Prescription Strength Vitamin D?

[LMG]

My levels of D have been low all throughout POTS. I have tried D3 in many forms and just don't feel quite right on it. I am wondering if I should just give the prescription my doc gave me for 50,000 1u's of D a try.

Has anyone taken that? Given all our sensitivities it kind of seems like a big hammer to use.

Just wondering....

My other doc says go to a tanning salon, which I know has been discussed at length in other posts.

Don't want to trigger any additional migraines, but then I have read online that high dose D can sometimes help.

Any input or thoughts from you all is welcome!

[Batik]

That's way higher than the amount of Vit D3 that's prescribed in the UK. Who's prescribing it?

My levels of Vit D normalised after being put on prescribed D3, which I think is 400iu daily. How much were you taking before?

[boymommy3]

I had very low levels of Vit. D a couple of years ago when my POTS first came on in a big way. My Endo had me taking 4,000 I.U.'s of just OTC. I felt soooooo much better after taking it for just a couple of days. At that time I thought it was a miracle vitamin!

This go around not to sure though. I have been in a really bad flare up since December. I am going to have my doc check my D levels when I go this week because I haven't been taking my D like I should anyway.

I know several people who have had to take extremely large does of prescription D like your doc had prescribed for you. They did feel much better. They didn't have POTS though.

Obviously, I am not a medical professional so I can't say for sure, but if your doc seems to think it's ok, I'd try it. It really might help. I have been a firm believer in Vit. D since I saw such a turn around a couple of years ago. I have been sad that it hasn't seemed to help as well this time and I am not wondering if I need more.

Have you ever noticed a sensitivity to vitamins before? Do you typically have medication sensitivity? And also, I wonder if there could be an underlying cause maybe making your body not absorb the D like it should. I have heard of that with other vitamins before and once people figured out why they weren't absorbing, they fixed that issue and then the other in turn was fixed.

I don't do tanning beds, so if that were me, I'd just try to get some sunshine without sunscreen if possible. I know depending on where you live that can be an issue. Not much sunshine going around where we are right now.

[targs66]

I am one of the people who can't tolerate vitamin D, although it's not entirely clear to me why. I feel okay for the first few days, maybe even a week, that I'm taking it, and then start feeling unwell and end up feeling awful until I stop taking it, even at very very low doses. That sequence has happened to me at least three different times, each time with different brands/formulations of vitamin D.

I really can't figure out why, but read some very interesting things about hyperparathyroidism and how calcium/vitamin D supplements can be extremely problematic if you are hyperparathyroid (see www.parathyroid.com). Unfortunately, I haven't come up with any answers (yet!) for my own vit. D intolerance, as thus far, there's no indication that I am hyperparathyroid, but it might be worth a look for anyone who finds they're intolerant of vitamin D.

I hope you can find some answers!

[Joann]

I took a weekly dose of 50,000 iu for low vitamin d. It was a prescription and I took for about 8 weeks. This is when I was at my worst. My vitamin D had bounced around from 30 to 17 in a month (and it was spring and I was making a point of going in the sun). After taking for 6-8 weeks they re-tested me and I was at 70. So it worked for me. I am suppose to take a daily vitamin D now to keep it up, but I am having trouble finding one that doesn't bother my stomach. I recently purchased a liquid vitamin d and am going to try that.

When I took the weekly vitamin D I did have some aching muscles. One site said that showed that it was working. I don't know if that is true or not. I actually took it one week and then stopped because I felt so bad, but then I tried it again and it actually got better after the first couple of weeks.

I was also low on B12 and I get a monthly shot. I do feel much better now, I still have the POTs symptoms, but I have more energy, have gained some weight back, and my body is not so sore.

I was also tested and found out I had osteoprosis and I am wondering if that is better now that my vitamin levels are better. I do think that osteoprosis and vitamin levels were caused by whatever is causing my "Pots". I was unable to eat and basically just a mess, while I am still bad, last year at this time, I honestly didn't think I would be here this long.

[AllAboutPeace]

Wow, I am so glad you posted this! I meant to post about it myself, but kept forgetting. Are you able to describe how you feel odd or is it one of those indescribable things?

I started taking D3 (1000iu), two weeks ago. The first day I took it, it didn't go very well. About 20 mins after taking it, I felt "odd" (well super-odd, because everyday feels odd ). I was sitting down and quickly went pre-syncope (almost fell off of my chair), my hr felt sluggish which usually means mid-high 40's. The odd feeling lasted about 40-45 minutes. I've continued to take it, thinking that my body just needed to adapt to it - who knows?? I've continued to feel 'off' and a different kind of fogginess in the back of my head/neck area when I take it, but it's not as extreme as it was the first day.

Yikes, that is a HUGE amount to take if you are not feeling quite right on it !

Targs, thanks for the info.

[targs66]

Thanks, AllAboutPeace -- you've summarized what I couldn't - that weird, "super-off" feeling with the fogginess in your head and neck. I just find myself slumped in a chair feeling mildly nauseous, extremely weak but with a sort of teeth-gritting "buzziness" in my head. Lots of fun.

[Libby]

I had these little electric shocks going down my arms for as long as I could remember. Very uncomfortable, but I had no clue what the problem was. Turns out my vitamin D levels were 3 ng/mL.

I took the 50,000 IU capsules for 1 week, then 10,000 IU capsules daily for a few months after. In 5 months, I was up to 79 ng/mL, which allowed me to back off the supplements. I haven't had any shocks since I took the 50,000 capsules. I'd definitely recommend them.

[jrlehnardt]

I am on a high dose right now. My levels were really low, so my doctor prescribed my 50,000 iu, that he wants me to take once a week for 12 weeks. And after that go to a lower daily dose. I have been on it for 4 weeks now, and I havent noticed much of a difference. But that could be because I was not feeling very well at all due to another medication.

[misstraci]

I was prescribed 50,000iu a few months ago but I never took it because I was scared of having bad side effects. I read about it prior to taking (or not taking in my case) and it was saying diarrhea, stomach cramps, all this terrible stuff ( just like with any supplement or medication) and it said very high dose can calcify your arteries and that freaked me out, i'm sure it would have to be crazy high amounts and the doctor wouldn't prescribe if it could be that harmful but i've just been very reluctant to try. Maybe I/we should give it a try. Looks like it's helped several people. Mine has been low for the past several blood tests. In the 20s, so, borderline low I Think.

[Batik]

It's worth noting that 10,000iu is way above the recommended upper limit for Vitamin D. To quote this source,

In July 2012, the European Food Safety Authority (EFSA) recommended that the European Union raise the Tolerable Upper Limits (UL) for vitamin D in adults and children over 11 to 4,000 IU or 100 micrograms per day²⁶. The Tolerable Upper Limit is a dose that is unlikely to produce toxicity but is also likely to result in an excess intake of the vitamin.

I used to take 400iu daily in prescription form, which also included calcium. I now have more money coming in and have switched to a vegan form of Vitamin D3 (algae or something, I can't remember offhand but it's called Vitashine, and it's definitely D3 rather than D2). I'm taking one supplement which has 200iu daily, and another which has 5,000iu once a week. I am now vaguely considering increasing that, although looking at the recommended limits for Vitamin D is giving me pause. Those limits are higher than they used to be, as well. But then there are some studies using 10,000iu or even 14,000iu, and that's just from that page about Vitamin D in MS. I'd be very wary of taking 50,000iu, though, as that's really, really high. Certainly not one to do without consulting a reliable doctor.

[lejones1]

I was prescribed 50,000iu a few months ago but I never took it because I was scared of having bad side effects. I read about it prior to taking (or not taking in my case) and it was saying diarrhea, stomach cramps, all this terrible stuff ( just like with any supplement or medication) and it said very high dose can calcify your arteries and that freaked me out, i'm sure it would have to be crazy high amounts and the doctor wouldn't prescribe if it could be that harmful but i've just been very reluctant to try. Maybe I/we should give it a try. Looks like it's helped several people. Mine has been low for the past several blood tests. In the 20s, so, borderline low I Think.

misstraci, you might want to try taking 5,000 IU a day instead of the 50,000, if you're worried about it. I also have borderline low vitamin D, I think 24 or 26, and my doctor put me on 5,000 IU a day for 6 months, then we'll retest. He said that he didn't see any reason to give a megadose to people who are barely deficient (it's a very popular thing to do right now, but I'm not sure if it's actually been proven to be better than small, consistent doses) and has had a lot of success with patients on the 5,000 a day dose. I'm very medication sensitive and don't have any reaction to it. You can buy that dose over the counter.

[lejones1]

Also, Batik, the reason these doses probably seem so high to you is because there seems to be a huge push right now in America to raise EVERYONE's vitamin D levels. I have a lot of very healthy friends and family who have been put on 50,000 IU doses for borderline low vitamin D levels (which most Americans have). I know that higher vitamin D levels are correlated with better health and lower disease rates for many different diseases, but I'm not sure that it's actually been proven that intense supplementation in healthy patients has any benefit. I think most doctors just think, hey it's a vitamin, it can't hurt.

[Batik]

The push to get more people on Vitamin D is happening over here in the UK, too. Articles pop up in the press, and they particularly note it for Scotland (where I live) as we're further north, get less sunlight, and have higher rates of MS, SAD and so forth.

I think that's separate from the current fashion for vitamin megadoses. Doctors in the UK aren't putting people on 50,000iu for Vitamin D deficiency, they're putting them on 400iu. Apart from a few private doctors, who tend to be controversial - it's the sort of thing Dr Sarah Myhill would do, for instance, and she's massively controversial.

I agree that a lot of people, including some doctors, think "oh, it's just a vitamin, it can't hurt," especially if it's something you can buy OTC rather than a prescription drug. Some vitamins seem unlikely to do anything if consumed in megadoses, but others can definitely be harmful, and those of us on this forum are a more sensitive bunch than the general public. So it's definitely worth being aware of the current medical recommendations and various opinions on the subject, and doing your research, rather than hearing someone say, "Hey, I've heard that 50,000iu Vitamin D is good," and giving it a try without looking into it further. It doesn't make it any easier that vitamin doses are also highly controversial, that the recommended dosages and recommended limits vary over time and between countries, and that there are a lot of people making a wild variety of claims both for and against.

According to this page. the FDA's recommended upper limit for Vit D is 2,000iu daily for adults. It sounds rather worrying that you know people whose doctors are going against that, and to such an extent.

[Libby]

There's very little risk of overdosing on vitamin D, despite it being a fat soluble vitamin. Relatively, there are very few examples of toxicity in medical literature. And the cases that are brought up involve infants and children 99% of the time.

Federal recommendations are, with few exceptions, on the conservative side. They'd much rather harm, if it's going to come to you, happen from no action (looks like your fault) than from something that they told you to do outright (looks like their fault), imo. Harder to sue them that way.

One study has indicated that 9,600 IU per day for is barely sufficient to maintain a population-wide level of 40 ng/mL, which is at the lower end of what is considered normal (30-80).

But in fairness, there are studies that suggest a much lower dose is adequate, as well.

I have not seen any studies which indicate that rapid restoration of vitamin D levels is inherently better than a slower climb, with lower dosages. The benefits of having your levels in the ideal range have been researched and in many cases supported, but it appears to be just an assumption that you should get them there as fast as possible. An educated guess, with nothing I can really find for/against it. But nothing to suggest that 50,000 IU is dangerous.

http://blog.vitamindcouncil.org/2013/02/26/what-is-the-upper-limit-and-noael-and-are-they-justified/

http://www.ncbi.nlm.nih.gov/pubmed/21378345

http://www.ncbi.nlm.nih.gov/pubmed/22086300

That's not to say that you can't have an adverse reaction to vitamin D supplements. But that's a different matter all together.

[Joann]

I agree with Libby and just wanted to add that it is very common to prescribe mega doses of vitamin D if you are very low. They have changed the recommended levels and most doctors feel that you should be between 50-90, I believe, and for some people the upper limits makes them feel better. My level had been a lower level of 30 and then dropped dramatically to 17. That is why the neurologist had me go to 50,000 weekly for 8 weeks.

I was concerned at the high level and the doctor reassured me that, that amount would not cause me to go over the toxicity level. It may be coincidence but I my body does not ache as badly as it did.

The doctors are not going over a recommended level as someone stated earlier. The recommended level is for people who are not deficient in vitamin D. The doctors prescribe more if your levels are low so you can get to a correct level and then you would return to the recommended daily level. Doctors also have to evaluate each person individually, and some people may need more than others.

I am not saying that this is will cure you of your symptoms, but I also felt like you should know this prescription is not unusual.

[looneymom]

My son had a very low levels of Vitamin D. After his levels came up, his headaches went away. Its worth a try. Calcium helps with absorption

[issie]

I had really low levels and it took me awhile to get my levels up. I have to take 10,000 a day to keep my level at 50 - which is the low end of where most health conscious docs/people want you to be. I do have a genetic mutation on my VDR which explains some of my problems with getting my levels up.

Issie

[alexhunterus]

That is what I took when I was on it and I didn't seem to have any problems on it. They only took me off when my vitamin D levels were back up.

[britishangel6]

In regards to Vit D levels, there are US tolerable upper limits too and some of the dosage listed are way above it. While some people will surely need abnormally high levels, this would be the rarity instead of the norm. Too much Vitamin D can be toxic but I don't know of established parameters for toxicity. The following is a link from the National Institute of Health site with an abstract and notes tolerable daily upper limit as 250 mug (10,000 IU)/d of vitamin D(3).

http://www.ncbi.nlm.nih.gov/pubmed/18290725

Also, FYI: "An excess of vitamin D causes abnormally high levels of calcium in the blood. This can severely damage the bones, soft tissues, and kidneys over time. It is almost always caused by forms of vitamin D that need a doctor's prescription." From NIH and signs of toxicity:

constipation, decreased appetite, dehydration, fatigue, irritability, muscle weakness, vomiting.

[Ash]

A year and a half the first time my vitamin D level had been tested and it came in at 17 with my age and being a female my doctor said that ideally I would be in the 70's so she had me start taking 10,000 IU of D3 that I got OTC for 3 months after 3 mos I retested and my levels didn't budge ( I also tried being outside for 15-30 mins in full sun with no sunscreen each day as well hoping to raise my levels) so I continued on 10,000 IU for 3 more months retested and my levels where 24..So she wanted me to do 10,000 for 2 weeks and then 5,000 IU for a mont and then drop to 2,000 IU for the remaining time till I retested at the end of 3 months, got retested and my level was 11 so I dropped again..so for the last3 months I have been on 5,000 IU (I did2 weeks of 10,000 IU) and am supposed to retest this week to see what my levels are. She did tell me, and did my cardiologist that some people need a higher maintenance dose then others and that newer research is showing 5,000IU to be the ideal limit that most people require (and both doctors take 5,000iu a day) so I am guessing that 5,000iu may be for me what will be required for possibly ever. I do seem to have problems with absorption (is what I am thinking) and I wish my PCP would look into it a little more because last time she checked my Vit D level she checked my B12 and it was 202 so two points from being low however, everything I have read has said that the ideal range is in the 500's.....as far as noticing any side effects from taking Vit D3 I have not had any ill effects and when my level was a little higher I did notic that my joints didn't seem to ache as badly, and that I didn't have as much as the constant headache, but ci am not entirely sure if that was due to Vit D level at the time or I was just having a few better weeks.

[arizona girl]

I was very low as well and was prescribed by my doctor the once a week 50,000 dose which is D2. In the US this is an approved prescription for low D. You can not get it without a doctors involvement. Having said that I saw Dr. Grubb around the same time and he advised that D2 was not absorbed as well as D3 and advised high dose D3. So I didn't fill the script for the high dose D2. Instead, I take the jarrow brand 5,000 d3 once a day. I'm still only in the 40's with that dosing and if I stop taking it I drop again. I also have not noticed any side effects one way or the other.

There are a lot of disease states now being associated with low d, including cancer. So, I do think it is important to get your d up if it is low, it is simple to do and not that pricey. I think the risk of toxicity is low and not getting up your levels puts you at much more risk for serious illness. If you don't tolerate it or have side effects it is easy to just stop taking it.

I live in arizona and who would think my d would be low in the sunshine state. I think I have in an inability to convert my vitamins. Know for sure that is true with folic acid as I am homozygous mthfr, which means I'm missing the enzyme to convert it to the active form the body uses. I now take methylfolate and methylb12 for that issue. All my levels have risen with the right forms supps for me.

[Alex's mumma]

We have tried my POTSie daughter on Vitamin D supplements 3 different times and each time she each time it causes severe Kidney Pain, anyone experience this or have any thoughts about why that would happen? Dr's are at a loss about that side effect or why it would happen.