Vitamin D3 and MS?

What is the latest on Vit D3 supplimentation for MS? I've read a lot about this. I don't think I had a deficiency ever, but I don't know for sure. I started taking D when I read about how it could benefit MS. I don't go out much and where I live we don't get sun all the time even if I did spend time outside.. Apparently I have two suppliments including my calcium ones plus the Vit D3 capsules that add up to 7600 IU's per day. That is pretty high I guess, but I have read that under 10,000 IU/day is not toxic. My recent test came back 104 ng/ml which is a bit over the 60-80 recommended level. So I'm off all those suppliments until I get retested in over a week. My internist is worried I was too close to toxic levels. Not sure I agree, but having a baseline when off it will be helpful to know. What has anyone else been told about this? What are some of you MS patients taking if you do take Vit D3? If you were tested for Vit. D levels, were they high? or low?

41 Replies

  • I take 5000iu a day at my neurologist recommendation. My levels were not low by American standards but low for European standards. There is controversy about the standards. My neurologist agrees with the higher. I have found that is helpsy spasticity tremendously.

  • After I get these new test results, having come off Ca and D, I may talk to my neurologist to see what he thinks, although I really don't have a great feeling for what he may say.I am guessing he is probably establishment oriented, but maybe I'l wrong. At least D3 and Ca are OTC so I will probably cut down some but I may not totally cut down a lot, depending on the test results.

  • I take a total of 3000iu a day(daily vitamin and 2000iu supplement) and that is high, but I have a D deficiency. At this level, I have been doing better than before i started. It has helped with how often I get fatigued and how well I sleep

  • @itasara, a few years ago my vitamin D level was low, and my PCP recommended 5,000IU daily. I'm still taking that dose--some of it as vitamin D3 pills, some of it in calcium-supplement chews and a multivitamin. I keep an eye on the studies as they come along, and lately they've been saying that as of now there's no evidence that vitamin D3 supplementation helps MS symptoms but they're fairly sure that it helps to prevent MS. I'm going to keep on taking it as I can't see that it's doing any harm and I like to think that I've been feeling better since I started taking it.

  • itasara l suffer from depression and 2 yrs ago,before they figured out l had ms, l went into a major sick/depression state. Looking back it was probably a MS symtem. But my Dr put me on D 4000 less in the summer. My nero said to stay on the 4000 all the time now. I'm not sure if they have cked my levels yet.

  • I take 5,000 a day and 3 days a week I take 10,000 as recommended by my neurologist and have my blood tested every 6 months and my vitamin D levels are in the higher level of good.

  • Curious what your Vit. D levels are if you have them and don't mind letting me know.

  • I am not sure what they are but I think she said that any where between 50 and 60 were good but she wanted me to have around 65. I hope this helps.

  • 5000iu vit d3/day levels 57

  • I take vit D3 that I have my dr prescribe to me because the store bands vary in strength. Before having my relapse I was taking vit D but my general dr told me my levels were to high close to toxic and I had to cut back. 2 months later I'm having an episode. Mind you I hadn't had one since being diagnosed in 2013. (I no longer have that dr). My neurologist told me anyone with MS will always need to have high vit D levels. To date I take Vit D3 2,000 once a day and calcium 600mg+ D3 400 IU

  • I take 6000iu daily. This is what my neuro has recommended for several years now. I'm very heat sensitive, so getting my vitamin D naturally isn't usually possible. I use wheelchair and have osteoporosis so my gynecologist also follows my calcium and vitamin D. Since I've been on the high dose regimen for years, I can't really credit the vitamin with any specific mobility improvement.

  • Hi. I'm momjules and I take vitamin d every day. I have ms and diabetes and a massive heart attack which left some heart failure. Vitamin d is also recommended for the heart as well. I have read only good things about it.

  • Hi Itasara, just a brief comment about Vitamin D. I've been told by 2 neurologists to not take more than 4000 iu. Also, we've attended several educational seminars these last few years and Vit D has often been discussed. I've heard that we should not take more than 5 iu.

    Don't know what is right answer? ??

    Sending you sunshine from beautiful San Diego area. Truly a joy to live here.

  • itasara, it's Fancy1959 welcoming you to this wonderful chat room. I have been to a dozen or more educational seminar that the pharmaceutical companies put on. Every single one I've been to has told MYERS to use Vitae in December. I'm currently on vitamin D3 like you stated you are and I take 4000 I use per day. I am not certain what my D3 levels are. I have to admit I have not kept up on the current levels recommended by the latest research on MS and effect vitamin D places upon it. I'm sorry I couldn't be more help but it was nice talking to you. You came to the right place to ask your question about vitamin D. Someone or someones in this wonderful chat room I'm sure we'll be able to fill you in on some of the latest levels and research done on vitamin D and MS. I'll be reading up an following up on your vitamin D level questions so that I can become informed. Take care and I look forward to everybody's response so I can become educated on vitamin D levels! Remember together we are stronger!

  • Getting in late on the discussion. I can't promote vitamin D too much. In 2011, I was taking the maximum dose of Baclofen for spasticity and neededmonthly infusions of Solumedrol to control spasticity and pain. I started seeing a new neurologist and the vitamin D level was below the normal range. Within 3 months of starting vitamin D supplementation, 50,000 IU/week for 4 months and then 5,000 IU/day, I no longer needed the Solumedrol and my Baclofen dose was half at 40 mg/day. It's been 5 years now and I take 6,000 IU/day and my Vitamin D level was in the upper normal range two months ago. There has been no disease progression. I have no evidence of active disease with unchanged MRI's. I have not regained any lost ability; still use a power wheelchair. But I take no DMTs and still work full time and take care of a house and children. All this I attribute to Vitamin D. I also try not to dwell on my life, should my vitamin D level have been higher 25 years ago.

  • I may be crazy but since I've been taking the vitamin D I feel like it's keeping the symptoms on the other side of the wall. Maybe a strange way to explain it but it's how I feel.

  • i dont know about you but im leaning more toward cannabis and hemp treatments everyday i dont get high i choose a very high cbd strain that blocks pain

  • What state are you in? Do you need a 'prescription' to get it? I'm very interested in something that helps me but doesn't get me high!

    Anne :-)

  • and the reason alot of m.s. patients need vitamin d is because alot of us are not getting proper sunlight due to our staying indoors mostly and staying out of the heat

  • I'm in western NY the winters here lately have been brutal. There was no going outside at all. No snow just below freezing. And lm a sun worshiper, but with this now (sigh) took care of that. 10 mins outside is not enough vit D

  • I have been on extremely high doses of vitamin D3 for years. Way back in 1998 I was was having a lot of MS symptoms and one othe things my doc checked was my vitamin D levels. She ran 3 different types of vitamin D tests and 2 came back well below normal and super dangerously low. The third came back below normal but not just dangerously low. She immediately put me on 50,000 IU's per day. I was on that for 14 years before my levels reached the mid range of normal. By that time I had moved to another state and my doctors felt I was taking too much and should cut down. So they put me on 50,000 IU per week. Once again, my symptoms came back and my vitamin D levels plummeted to near dangerously low levels. I took it upon myself to up my dosage because the doc still didn't want me to up it. He thought I should just come in for monthly infusions. I am still tring to find the perfect balance for me on Vitamin D3. I have been taking 50,000 IU's 4 days per week and 5,000 IU's the other 3 days. But my symptoms are starting to get worse and my Vitamin D levels have started dropping again so I started this week with 50,000 IU's 5 days a week and 5,000 IU's 2 days a week. I need to keep my vitamin D levels in the mid to upper range to keepthe worst of my MS symptoms in check. By the way, my doctors have all decided that my body doesnot metabolize Vitamin D. On vitamin D3 you just have to find what works for you. Levels are 0-12 ng/ml Very low; 13-29 - low; 30-80 ng/ml. - normal; 101 - 150 ng/ml - high normal; 151 + ng/ml - may be Toxic. My body does best in the 75 - 95 ng/ml range. My last test I was 54 ng/ml. which is normally considered adequate for a normal weight, healthy adult. That does not describe me.

  • The doctors often go my the esblished norms but everyone is different and MS is also different for everyone. My doc wants me, he just wrote, to be between 40 and 60 ng/ml. I told him I thought that was too low for an MS goal and that I disagreed with those levels for an MS patient, especially. Granted mine was a little high at 104, but not outrageous. Anyway, I'm off all D3 and calcium til next week or so when I retest and see where I am off the Vit. D and Ca all together. So far I don't see that coming of D3 has changed much for me although sometimes it is hard to know for sure it my case.

  • I am particularly interested in what one is taking if they are not below normal. I do think from what I have read that Vit D3 does help in keeping myelin in check but that is still all in the research phase I think. Maybe I'm doing well because of taking a lot of D3 and possibly because of my HRT both of whish are controversial. I'm not sure anyone knows what MS patients should take and what one should not take, but again, everyone is different and maybe the establishment doctors don't want to go "out of the box." True taking too much Vit D and even Calcium can be a problem. My internest wrote me, "anything higher (than 30-60-normals for where he works at the university) runs the risk of other side effects with calcium deposition etc." so I can understand his and probably other physicians' concerns.

    I think it is all pretty controversial but in his position and I'll assume my neurologist will feel the same (but who knows? I'll find out next month.)

  • It's interesting but it seems to be an individual problem as to how one metabolizes or doesn't metabolize vitamin D. The fact that you seem so much better on higher doses does say something. I wasn't having a problem at all and my level of 104 didn't seem all that high to me as it did to my doctor. I'm not sure I'm feeling as well as I did when I was taking it. But I said I would lower it for a while and I'm taking 800 a day in my calcium pill now and I'll wait a few weeks. He wants me to stay that way until I get tested in six months. But if I don't feel well I think I will update it least very small amount.

  • Correction, apparently the level recommended by my PCP is 40-60 which is why he is concerned my 104 level is so high, but that doesn't necessarily resonate with other sources I have read about.

  • itasara seems the neurologists and primary can't agree on this subject for me. My primary said he can't prescribe vit D unless below 20 and my count is 23. Neurologist said anyone with MS should have a level of at least 50 and get primary to write script! Crazy! I take 5,000 IU daily from Puritan Pride where I get all my supplements. I have an appointment with a new neurologist Dec. 1st, so maybe he will write script since I have been taking supplement of 3,000 IU for years, but my level was only 23 last CBC. My primary said put 4 neurologists in a room and they will 4 different opinions! Thanks a lot!

  • HECK! Put twenty neurologists in a room and you'll get 20 - or more - opinions! LOL!!! :-) :-) :-)

  • That seems to be the truth! No one seems to agree on anything these days.

  • 23 is kind of low by most of what I've read especially if you have been taking vitamin D all this time. I guess a lot depends on how you feel generally and how much sun you get on a regular basis. Apparently from what I have read is that son is a much better source than food is. One doesn't always get enough vitamin D food. Even fortified milk and I don't drink milk will not give one a daily amount D that one needs. I would assume most doctors would not be concerned unless you have symptoms of toxicity. I did not and yet my doctor was very concerned when he saw my level was so high by the standards he goes by. on the other hand all depends on who you talk to or what you read.

  • Apparently also there are different paths with different results. I read some article the other day that showed a chart where they took subjects over A number of years and tested them with each different kinds of vitamin D tests and the results were quite varied.

  • Seems like everyone has different answers and dosages. I had blood work done last month l should see what my levels are. Usally they just call me if something isn't right.

  • your levels are probably fine but it never hurts to really know what they are andwhat the parameters are where you live. I find out mine because my doctors are part of an electronic system and it's all posted electronically including appointments and comments from the doctor and that's also basically these days how Icommunicate with my doctors.

  • My dr has had me on D3 forever, 50,000 units per week, plus foods high in it.

  • Do you know if your D blood levels were low? Why else would he put you on such a high amount of D3?

  • Sulke, I wouldn't think he would put you on that dose unless your blood levels were high. One doesn't put somebody on something like that forever unless he/she tests your D levels on a regular basis. If it were me I would ask him why he does and what he bases it on. You are the patient and you have a right to know why and what you are prescribed. Even so vitamin D is not harmful for most and there is something called vitamin D toxicity if taken too much or if your body cannot handle it which can occur by taking too much vitamin D. According to some information the best way to get enough vitamin D is from Sunshine and not so much from food. I know I don't get out in the sun very often and that's one reason in northern climates and in the winter seasons why vitamin D supplementation is most likelygood thing but how much is the question.

  • I'm only on 1,000 IU of D3 a day and my levels have never been checked, as far as I know! Maybe it's time to request it!

  • I never did call to find out my levels Ashirva l forgot and l blame MS HA! :D

  • Well I'm not sure one can blame MS on everything. To get or not to get vitamin D levels checked is more than confusing. I think it's a good idea in general but not everyone does I asked my internist to check mine otherwise I wouldn't have known but now that I did ask to have it checked he says I'm taking way too much. I don't know how correct these generalrecommendations are; I've read many different articles and differing opinions. On the other hand I get these newsletters from Blue Cross Blue Shield and the last one said that says most people don't need to have Vitamin D tested and they don't recommend having it tested. But do I trust what the insurance company says? Not particularly. The article didn't mention anything about MS either. Several years ago I asked my internist how many of his patients have low vitamin D and he said a lot. It all seems rather speculative to me.

  • My neuro told me to stay on the vit D. And up it 1000 in the winter. Since l definitely can't get outside much. Ugh l hate winter, it so depresses me.

    What l do know is when l run out and forget to get more, after a few days l start to lose that "happy" ? Feeling like something isn't right.

  • 😱😜😂😂😂

  • You might find this study results from a research committee I forget what all the letters stand for but it answers (though maybe not conclusively )a lot of the questions that we have a brought up here on this board:

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