Sophie,

I have the same issues with calcium. Finally found one that I'm doing great with. I've increased my bone density with it too. (The D could be helping this too.) It's Osteoprime Forte by integrative therapeutics. I didn't get the plus one because of the ingredients. I'm only taking half of the recommended serving amount, but that's more than I was taking and seem to be tolerating that amount good. I've tried every kind of calcium there is and this is the only one I've felt that I can do with no problems.

[gertie]

My Vit D level was 11 & the dr put me on D3. I didn't realize what it was doing to me until I was so lethargic I could hardly walk. I tried mixing the powder in my food throughout the day I was still lethargic. I took the gel caps and had the same symptoms. The dr did not believe it was the D3. After I found out the D3 is from sheeps wool I realized that might be my problem since I am allergic to lanolin. I do have the same reaction to calcium & magnesium. I've give up trying to figure out my body.

[issie]

My Vit D level was 11 & the dr put me on D3. I didn't realize what it was doing to me until I was so lethargic I could hardly walk. I tried mixing the powder in my food throughout the day I was still lethargic. I took the gel caps and had the same symptoms. The dr did not believe it was the D3. After I found out the D3 is from sheeps wool I realized that might be my problem since I am allergic to lanolin. I do have the same reaction to calcium & magnesium. I've give up trying to figure out my body.

Vitamin D can also come from fish sources as in Cod Liver Oil. There probably are other sources too. That's why we have to educate ourselves. We think a natural supplement should be good for us, but if we're allergic to the source or what's in it -- we're going to react negatively. Read labels and educate yourself on the interactions of meds and supplements -- you could intensify the effects of something if it works on the same things. And, on the flip side, you could need less meds if the supplements are working for you.

At least some of you are getting answers. If your Vit D levels are low, it is IMPERIATIVE that you get the levels up. You can do this by lying in the sun, but you're not supposed to wash your skin with soap for 2 days there after (according to Dr. Mercola's web site) or you wash away the oils that cause the vit. D to create in your body before they go into your blood stream. So, no benefit. He used to not recommend supplements but to lie in the sun. It is the UVA rays that you need. We put all the sun screen on and then our body doesn't make the vit. D we need. But, now since he has realized that it takes up to 2 days for the conversion to take place, he now recommends supplement form. If we don't have enough Vit. D we get all kinds of problems, including neuropathies and muscle problems etc. Not to mention the break down of our bones and possible terrible breaks that could come from that.

Hope this helps explain Vit D a little better and why it's so important.

[handmadebyemy]

i know that too much vitamin D makes you sleepy - thats why we get sleepy after a long day at the beach even if we're just laying there. maybe your vitamin d levels aren't low? you can check them with a simple blood test.

[kitchmill]

I did end up trying one other form of Vitamin D and it caused the same symptoms. Now, I'm too nervous to try anything else. I have to work full time, and the side effects make me too scared to drive. I can't keep feeling like that just to experiment with different brands, versions, etc.

[sue1234]

I'm reviving this post as I saw Dixzeland post yesterday about her having hyperparathyroid issues. I read this thread over again and realized something. I posted last week how I was having an unusual two-week long "stupor" episode. I was soooo lethargic and had trouble waking up all morning while up in the living room.

It just dawned on me that a week or two before that I had taken a couple of prescription vit. Ds AND got faithful on taking a week-long jaunt on getting my calcium intake in. I don't usually take calcium as in the past it has bothered my stomach. So, I took it day by day, and my stomach was tolerating it, so before I knew it I had taken it for a week. Then I started getting real tired so quit.(I always quit anything new when I get odd symptoms, so the symptoms can go away).

Thank goodness I had labwork done at the tail end of that episode. IF it has anything to do with calcium levels it ought to show. Yea, I'm still waiting to hear on results.

Any other new/old people have problems taking vitamin D and/or calcium?

[potsyturvy]

My Vitamin D levels were 26 a year ago when I was tested and I started taking a Vitamin D and Calcium Supplement I got from Walmart. A few months ago I was retested by an endocrinologist and my Vitamin D was 17. He prescribed 50,000 IU's of Vit. D 3 times a week for 3 months. I'm still not quite through the three months, but when I first started taking it I felt pretty lousy. It took about a month to notice I was feeling better. Then a few weeks ago I started having hundreds of palps a day and went to the dr to see if it was high calcium from the vitamin D, but my Vit. D level was 66 (yay!) and my calcium was 10.2 so they said that wasn't the problem. I'm still curious about hyperparathyroidism though, even though my calcium levels are technically normal. When I had my parathyroid tested though, my parathyroid hormone was a 14. Not sure if that's normal or not.