My new neuro, who is a well-regarded in the community, says my vitamin D is so low that he wants me to take a prescription pill of 50,000 units of vitamin D twice a week for 8 weeks, then to stop that and start taking 4,000 units a day. Has anyone here taken that much vitamin D? He assures me it will not damage my liver (I asked).
Quix, Lulu, MSers/Limbolanders: What is your opinion/experience with this? Please let me hear from you ASAP!
I have heard of doses that high in patients who are severely deficient. I also came across a Canadian study recently that had subjects taking doses that high, I'll post the link if I can find it again.
I've taken as much as 10,000iu daily when my D level was found to be deficient. I'm now in the normal range with my level last measured at 100 nmol something or other (80 - 200 was the normal reference range. I'd like to get it closer to the upper limit where it may have greater therapeutic effect).
If you're concerned about impact on your liver, have blood work done to check AST, ALT etc berfore starting to get a baseline, then have it checked every week or two during the 8 week high dose period.
I meant to add that once I was back in the normal range, I reduced my daily intake to 6,000iu daily and have been holding at that for a while now.
I have my liver function tested a couple of times per year, not just because of vit D supplementation but because of all of the meds and supplements that I shovel into my body on a regular basis since my MS dx.
I took 50,000 units weekly for 12 weeks starting last spring and have taken 4.000 units of D3 every day since. I do divide it into a morning and evening dose each day. No problems that I know of. I am getting a limited chemistry panel run every two weeks right now. No problems with the liver enzymes.
Thanks so much for the rapid responses!! I hear you and feel better about this!!
That's a great idea, doublevision1, about testing my ALT/AST every week or two to keep tabs on how I'm doing!! That way I'll know for sure!!
HVAC, with all due respect to your specialist, one reason I was concerned is that vitamin D is a fat-soluble vitamin that can be stored in excess!! Not sure it actually is eliminated (as are water-soluble vitamins like C) if you take too much. That is what they used to believe about D anyway, maybe they now know differently and I'm out of the loop.
Twopack, so you took 50,000 weekly (but he wants me to take TWICE that amount). Hmmm. You took yours for 12 weeks and he wants me to take mine for 8 weeks. Maybe I could make a deal with him for me to take less (only once a week) over a longer period of time.
Until lately, I had never been aware of the cancer-fighting qualities of vitamin D, especially regarding colon cancer (my mom had colon cancer - yipes!! - with my family history, I can't afford to be low on D).
When I showed my rheumy the very visible bones protruding abnormally from my forearms, I jokingly asked him if it could be rickets - with my low vitamin D level, now it sounds like it really could be!! Live and learn!!
The latest research supports the idea that therapeutic levels of D supplementation not only place a role in prevention of some cancers, but autoimmune disease like lupus, in addition to MS.
There are also studies looking at whether high D supplementation has a therapeutic effect in MS for alleviating symptoms, reducing severity and frequency of flares in RRMS, etc. The ones I've come across in the literature were/are pretty small studies all stating that positive results shown thus far would need to be replicated in larger studies to be considered valid and reliable.
It's all very promising I think, and if there's no down side (keep an eye on liver function), why not take this cheap little pill as some possible insurance for your health.
BTW I understand calcium supplementation should go hand in hand with D3 supplementation. I take 1000mg calcium with my 6000 D3 daily.
If you're doing labs to check on liver function regularly, throw in calcium and D testing too, to ensure you're not getting too high in one or the other and that they remain in appropriate balance.
Hey thanks so much, Phyllis, for that website!!! Who knew there could be a website so specialized - a site for recovering from vitamin D deficiency???
What were some of the symptoms you had that caused you to quit the high-dose vitamin D replacement?
I worry because I have trouble tolerating a lot of things that others can tolerate with ease. We older folke are more sensitive to meds and need dosing adjustments (which the MDs often overlook and do not make).
For instance, I recently tried taking melatonin 3 mg (which most people can tolerate) at bedtime hoping for a good night's sleep. What happened next was the scariest drug reaction I'd ever had: My eyes started jerking from side to side rapidly - I could not control them - and then my brain began to feel like it was caving in - really scary!! This went on for a while until I got to sleep. I'd never take that again!
I'm glad you've discovered us and our leader, Bisan, is very well informed. On the Forum site you'll find an older posting in which many of us list problems we had tolerating high doses of vitamin D. I had about 5 of the AEs listed on the package insert including: heart palpitations, nausea, diarrhea, frequent urination, joint/muscle aches (worsening my back problem). Other older friends of mine also report intolerance typically muscle aches, particularly in the shoulders) and frequent urination. I should add here that I'm being worked up for an endocrine disorder (however, thus far my labs have been normal but I do have tiny benign colloid nodules on my thyroid) so the d might simply have exacerbated the symptoms of an underlying problem.
Yes, I think that as we age it becomes difficult to metabolize drugs, vitamins etc probably a reason D and B12 deficiencies increase in people over 50.
Don't freak out JemmAus. No, the recommended amount or even higher (I now take 3400 IUs daily D3 gel caps) does not cause vile symptoms. My symptoms of intolerance were associated with high dose (50,000 IUs twice weakly) prescription vitamin D2; I had the symptoms of D intolerance listed on the package insert. You should visit the Recovery from Vitamin D Forum if you're concerned -- you will learn that D3 in gel caps is the most bioavailable form of the vitamin and should be taken with a fat (piece of cheese/olive oil) and/or with the largest meal of the day to be most effective. You should be fine with the recommended amount (or even higher if you dare). Also, bear in mind, that I'm 61 years old and, therefore, could have had problems metabolizing d through liver/kidneys for age related reasons. Most people, even elderly people, do fine on the megadoses -- I didn't, that's me.
I'm a bit confused about this vitamin D info. When I last had my bloods done (May) then my vitamin D level was 12. My neuro said that I should take 1000-2000 iu per day as a vitamin supplement, but that's nowhere near the 50,000 twice a week being suggested here.
Could you tell me whether I need to be pushing for a stronger dose here? It wasn't something I'd really thought about.
Vitamin D has a growing role in many disease states including MS. A little medical history is needed to understand that widely varying opinions we get from our doctors. For a LONG time Vit D was considered important only in its role in bone growth and bone health. The Minimum Daily Requirement was formulated ONLY with respect to prevent bone disease like ricketts. So the 100 or 200 IU requirement was respected as gospel.
Vit D is fat - soluable and because of that doctors and nutritionists were taught to treat it with great respect to avoid toxicity. Now, toxicity has been seen, but it's really quite rare.
A few years ago the research that uncovered Vitamin D's more important role took center stage in the discussion of MS, some autoimmune diseases, some cancers and other diseases involving the immune-system. Vit D and its cousins (metabolites) are crucial players in the health of the immune system.
I'm not going into the specifics here. Jump to realizing that almost all sufferers of MS are Vitamin D - deficient. Also, we can look back to all of the research that has shown without a doubt that
MS occurs in higher numbers the farther away you get from the equator.
MS occurs more often in people born at the end of the winter than people born in the fall.
People who move to a higher latitude at an age less than 15 have a higher rate of MS than people who stay at the lower lattitude.
MS exacerbations are more common in the spring and summer.
For a long time no one thought to look at Vitamin D as the culprit, but it is pretty clear that a low Vitamin D level may be partially responsible for setting a person up to develop MS (and breast cancer, among others).
Historically, the normal Vitamin D level was considered to be around 20. (Note: I will be talking about the US levels. the British and European levels are given in different units of measure.)
With the work that has been done to date the recommended lowest Vit D level is now considered to be greater than 30.
There are some researchers in MS that believe that supplemental Vit D can positively affect MS. And they use some very high doses.
Recently a good scientific study looked at MS patients given 44,000 IU DAILY for several months. (I need to find this study again). They did see a statistically significant reduction in relapses and I believe there was some effect on lesion load. NONE of the people developed symptoms of Vitamin D toxicity.
Current recommendations vary all over the board. Depends on whether your Neuro is a "D Believer" or not. The most common recommendations depend on where your baseline level is. If you are D-deficient, then they tend to use mega-doses either by injection or orally until the level is sufficient. Then the recommendation is to take 2,000 IU daily. Some docs are still shy and worried about toxicity - which has not been a problem in any of all of this, recommmend 1,000 IU.
I have been following the molecular biological research work done on Vit D, like by the Linus Pauling Institute for Micronutrient Research at OHSU. Their work shows that the average person (who has normal kidney function and calcium metabolism) can safely take at least 10,000 IU daily.
Phyllis brings up the problem of not tolerating the higher doses. This is different than toxicity. Its just the side effects of trying to absorb all that Vit D orally.
So, I know I skipped a heck of a lot of research, but otherwise I would be typing until doomsday. I tried to skim the highlights here.
My opinion about 1,000 to 2,000 IU if you are deficient? It's probably too weak an effort to rectify the problem, but it is better than nothing. I think you need to take the higher doses until you get your level well into the 30 range and then settle on about 2,000 IU daily. If you can't tolerate the higher doses then you find the dose you can tolerate and take that. Exposure to the sun without sunscreen should help this.
We have had numerous reports where the person reported a resistance to getting their levels up despite large doses of Vit D. This has led to research on whether MS patients have a genetic problem with Vit D metabolism.
When you are on the higher doses of Vit D you still need to take supplemental calcium, though some say you don't need as much. Certainly you should not take huge doses. this could lead to elevated levels of calcium in the blood. Stick with the recommended 1,000mg per day.
Can I tell you exactly how much to take? No. My level is now in the high 20's and I take 8,000 IU daily and 1000mg of Calcium. My level is slowly coming up.
This was pretty disjointed. I hope it carried some good info.
I was just wondering what other Uk folks experience is of the Vitamin D thing and their neuros as they do no seem to test for this with MS over here. I asked my neuro and he agreed that it was a good thing to take (and particulary to encourage your kids to take) but did not seem to suggest doing blood tests for it..he just said to take a supplement if I want.
Thanks, that's really helpful. I'm going to find out if my GP will test me again for Vit D to see what my current baseline is, and then start upping my dose.
What is the role of calcium? I've noticed that a number of Vit D supplements in the shops come combined with calcium, and I guessed this was because Vit D helps the bones too.
Here in the UK, based on the 3 London MS-ers I've spoken to, Vit D testing seems to be part of the series of bloods they do on initial presentation when they're testing for MS mimics, or for any clue which indicates it could be MS.
I might be way out though - my sample size is a bit small and we could have been the lucky ones.
Thank you both so much for your invaluable info!!! Phyllis, like you I have palpitations often from a variety of different meds, so your comments about having them with your high vitamin D dose are concerning. Quix, thanks again for taking the time to share your vitamin D info!! I printed it out for future reference!!
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