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Vitamin D

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    Chiming in on what I believe is a good thread to keep going.

    I cannot remember what I was the first time my levels were checked but then in desperation I started following a wacky diet and was told to get off ALL supplements (we sometimes do stupid things when desperate!). I felt worse and worse but didn't know why. I thought maybe I had to feel worse before feeling better?! Not that I normally feel good
    Several months later I was checked and at 30! I promptly stopped the wacky diet (RBTI for those interested ... supposedly aimed at properly remineralizing your body) and began taking 10,000iu daily (Garden of Life Vitamin Code raw d3). I was checked a year later and at 70, so I began taking 5,000 3 days a week and 10,000 4 days a week. The next time I was checked it was at 63. I'd rather be at the high end, so I've went back to 10,000 daily.
    That's my experience so far.

    Not officially diagnosed due to non-MS-specific spots on MRIs, but the neurologists all agree it's MS.
    Frustrated. January 2019: finally saw an MS specialist worth seeing. Maybe we'll get to the bottom of this.
    EDSS of 5.5, sometimes 6.0


      Hi Guys hope everyone is feeling good, my latest blood test came back with my vitamin D in the normal range i take a supplement can't remember what dose, just a quick question are we aiming for a normal vitamin D test result or above normal thanks Guys have a great day Craig


        Hi everyone,
        I want to chime in, again, with my 2 cents about vitamin D. I am not a doctor. I have been quizzing my PCP on this subject for several years ! My PCP is a Penn Medicine doctor. That means that she was trained and treats patients with the Hospital of the University of Pennsylvania as her support resource.
        The vitamin D scale that they use is 25ml/ng at the low end and 50ml/ng? on the top end. I am not sure of the top end number. I have been tested regularly for several years and I am currently at around 50ml/ng. I am currently taking 1 X 5000iu vitamin D3, daily. My PCP told me, about a year ago, that I could drop the dosage to 1 X 2000iu daily. I ignored that advice ! I tried that dosage, several years ago, and my levels dropped to under 20 ! I refuse to do that again! Besides, my PCP never treated anyone with a vitamin D overdose!
        So the upshot to my story is research this vitamin D issue ever way that you can ! Check out the videos on You tube ! Discuss the topic with your PCP . Good luck


          Vit D Range

          My last test report from Quest shows an acceptable range of 30 - 100 ng/ml for 25 OH Total.

          My neuro wanted to get me to the high end of that scale. I have been doing 10,000 units daily for a couple of months to move up from 27. Next blood test in a week. I'll let everybody know.


            Originally posted by dastardly View Post
            are we aiming for a normal vitamin D test result or above normal
            "Normal" is already quite a large range. When most people -- and a lot of medical professionals -- refer to "normal," they're referring to the bottom of the normal range. Anything below the bottom number is deemed too low; anything that reaches the bare minimum of the range is considered to be "normal."

            It's preferable to consider a level to be in the low, middle or high end of the normal range.

            In the US, the units used for the 25-hydroxy vitamin D test are ng/ml. In Australia, the units used are nmol/L. Because the units are different, the number values are also different. The conversion factor is 1 ng/ml = 2.5 nmol/L.

            In the US, the normal range for vitamin D is about 30-80 ng/ml. (Some labs go up to 100 ng/ml.) In Australia, the same normal range is 75-200 nmol/L.

            The consensus for MS is that a person's vitamin D level should be in the middle to higher end of the normal range.

            There was a study done a few years ago in which people with MS whose levels were at least 50 ng/ml had fewer relapses than those whose levels were below 50.

            If you would like to hope for the same results and try for the same vitamin D level, you would attain a minimum vitamin D level of 125 nmol/L.

            If your doctor told you that your vitamin D was "normal," that could mean that it's only 75 nmol/L. For MS, that isn't good enough, so you'll have to get past the idea of "normal." If your physicians are uninformed, they might tell you that 125 nmol/L is too high. It isn't.

            I used to have horrible fatigue until I got my vitamin D level up to 70 ng/ml (175 nmol/L). Now I work a full-time job.

            If you want to take a D3 supplement to raise your levels, the question isn't how much you should take. The question is how much do you need to take to reach and maintain a level of 125 nmol/L. The amount of supplement is different for everyone, so you'll have to have periodic vitamin D tests to know if you're taking enough.


              Thanks Jreagan70.
              I was just looking into the 'Normal' levels for each place cause this thread was showing differences.
              And "Bingo!" you've confirmed the info. Two Different scales of measurement.
              And your spot on .
              Mine was 80 (in Aus) which technically is still in the normal range.
              But I now know it should be 160+ for ms patients.
              So for the last couple months I have up'd the dose I was taking and will get another test done in 3 or 4 months time.

              Everyone needs to be aware of the different levels used in different countries and understand that MS patients should have a higher than 'Normal' level.

              Wonder if levels are different in UK?

              All the best


                I thought there was very good information in this thread and since I'm currently dealing with a new PCP, it was relevant and I thought rather than start a new thread, I'd just revive this one!

                I just got my labs back and my vitamin D blood level (in the US) is 64. I am currently pleased with that number and to maintain it, I have been taking 6000 IU of vitamin D3 daily in the winter months and 4000 IU in the summer months when I am outdoors in the sun more often.

                However, my PCP wants me to reduce my vitamin D intake to 2000 IU daily. I forget what my neuro wants my overall level at, but I know it's on the higher end. I am going to put a call in to him later today and have him answer that question so I can explain to my PCP why I'm taking a higher dosage and not following her recommendations.

                What have levels has your neuro (or PCP) suggested you try to reach or maintain your vitamin D level at?


                  I just had my Vit. D tested in October, and I registered at 80. My neurologist is comfortable with this. She did have me lower my intake when my previous test had me at 120. I need to take 5000 IU everyday to keep it at 80. I would take my neurologist's advice over the PCP.


                    Originally posted by hsmaldo View Post
                    What have levels has your neuro (or PCP) suggested you try to reach or maintain your vitamin D level at?
                    I try to keep my vitamin D level in the upper range of normal and that pleases my neurologist. To maintain this level I take 5000 iud year round.

                    If I have a sprained ankle I would generally listen to my PCP over my neurologist. When it comes to maintaining a healthy vitamin D level I would definitely listen to my neurologist over my PCP. Here's a current article on the link between MS and Vitamin D.



                      I was taking 10,000 2 times a week 5000 5 times a week level at 58 Nero said to increase it to 10,000 4 times and 5000 3 times
                      Nero says anything close to 80 she is happy PCP questioned it at first but goes along with the Nero