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Seriously, My Vitamin D Level is What???

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    #1

    Seriously, My Vitamin D Level is What???

    263. Yep, that is what I tested out at. My PCP said she had never in her life seen such a high level and the lab retested it three times.

    I had to supplement for years at 50,000 IUs a week because my Vitamin D level kept bottoming out in the single digits. Last test I was at a 2 and I was taking 50,000 IUs at the time. Highest I had ever been before was 41. So my MS Specialist upped it to just over 100,000 IUs a week. Probably a tad too much, but I feel great and have no symptoms of toxicity.

    My MS specialist has been notified. I am certain he is going to adjust the level. I can't for the life of me figure out what happened. Something turned on my Vitamin D switch. I just started Tysabri, but to go from a 2 to 263 in just 4 months seems absolutely unreal!

    Any thoughts?
    Katie
    "Yep, I have MS, and it does have Me!"
    "My MS is a Journey for One."
    Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri
    Tags: None
    #2
    The best news is that you feel great! Please let us know what your Doc decides with regard to your current Vitamin D dose.
    He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
    Anonymous

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      #3
      The good new is your body is actually absorbing Vitamin D. I'm not sure why, but I am glad that it is and now you can reduce your dosage. I have been on 50k before and it barely made a dent in my level. I'm not on 5000 iu/daily and my levels are basically normal.

      Maybe your neurologist will have an idea ...

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        #4
        I'm on 5,000IU a day. Have been for two months. Alarmingly low Vit D levels back then, perfectly normal now.

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          #5
          Wow!

          Yowza!! 263! I'm thinking you don't have to worry too much about vitamin D deficiency right now.

          When I was first tested about a year ago, it was 19. I started taking a 10,000 capsule a day, and it's gradually climbed from 19 to 36 to 47 to 74. When it hit 74 I thought I could back off the 10,000/day to 6,000/day (one capsule of 2,000 units three times a day), but then it dropped back to 56. So I cranked it back up to 2 pills of 2,000 each, 3 times a day for a total of 16,000 a day. I get tested again at the end of next month, so we'll see if it's climbed up again. I'd really like to be stable around 100.

          I've recently heard that pills aren't as effective as capsules. Any thoughts? Or does it just depend on the manufacturer?
          "He is no fool who gives what he cannot keep to gain what he cannot lose." - Jim Elliot

          RRMS, dx May 2013, on Gilenya from May '13 - Aug. 14
          Currently following Dr. Jelinek's OMS (Overcoming MS) plan

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            #6
            I heard back from my Specialist

            Well...as suspected he did take me off the Vitamin D because it is way too high, even for MSers. Anything over 150 can cause bone issues. But it is only temporary break from Vit D, for I will retest and go back on 50,000 IUs a week in March and hopefully it will remain in the correct range.

            And Marco, you are absolutely right...for the first time in my MS Life, I am finally absorbing the Vitamin D. That is a really good thing.

            Miwealia-I have been told by several MS specialists to only use the liquid capsules...no pills. For years we have been shooting for a level between 80-120. Never got past 41. Safe to say I am there now!

            The only thing I can think of is why it did what it did over a short period of time is I recently went on Tysabri...so I am assuming that is the connection, but I will discuss with my doctor at the end of Jan when I see him.
            Katie
            "Yep, I have MS, and it does have Me!"
            "My MS is a Journey for One."
            Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

            Comment

              #7
              gotta wait

              Originally posted by KatieAgain View Post
              Miwealia-I have been told by several MS specialists to only use the liquid capsules...no pills.
              Hmm...Well, since I only have pills at the moment, and I'm not about to get the vitamin D that's available locally (would you trust medication made in China for domestic consumption??), I guess I'll have to wait until the end of this month to get capsules, when I go to Thailand for my bi-annual checkup with my neuro.
              "He is no fool who gives what he cannot keep to gain what he cannot lose." - Jim Elliot

              RRMS, dx May 2013, on Gilenya from May '13 - Aug. 14
              Currently following Dr. Jelinek's OMS (Overcoming MS) plan

              Comment

                #8
                Originally posted by miwealia View Post
                Hmm...Well, since I only have pills at the moment, and I'm not about to get the vitamin D that's available locally (would you trust medication made in China for domestic consumption??), I guess I'll have to wait until the end of this month to get capsules, when I go to Thailand for my bi-annual checkup with my neuro.
                No...I too have been to China. I really enjoyed the visit. I liked Thailand even better...one of the most beautiful Countries I have ever been to. I got to visit both while stationed in Korea...which I did not like at all!
                Katie
                "Yep, I have MS, and it does have Me!"
                "My MS is a Journey for One."
                Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                Comment

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