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Hi, how long does it take to recover from a vitamin D deficiency? I've had 18 months of bone and muscle pain and fatigue, and misdiagnosed with fibromyalgia a year ago until I saw a rheumatic consultant in January and she ordered a vitamin D test which showed I had a level of 20. I've taken a loading dose of twelve 25,000IUI tablets over 6 weeks and just completed this, and will now go onto take a 1000iui supplement daily. Unfortunately I'm not feeling any better yet and still have significant lower and upper back pain. Do you think the deficiency is causing this pain and how long might it take before I get better? I read that it can take 3-6 months. I want to feel hopeful that the deficiency is the reason I've been feeling so awful so would really appreciate any advice. Also the doctor said to take 800IUI as a maintenance dosage but I plan on taking 1000IUI or should I take more? Thanks

Asked by  Byrdie50 on March 25, 2018

  •  Byrdie50 on

    See title

    Answered by  Byrdie50 on
  •  IAW on

    Brydie if I could ask you a couple of questions, a little more information will help me. When you said you had a level of 20 do you know if it was measured as ng/ml OR nmol/l because it makes a big difference? (If you do not know I might be able to figure it out by what country you live in.)
    When you said a “loading” dose does that mean perhaps you took 2 tablets once a week for 6 weeks?
    Does the doctor plan on retesting your levels?
    Depending on your answers above, I can probably help you better. At this point I would say you absolutely need to have your levels tested again, right now, to make sure they are even increasing and by how much they have increased. If the doctor is not going to do this, then you will need to do this if you want to get better. The VDC sells test kits or depending on where you live you may be able to order blood work yourself but will have to pay for it yourself. I am saying to do this so you do not waste any more time feeling bad. So for example if you took a test right now and your level was now 25, something is not right because it should be much higher. IF your level has risen quite a bit but not enough, then you need to take higher amounts of Vitamin D until you are better. There are also co-factors, vitamins and minerals, that vitamin D needs to repair things. If there is not enough in your diet or you do not supplement, this could be the problem also.
    Weight is also a factor for Vitamin D. If you weigh a lot more than 150lbs, you need to tell me. If you have any “gastro” issues this can cause Vitamin D not to absorb and this is why you need to test.
    I can tell you right now the 1000 iu (or the 800iu) is NOT going to be enough to do anything for you. The minimum is 5000iu a day for an adult but you are not well yet so I do not recommend taking this amount yet.
    You said you “just completed” the 6 week course. So this is what I would do. Wait NO more than 5 days and then start taking 10,000 iu of Vitamin D a day. Do this until you can get tested and get the results and let me know what the results are.
    In the mean time please read http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-and-other-vitamins-and-minerals/. Besides calcium bones also need magnesium, vitamin K, zinc, boron and silicon.
    For future reference you need to take any “given amount” of Vitamin D for 8 weeks to then see what your level will be on that “particular amount”. Here at the VDC we believe in maintaining a “healthy” level of 50ng/ml(125nmol/l) because at levels at 40ng/ml and below your chance for cancer and autoimmune disease rises “dramatically”.
    I look forward to your answers and if you have more questions, just ask!

    Answered by  IAW on
    •  Byrdie50 on

      Hi thanks for your reply. My level was 20 ng/ml. I live in the UK. Yes I took 25,000IUI tablet twice a week for 6 weeks and just took the final one on Friday. My doctor’s advice was to take 1000iui each day from next week (In all the UK commissioning guidelines they seem to say adults need between 400-2000IUI?) He said he wouldn’t retest my levels as I was now deemed to be replenished. I weigh over 200lbs although I was less than this when my back problems started. I don’t have any gastro issues. I was going to order a test kit so I will do that now. Thanks

      Answered by  Byrdie50 on
  •  IAW on

    I am 100% sure if you live in the UK that Vitamin D is measured as nmol/l. Do you have a copy of the paperwork? IF it really was 20nmol/l and not ng/ml that translates to 8ng/ml and that is VERY low. That would be in the “adult rickets” range.
    I know what the government guidelines are and they are too low even in the USA. This is why the VDC exists and also several other organizations. The science tells us this but the government is not listening at the moment. (It is complicated. Think government bureaucracy! I’m sure you have that in the UK just like we have it in the USA.)
    He deemed you “replenished” without even verifying. Most doctors at least check to make sure.
    Now I said to take 10,000iu a day for two reasons. One you are not better. Two, for example, if he had said you were replenished and not to take anymore Vitamin D, levels decrease by half every two weeks if you are not taking anything to replenish them. Therefore by the time you get that test kit and take the test and send it back in, we will not know what your level was taking the 50,000iu once a week. It would be like starting all over again. So you need to keep taking that amount so we see what level the 8-10,000iu a day gives you and go from there.
    I should have said that from here on out you need to take Vitamin D daily and not the way you were. It is better for you to take it daily. The once or twice a week is OK but not the best. Always take Vitamin D with a meal or snack that contains fat. It absorbs better this way.
    The rule of thumb is 5000iu a day for an average weight adult. Then add another 1000iu for every 25lbs over this. So for 200lbs that is 7-8000iu a day for a healthy individual with no problems. You probably needed more like 10-15,000iu a day to get you better and then a maintenance dosage of 8,000iu a day. Everyone is different and so testing levels come in handy.
    Now don’t forget to read about the co factors in the link above.
    Every once and a while I have “hesitant” individuals that say “but the doctor says…” Eventually sometimes I have to say you can do what the doctor says and be sick or you can listen to me and be well.
    Without a level it is hard for me to determine if it is just not enough Vitamin D still making you unwell, or lack of a co-factor or years ago doctors use to prescribe calcium supplements to go with the D if your levels were extremely low. Nowadays they don’t do that either.
    As for length of time to get better. It depends on how much Vitamin D you take upfront. So really you need a lot more in the beginning to get better and then less later on when you are well.

    Answered by  IAW on
  •  Byrdie50 on

    Hi thanks for your reply. I’ve just received my blood test result back (taken on 15th April) and my level was 87.8 nmol/L (it was 20 nmol/L in late January and then I took the loading dose for 6 weeks and 1500iui thereafter daily). So this is obviously a big improvement and now fairly high – I plan to take 3000iui daily as that is what I am comfortable with (and we’re moving into summer here in the UK) and take my levels again in 6 weeks – my follow up question is though obviously my levels are higher but I’m still getting lots of muscle and bone pains/ache – will this take some time to improve or is the pain perhaps not related to this (which I know is impossible to answer). I started the loading dose on 2nd February so it has been almost 3 months. Thanks

    Answered by  Byrdie50 on
  •  IAW on

    If I have this straight, after March 23rd you took 1500 iu a day and not 15,000iu a day for 3 weeks until you tested on April 15th??? If this is correct, then yes you could still be having muscle and bone pain because your level on the 15th is only 88nmol/l(35ng/ml). Your level is now even lower than the 88nmol/l because once you lowered the amount you took, your levels will keep going lower.
    So if I had to “guess”, if you would have continued to take 8000 iu “a day” starting on March 30th thru to April 15th when you tested, your level was probably around 125nmol/l but it is a guess. For future reference you need to take the same amount of Vitamin D consistently for 8 weeks and then test. While waiting results you should still keep taking the same amount. If this was the case and you made it to 125nmol/l, then you should have kept taking that same amount because your weight is a factor.
    Since your levels are now a lot lower, this has prevented actual “repairs” and why you still feel bad. So although it has been 3 months, you only took a “reasonable” amount of Vitamin D for 6 weeks.
    Had you spent the entire last 3 months taking 8000iu a day and still felt bad at this point, I would either have suggested giving it several more months at that amount OR I would have said increase the amount you are taking from 10-15,000 iu a day and see if in two more months you are better.
    Once you are “sick” you cannot necessarily assume a certain level will equal feeling better. If I were you I would go back to taking 8000 iu a day and get some sunshine and see what happens.

    Answered by  IAW on
  •  Rickymclain on

    Is this done with? Or is the problem solved yet ? Also curious if you had nausea while doing excercise and if your muscles were weak as well as in pain ?

    Answered by  Rickymclain on
  •  IAW on

    Hi Ricky!
    Most people do not come back and post again unless I specifically ask them to. In the above case I had a harder time convincing them that they were not taking enough Vitamin D to get better. They also had the “chance” for some summer sun. So they may not have any issues until they get further into fall and winter. Their problem may not exactly be “solved” yet.
    Muscles use a lot of Vitamin D. Most people usually describe “weakness” when low on Vitamin D. Bone pain usually indicates Osteomalacia.
    When you have low Vitamin D, calcium does not absorb very well from the intestines, this can also cause symptoms even though you may be “in range” on a blood test. Blood tests only measure the 1-2% in your blood stream and not total body stores.
    Nausea can be caused by having a low mineral. It usually doesn’t fall under calcium but does fall under magnesium and/or potassium.
    If you would like to post your own “story”, I will try and help you. It would be best if you created a separate post, about yourself, if possible.

    Answered by  IAW on
  •  Ingridlw on

    Have you had your calcium and parathyroid hormone (PTH) tested? I strongly suggest you should. Your symptoms sound like Hyperparathyroidism. My husband recently had parathyroid surgery and his symptoms were low vitamin D, bone and muscle pain, along with high Calcium. Many people who have Hyperparathyroidism have been diagnosed osteoporosis and osteopenia and misdiagnosed with fibromyalgia. I wish you well on your journey to good health!

    Answered by  Ingridlw on
  •  Furqan on

    My Vitamin D level is 13.9 ng/ml. I had severe back pain and neck pain and extreme stiffness in my neck and shoulders. And I had regular stress headaches because of my neck. I was diagnosed with Vitamin D deficiency after my test. And my doctor prescribed me 600,000 iu per week for weeks. I’m afraid that is too excessive. Could you kindly confirm this? I have had two doses and I do feel better as before I couldn’t sit a few mins without back support as my back would hurt a lot.

    Answered by  Furqan on
    •  IAW on

      Are you sure he did not prescribe 60,000iu per week instead of 600,000 per week? The 600,000iu is “TOO MUCH”. If it is 60,000iu that is fine but then how many weeks are you suppose to take it for?

      Answered by  IAW on
    •  Furqan on

      Yes I am sure it is 600,000 iu. I’m supposed to take 4 doses one per week. I have had two. It did seem excessive to me but I thought maybe the body doesn’t absorb that much in one go anyway. Kindly let me know if I should take the remaining two doses or reduce the potency of the dose?

      • This reply was modified 4 months, 3 weeks ago by  Furqan.
      Answered by  Furqan on
    •  IAW on

      Hi Furqan!
      I am not a doctor. I do know, though, that taking too much Vitamin D can “de-regulate” the Vitamin D “system”. In the study I refer to, people were given 70,000iu once a week and it showed this “deregulation”. Besides this, these huge amounts sometimes lead to mineral and vitamin shortages in the body which then add more symptoms.
      You are not the first person to come here who was given such a large amount. The best I can suggest is to not take anymore for 6-8 weeks. After that what we recommend is this. Take 8000-10,000iu of D3 PER DAY for 8 weeks and then retest your levels to make sure they have recovered enough. If all of your symptoms are not gone at that time, come back and tell me and let me know your new level.
      If you are all better then, after that you need to take a “maintenance dosage”. This for a person weighing 150lbs is 5000iu a day, forever. If you weigh more, you have to take more.
      It is very important to read http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-and-other-vitamins-and-minerals/. If the Vitamin D does not have enough magnesium to go with it, this is the number 1 (one) reason that Vitamin D can then give you “symptoms”. If any of your symptoms get worse OR you get any new symptoms, come back and tell me.
      If you have any more questions, just ask!

      Answered by  IAW on

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