I just read an interesting fact while taking a quiz on vitamins and minerals which was presented on WebMD. Too much Vitamin D can cause weakness, irregular heart rate, and confusion. I have been taking 5,000 iu per day for 2 years as my neurologist directed me to do. I also have been experiencing all three of the above symptoms frequently. Is there a correlation? I do not know, but I do know that I am going to skip the vitamin D for a week and see if these symptoms ease off at all. Sometimes I really wonder about attempts to overcorrect our illness. The latest push seems to be massive doses of biotin which can only be purchased at compounding pharmacies and which also is not covered by insurance. Any thoughts on these issues? I appreciate your input. Thank you.
Excess Vitamin D: I just read an... - My MSAA Community
Excess Vitamin D
While i agree that taking too much will cause Vitamin D toxicity, but what I've read is that if you take apx 40,000iu daily that this can cause the problems. I would get a blood test to check your level to be on the safe side. I know that low vit d will cause similar issues. Weakness, frequent urination and kidney problems also may occur with Vitamin D toxicity. This is just my opinion and the research that I've done on this issue.
Royjr 's recommendation certainly seems to be the most prudent path as it relates to D toxicity-- only blood tests can really answer the question of whether your D levels are too high, too low, or "just right" (as Goldilocks would say).
At my Dx last year, my neurologist noted that the whole Biotin-compounding gig was really the only game then in town for PPMS folks like me. He thus encouraged me to try it, but I was never was able to do so.
I would be interested to know if anyone has tried Biotin and thereafter noticed levels of improvement which warranted the cost, etc.
Thanks for asking this really good question, Vlbrown57 .
Christopher
I honestly feel that any vitamins should be discussed with your PCP/ Neuro. Meds like to interact sometimes and not in a good way. It was my neurologist that put me on Vit. Diu 5000 actually 4000 now cause the 5000 was sold out 😅
🌠
The Consortium of Multiple Sclerosis Centers has confirmed that doses of 50,000 IU of D weekly are safe for most people with MS. A recent dose study on D was done and the outcome of that was that it was safe for most people to take up to 10,000 IU daily. One thing you did not mention in side effects is that higher doses of D supplementation can lead to an increase in kidney and gall stone formation in those who may be prone to these. It is really important to have D levels checked at least annually if you are supplementing. I did not notice any increase in my low levels until I started on the 5,000 IU daily and once I hit that dosing level my levels went from 22 to 76 within 6 months and have stayed there since.
As far as Biotin is concerned, I personally have not tried it. My neuro says it takes 8 months to a year for most people to see improvement while on it. That is a long time to be paying that high a cost for something that may or may not show any improvement in quality of life or course of disease.
Your mention of kidney and gall stone formation from higher dose vit D3 is new information for me. Thank you for this newest side effect. I have developed gout in my big toe, pointing finger and knee. Uric acid comes from our kidneys so there may be a link here. I am the most sensitive person to any and all meds. At present, I am not taking any disease modifying meds due to side effects. I too have progressive MS so the new med that should be approved soon may be something I can tolerate. Take care.
Vlbrown57 There have been no studies of which I am aware that connect gout to Vitamin D. The major word of caution here is to monitor how your system is handling a supplement and communicate that with your Health Care team.
Thank you CherieMSCN for sharing that information with us! ☺
As she said, and as Fancy1959 and l tell you,
When changing your *Medications* and *Vitamins* let ALL your Drs know!!!
It's so important!
CherieMSCN Hi! I finaly found you again! You are the one who makes vests, aren't you? i lost your email. I wanted to get the pattern or the actual vest, I forget which one you offered. You are the one with the lap pool, aren't you? You do research for MS for doctors, don't you? It is good I found you again! My neuro advised me to take Vit D so my levels would stay around 50-60, which they are now. I believe I take around 5,000 daily. I also biotin, because it was recommended by the MS diet for Women, which I found very helpful.
Yes, I have made a pattern for both the larger inserts like SteeleVest uses and the smaller inserts like the ones PolarProducts uses. You can actually find both sizes of inserts in most larger pharmacy chains but must buy them individually which is often more costly than ordering a replacement set from one of the companies. My pattern kit gives information to contact them. The beauty of making these vests is that you can choose a fabric that may not look to others like you are wearing a cooling vest but more of a fashion vest and if you like to sew, it is a great way to turn out a very usable item.
I do not have a lap pool but I do have a 7' Jacuzzi that I keep water temperature at between 85 and 90 so I do not get overheated while exercising. I have developed a program that includes stretches and strengthening exercises as well as having an aerobic component to it. I get overheated and start to lose my left side and my vision when I exercise on a mat but can be in the cool water working for 30-45 minutes with no problem even on days that are not so good.
I am co-Chair for the Research Committee for iConquerMS.org which is a patient powered research network. We use our shared data (de-identified) to give researchers ready access to information at a lower cost and less time than it would take to recruit volunteers and collect that data from them.
CherieMSCN I have the inserts for the Polar Products so I would to to order the pattern for that size, so I could make it in a pale blue or something other than the material that they use. I could go for a walk on a warm day with my husband! Let me know how to contact you.
PolarProducts now makes a light blue and a light pink "fashion vest" that is quite nice. The patterns are $20 each with photos and instructions and I donate $5 of that to the charity of your choice. PM me with address. I believe I already sent you my contact information when you first came on this forum.
CherieMSCN for what I remember their vests are rather expensive. I did find your contact information (shocking that I found something!) Thank you!!
About $140. But they can be part of the MS Foundation's Cooling program when you apply. Application should be in the winter issue of MSFOCUS and the program goes from February to June.
Hi Vlbrown57 ,
From my experience, skipping your vitamin d dosage for a week is not likely to tell you anything. It takes much longer than a week for vitamin d supplements to have an affect on your blood levels in a positive sense so it seems that it would also take more than a week to see other differences.
My first check of my vitamin d levels showed I was deficient and it took a couple of years of trying different dosages to finally get it to reach the level my neuro wanted. It was slow going. When I don't regularly take 8000 iu's a day, my levels start to drop within a few months. That's just how it works with my body. Your situation may be very different.
Also, you might consider comparing info you find on webmd against more reputable sources which have more of a focus on the MS population.
I just watched part of a video which suggested that MS patients may not handle or absorb Vit D as efficiently as most people. As everyone else suggested, we can really only obtain a correct dosage by testing our blood levels. I was shocked to learn how low my Vit D level was when tested a couple of years before I had any major symptoms of MS. It is now at a normal level with supplementation. It does make one wonder if MS could have been delayed or averted by adequate Vit D throughout our lives. I'm so grateful for all the research.
Hi greaterexp ,
I've read similar info. My experience with trying to raise my vitamin d levels and keep them up sure seems to support the idea that my body doesn't handle vitamin d properly. What I wonder is, did MS cause my inability to properly process/manufacture vitamin d or did my vitamin d deficit play a role in aquiring MS.
I think that may be what researchers are trying to figure out; it may be the 6 million dollar question of the year.
Because D is stored in our fat cells and is not excreted from our bodies like other vitamins, it may take a few months off the dose (or on a new dose) before you notice an impact on how you feel or your lab work changes. I did find that some formulations of D upset my stomach. What I personally am able to tolerate is Nature's Bounty liquigels of D. You can get them pretty much at any chain drugstore like CVS, Walgreen's and more.
Get level vit d checked
Maintain b/w 50-60 by mouth 70 ng/dl, often w/ 5000iu/d but u may need more or less to maintain level
Recommendations re. Biotin are per NMSS wait for study final results but looks promising. Caution quality, purity biotin compounded. Caution drug interactions with biotin. Ex. I am aware It interferes with thyroid lab tests and with Tegretol
Those I have heard that are using large compounded doses, no benefits, no side effects except cost
Your Dr should periodically check your levels for MS purposes alone - easy way to keep a handle on the toxicity fear.
Vitamin D3
newly diagnosed
Ocrevus starter
