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Vitamin D deficiency - treatment dosage?

Discussion in 'General Treatment' started by mobyjoby, Mar 10, 2012.

  1. mobyjoby

    mobyjoby

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    My GP tested my vitamin D and it came back as 15. She says normal is 50 - 150.
    She has prescribed colecalciferol 20,000 2 per day for 7 days and then 2 once a month for 6 months. so that is 40,000 units per day for the first 7 days.

    I am in the UK but the supplement is sourced from Germany and the patient info leaflet is in German so I can't read it and can't find one online.

    I had a quick look online and it seemed in most places 10,000 day or 40,000 a week were kind of normal protocols and even then people had trouble tolerating it.
    this protocol equates to 280,000 in one week. There has been no mention of possible effects on calcium or other side effects or about possibly taking magnesium with it.

    They only test again after 6 months.

    I am a bit concerned about the seemingly high dose as I read somewhere that toxic effects are most likely to be seen at doses around 40,000 units.

    I am struggling to find or maybe comprehend decent info on this - is there anyone more knowledgable than me who could shed any light on this.

    Thanks x
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Mobyjoby,

    Hmm...this is an extremely high dose and Vit D is one of the few vitamins that can be toxic if you take too much.

    I think most take at most 5000 IU per day of D3 to resolve deficiency. Also, there are two kinds of D3--25 and 1,25. Both should be tested when you are working with a deficiency. The danger of calcium getting too high is also real and that should be tested--and these tests should be done much more often than every 6 months.

    My opinion, but my D3 went to high taking 5000 IU per day.

    I know it isn't so easy to work with doctors on this kind of thing in the UK, but I'd suggest doing more research yourself and only taking what you are comfortable with.

    Best wishes,
    Sushi
    Ocean likes this.
  3. SickOfSickness

    SickOfSickness Senior Member

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    Wow yeah that's a lot. I would do less than she said, no need to be racing to raise Vit D as fast as possible. I read some people do 25,000 for about 7 days, (then 25,000 every week or two), and I was already shocked by that much in a week. That seems about the most. I wouldn't do that much personally, even with your low level, I would do 10,000 a day for a week at the most. I had a low level like yours and was told to do 10,000 only once a week. If I were you, I would also start with only 4,000-6,000 in a day and see if you get side effects.
  4. mobyjoby

    mobyjoby

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    Thanks for both of your replies.
    This seems to be the only source used by the NHS in the UK. My internet searches haven't been extensive but it seems this protocol is widely used but I see nothing about why or research on outcomes and problems.

    So it seems the least I could take if going the NHS prescription route is 20,000 at a time. I wondered about 20,000 every other day or just 20,000 a week but it would need to be some variation of the 20,000 - which still feels high.

    OR the alternative would be to buy a different source of it myself from somewhere. It would get quite expensive (but probably worth it) to buy enough over the counter stuff to make the daily dose high enough. That may be the best solution though.

    I think I will discuss it at my appt on Thursday and not start taking it before them.

    I would like testing sooner than 6 months (this time it took 5-6 weeks for the result to come back!) but will see how the rest of the conversation goes!
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    A number of UK patients order here, as they sometimes offer free shipping to the UK:

    http://www.iherb.com/Now-Foods-Vitamin-D-3-5-000-IU-240-Softgels/22335?at=0

    It is not so expensive except for shipping. Vitacost is another alternative but they don't offer free shipping. http://www.vitacost.com/Vitacost-Vitamin-D3-5000-IU-365-Softgels-Mini-Gels

    Good luck and do be careful with too high a dose. It can actually be very dangerous.

    Best,
    Sushi
  6. Waverunner

    Waverunner Senior Member

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    Hi,

    sounds like you take Dekristol. I started taking it myself three days ago. If your vitamin D status is low you can start with 20000 IUs/day for one week, then 20000 IUs/two days for one week and then one dose per week. This should be pretty safe during winter. Testing your Vitamin D level after 2-3 months is advised.
  7. rlc

    rlc Senior Member

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    Hi Mobyjoby, what your doctor is recommending is good, you are severely vitamin D deficient and it needs to be fixed, the amount your doctor is prescribing should quickly resolve this problem and hopefully you will be feeling a lot better soon, but because you are so low you may have to be retested and given even more.

    Doctors in some countries routinely give injections of 600,000 IUs to the elderly just to treat winter drops in vitamin D levels and there are no side effects from this.

    Vitamin D toxicity only begins when vitamin D levels exceed 375 nmol/L, (150ng/ml). 600,000 IUs will raise vitamin D levels by about 50 nmol/L (20 ng/ml) so there is no way that you will reach toxic levels with your very low vitamin D level with the amount you have been prescribed.

    30 minutes of full body sun exposure will give about 20,000 IUs of vitamin D, so all your doctor has really done is prescribe you an hour in the sun each day for a week. The average male uses about 5000 IUs a day of vit D so doses have to be higher than that to substantially increase vitamin D levels.

    So provided you have no other health issues your doctor is correctly treating a very severe vitamin D deficiency in a way that will heal it quickly, if anything you may need to be retested and have to take more. New research shows that optimal vitamin D levels should be above 125 nmol/L (50 ng/ml)

    Now for the warnings provided you have no other underling problems taking the amount you have been prescribed is safe and should cause no side effects in people, but there are three different categories of things that can cause problems.

    They are interactions with other medications.

    Undiagnosed diseases, which you shouldnt take vitamin D with.

    A lack of co factors.

    Vitamin D3 interacts with some drugs. On this page it says what these drugs are http://www.drugs.com/drug-interactions/cholecalciferol,vitamin-d3.html so if youre taking any other medications make sure that they arent on these lists before taking the vitamin D.

    There are certain diseases that you are not supposed to take vitamin D with; they are diseases such as Parathyroid disorders, Sarcoidosis, lung cancer, non Hodgkins carcinoma and tuberculosis. You shouldnt take vitamin D with these diseases because it will cause a rapid rise in calcium levels, if anyone is having a bad reaction to vitamin D they should get there calcium checked to see if it is high, and then if it is get further investigations to find the underling missed disease. The most common cause is Parathyroid disorders, there is an interesting tread going on here that explains that most doctors dont know how to diagnoses this properly and that it has the same symptoms as CFS and causes bad reactions to Vit D, if anyone is interested. http://forums.phoenixrising.me/showthread.php?16620-Montoya-study-High-calcium-in-participants

    If people have a lack of co factors which are vitamins and minerals that are needed to absorb vitamin D it can cause some side effects the co factors are Magnesium, zinc, boron, vitamin A and vitamin K.

    A lack of magnesium is the main one that causes side effects, raising vitamin D levels can unmask the symptoms of magnesium deficiency which are things like muscle cramps and twitching and palpitations. I went through this myself not to pleasant but bearable and resolved with taking more magnesium.

    So make sure you are not taking any other drugs that may interact with the vitamin D first, if youre going to see your doctor on Thursday ask if you could have any of the other disease that you shouldnt take vitamin d and if you have had your calcium tested, if everything is ok then I would take a dose of the vitamin d and see how you feel you may need to take magnesium.

    Make sure that you get retested after a while so you can see if your level has gone up enough. Its possible that you will need a lot more to reach the right levels.

    If you dont have any of the above three categories of potential problems, then you should be fine on that amount and the vitamin D deficiency should be quickly cured and you will hopefully feel a lot better.

    Ive written up a whole lot of info on vit D in post #56 here http://forums.phoenixrising.me/show...-treat-national-health-shame-and-CFS-ME/page6 if youre interested.

    A lot of the information on vitamin D on the web is out of date because very big advances in research have been made over the last few years. A really good article is, The use of vitamin D in clinical practice, it is co written by Dr Hollis who is the world expert on vitamin D which you can read here http://www.thorne.com/altmedrev/.fulltext/13/1/6.pdf and there is a lot of good information on the vitamin D council web site here http://www.vitamindcouncil.org/ they have information on co factors here http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-cofactors/

    All the best, I hope your treatment rapidly cures your vitamin D deficiency and you feel a lot better soon
    justy likes this.
  8. rlc

    rlc Senior Member

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    Hi Mobyjoby, I forgot to add that the reason why doctors want to aggressively treat and quickly raise vitamin D levels in patients who have extremely low levels of vit D like you do, is that you need vitamin D to absorb calcium, with very low levels of vitamin D like you have, there is a very high risk of getting Osteoporosis (weak bones caused by the lack of calcium which is caused by the low vitamin D) if the patient develops osteoporosis they are very likely to end up in hospital with broken bones and depending on which bone breaks, say one in the spine it can lead to permanent disability. So it is really important to get your vitamin D levels up quickly so this doesnt happen.

    All the best
  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Is this a supplemnet on prescription? I was under the impression that prescriptions are not D3, but D2, so I think if it is in D2 form, you can/should take a much higher dosage since it is not as effective.

    GG

    PS What are the side effects of to high a dosage? Could a person just easily cut back, once they notice the side effects?
  10. SickOfSickness

    SickOfSickness Senior Member

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    Good point above. I would skip the D2 and get D3 instead. D3 is rather cheap. I think it's gotten cheaper especially if you find the ones with higher IU per pill.
  11. Waverunner

    Waverunner Senior Member

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    Dekristol uses Cholecalciferol so it's Vitamin D3. You need a prescription for it because it contains a high dose per capsule but there is nothing special about it. It's the same Vitamin D3 as in normal supplements.
  12. mobyjoby

    mobyjoby

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    Hi,
    yes its dekristol which is D3.
    Thanks for the links Ric - lots to read there. I do have a couple of questions though.

    would it not be effective to take 10,000 ui a day rather than this agressive but intermittent approach? Also I have read that when the body gets enough sun to produce more than 20,000 units/day a process starts that degrades some of it so that daily levels don't reach toxicity. so taking 40,000 isn't then necessarily equivalent to 2 hours in the sun surely?

    do you know if sun sensitivity is contra-indicated for oral supplementation. I do suffer from polymorphic light eruption but this has only usually been evident when on holiday in hotter climates. having said that I did get affected in the UK on one occasion last year.

    Thanks
  13. Waverunner

    Waverunner Senior Member

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    The body stops producing Vitamin D from sun exposure on its own. I don't know what the upper limit of production is but I heard that it's around 50,000 IUs/day. To my knowledge (which is limited) there are no studies that prove a connection between higher Vitamin D intake and sun sensitivity. 40,000 units are a lot in my eyes but you are far from reaching toxic 150 ng/ml. As a compromise I would take 20,000 IU/day for one week, then 20,000 IU/2 days and then maybe 20,000 IUs every 3 days for 1 months.
    justy likes this.
  14. waiting

    waiting Senior Member

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  15. rlc

    rlc Senior Member

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    Hi Mobyjoby, if you dont have any of the problems that I mentioned in my last post, there is absolutely nothing wrong with taking the amount that your doctor has prescribed, these kinds of amounts are routinely given to people with vitamin D deficiency with no side effects. The amounts only sound a lot because IUs are an incredible small unit of measurement.

    Sure you can treat it by taking 10,000 IUs a day, but this will delay your recovery and mean you suffer longer, with what your doctor is advising you will get 280,000 IUs in a week, at 10,000 a day it will take you about a month to take the same amount. If you have any of the three problem areas I mentioned in my last post you will experience problems weather you are taking 10,000 or 40,000 IUs a day.

    At your level of 15 you are severely vitamin D deficient, which puts you at risk of Osteoporosis, vitamin D deficiency causes profound chronic fatigue because it is needed to absorb Phosphorous, which is needed for your ATP to work properly, ATP is like little batteries inside all your cells if they dont work properly you have no energy for everything, Vitamin D deficiency also causes muscle pain, bone pain, respiratory problems, depressed mood, poor concentration and sleep and stomach problems, without enough your immune system cannot work properly and you will be susceptible to all infections, a lack of it is linked to causing a large number of cancers and other diseases, so it is a major problem that may account for all or at least a major part of your symptoms, it is after all a essential Hormone not a Vitamin.

    My concern with the treatment that your doctor is recommending is not the initial weeks treatment, it is the two 20,000 IU doses a month and then retest in 6months. The reference range that your doctor is quoting you 50- 150 is the old one which has been used for decades, modern research says that it should be 125-200 this is because people do not start storing vitamin D below 125nmol/L, so you are 110 below that level, however with the old reference range below 50 was considered deficient, but below 75 was considered sub optimal and levels should be above 75, so you are 60 below that level.

    Although they are only estimates it has been found that 600,000 IUs raises Vitamin D levels by about 50nmol/L, you will be taking 280,000 in the first week and 240,000 IUs over the next six months, so a total of 520,000 so if that raises you level by about 50 nmol you will only be around the 65 level still at sub optimal levels according to the old information, and only half way towards where the new research says that people should be.

    If I were you I would be wanting to get retested after at the most a couple of months to make sure that levels are going up enough and if they are not I would want the dose increased, dont know if you have been tested for it, but conditions like Celiac will stop you absorbing the vitamin D it is a common cause of Vitamin D deficiency, also if your levels of co factors are low it will also affect your ability to absorb vitamin D and your levels will not rise as much as is needed, if you get retested sooner you will be able to see if these kind of problems are going on, waiting six months in my opinion is too long.

    To give you some idea of treatment levels, my test showed a level of 56 nmol/L way higher than yours, I got my levels up above 125nmol/L and have experienced considerable improvements from doing this, but I would have taken about a million IUs to do this, again sounds like a ridiculously high amount but only because IUs are an incredibly small unit of measurement, I also had a lot of sun exposure as well, I did experience some side effects but those were fixed by taking co factors, I was Magnesium and zinc deficient.

    Regarding the sun, you only stop taking in vitamin D from the sun when the body is full and nearing toxicity this is at levels of about 375 nmol you are about 360 nmol/L away from toxicity. From what Ive read the body doesnt have a daily limit of how much vitamin D it will take in from sun exposure, if you are deficient it will take in as much as it can get every day until the deficiency is cured, after that it starts to store the vitamin D this is at levels above 125 nmol/L. I would imagine that because you are so severely deficient it would take you many months of sun exposure in very good weather before your body came anywhere near these levels.

    As far as I know sun sensitivity is not a contra indication for taking vitamin D supplementation, but ask your doctor about it.

    My opinion is to make sure that you are not taking any medications that interact with vitamin d, ask your doctor to make sure that you dont have any of the conditions that you shouldnt take vitamin D with, and make sure they have tested for Celiac, and if all that is OK try a dose, if it is fine keep taking it as prescribed, if you have some side effects like the ones mentioned on this page for magnesium http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-cofactors/magnesium/
    You may need to take cofactors, and then try and get retested in a few months to make sure that your levels are rising enough.

    Vitamin D deficiency at the level you have is a very serious, but very treatable illness, and the quicker you can get it fixed the better, it may be the sole cause of your health problems, but even if it isnt getting it fixed and curing all the symptoms it is causing will give your doctor a far clearer picture of what is going on and will help them to find the problem, vitamin D deficiency can cause a lot of symptoms and leave you susceptible to a lot of other infections which you wouldnt have if your vitamin D level was normal, which can make it impossible for a doctor to work out what is going on until it is fixed.

    Hope this helps, and taking the vitamin D goes well, you are actually very lucky to have a doctor who thought of vitamin D deficiency, It took me about 16 years to get it tested and that was only because I demanded it, even then they told me it was fine, when it actually showed I had sub optimal levels even under the old reference ranges.

    All the best
    beaverfury likes this.
  16. taniaaust1

    taniaaust1 Senior Member

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    What Im hearing on this thread is suprising me as I studied nutrition at collage and the info I was given and what is in my text books from there, is so different to what Im hearing said here. (I guess my info is old as I was at collage 14 years ago). We were warned that vitamin D being fat soluable etc can be very toxic etc etc. Too much D can cause many symptoms and death.
    .....

    I had/have severe vitamin D deficiency too thou not as low as yours, the test I I was at 32 (normal test result for the lab test was 60-160).

    The way the doctor tried to treat me was just to start me on daily 2000IU of D3. I got it retested later and found it had dropped even lower with that supplementation.

    The doctor didnt really know what to do so then just ignored it.. and I just continued taking the standard supplementation of D3 2000IU. Years later, a doctor at the hospital gave me a D3 100,000 dose I think it was (I had that once, it was a powder form) .... and some time after that another doctor put me on a 100 000 dose per month which I had 3-5 doses of which I had to get from a compounding chemist.

    Since then another doctor has told me to go to taking D3 4000IU per day.

    Seems they all have different ideas in treating D deficiency. In my case my D2 levels are fine and in middle range.. its the D3 in my body there is an issue with.

    As none of them have followed it up my D situation, as far as I know my D3 has never been gotten into normal range.
  17. mobyjoby

    mobyjoby

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    Hi Ric,
    thanks for taking the time to write such thorough replies - I will try to take it all in.
    I should clarify that my measurement was in ng/ml (actually I may be assuming this because that is what is mentioned in the protocol description)so maybe not quite as bad as you think but still very low. The doctor said normal was from 50-150 but I have since seen this as 50-80 so maybe she meant that 150 was when they would be concerned about toxicity? or maybe she was just confused herself!

    Jo
  18. rlc

    rlc Senior Member

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    Hi mobyjoby, you need to find out for certain whether your level is in ng/ml or nmol/L it makes a big difference to how much vitamin D you will need, if your measurement is in ng/ml thats better, one ng/ml equals 2.5 nmol/l, so if your 15 is in ng/ml your level in nmol/L is 37.5 still very low, different countries use different units of measurement so it gets confusing.

    I dont know why your test is in ng/ml but your doctor is quoting you the reference range for nmol/L 50-150 strange. Everything I have been saying is in nmol/l because of this, so in ng/ml you should be aiming to get above 30ng/ml which is 75nmol/L to be above sub optimal levels according to the old reference ranges, and if you want to get to where the new research says level should be it is above 50 ng/ml which is 125nmol/L, life would be so much easier if ever country used the same units of measurement.

    All the best
  19. rlc

    rlc Senior Member

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    High Tania, the whole vitamin D world has been turned on its head in the last decade because of discoveries that have been made, in the past they were very concerned about toxicity from quite small doses, it has been found that this belief was completely wrong, and people have to take insanely large doses for a long time and get there level way higher then is recommended by the new research which is about two times higher than previously believed before toxicity starts. It is completely safe as long as people dont take ridiculous amounts and keep their Vit D levels monitored to make sure they are not going to high.

    Not only have they found that levels should be way higher than previously believed, and that it is very safe even with high doses as long as some common sense is used, they are finding vitamin D receptors in cells throughout the entire body, which means that all these cells use vitamin D, and therefore any deficiency will be affecting numerous systems in the body, in the past they believed wrongly that the only thing it did was help the body absorb calcium. Unfortunatly most doctors are out of date and don't have a clue about any of the new research.

    It looks like it might be a good idea for you to get your vit D3 retested and find out what is going on, they have found that the average person uses between 3000 and 5000 IUs a day, so treatment at levels of 2000 or 4000 IUs a day is likely to achieve nothing in the way of treating deficiency and will be lucky to just be keeping up with daily usage.

    A lot of people get a lot of benefit from getting there vitamin D levels up, so if your test show you are low then it maybe a window of opportunity for you to do something that may help you.

    All the best
  20. Mij

    Mij Senior Member

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    Testing Vitamin D levels are important when taking Vitamin D3 because we all metabolize it differently.
    I was deficient 6years ago and took 4000iu/day, this was too high of a dose for me because it brought my levels over 120 within 2 months. I have since reduced the dose to 2000iu/day and this keeps my levels within the new normal range. No improvement in symptoms for me though.

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