Vitamin D3 Deficiency - Looking for some advice please

I have been diagnosed as being very deficient in Vitamin D3. My level was about 25 and the normal level should be at least 50 or over I understand. I have been prescribed 20,000 units of Vitamin D3 three times a week (Total 60,000 units per week). I have been advised by friends and have read on the internet too that if you take high doses of Vitamin D3 you should also take Magnesium and also Vitamin K2. Not knowing what to do I rang the of the makers of the Vitamin D3 and asked them if I should be taking Magnesium and Vitamin K2 and they said it was not necessary and that this is only suggested as it helps to sells the magnesium etc. The chemist at Boots said just take the Vitamin D3 with the main meal of the day with a glass of milk and a multivitamin. I really don't know what to do now or what to believe.

I am concerned about taking this high level Vitamin D3 on it's own if I do need extra suppliments. Since I have been taking it my left leg aches and I have a lot of tingling down my leg into my foot and it doesn't go away. This is really worrying me, I daren't stop taking the Vitamin D3 as I obviously need it but now concerned it could be something else perhaps due to my level being so low for maybe a very long time.

I have to be careful with any tablets/capsules as I am a chronic migraine sufferer and am quite allergic to lots of the ingredients so don't want to be taking more tablets etc. than I have to.

I wonder if anybody else has been diagnosed with Vitamin D3 deficiency and what they have been advised to do. Do hope somebody is able to offer some advice.

34 Replies

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  • Hi,

    I had low vita d blood results. My gp put me on supplements and told me to return in three months for a check up blood test on vita d.

    Unbelievably the lab reported that gp's can no longer order vita d blood test (would have to have poor bone density scan results to order..lie via a consultant). Unbelievable!

    Xx

  • Thanks for your reply. I think the Vitamin D blood tests are quite expensive, that's probably why they are not keen to do the test. What sort of supplements did you GP put you on?

  • I can't remember what he put me on 😐. I think it's awful they can't retest too, especially as gp wants regular long list of bloods done.

    My knowledge doesn't touch the other peeps replies. Thank goodness for them.

    X

  • I always find this site so helpful, lots of lovely people always willing to get in touch when you need information, especially when you are worried, so yes, thank goodness for them x

  • It costs about £30 to have a vit D test from City Assays - see main TUK site - that's what the NHS consider expensive.

  • pump321 I wasn't diagnosed deficient by my GP, I had a private test and my level was 15 (severely deficient). After suggestions from a member on here I took a loading dose of 40,000iu daily for about two weeks, followed by 5000iu daily. I got my level up to 202 in less than two months, then reduced to a maintenance dose of 5,000iu daily Mon-Fri only and my level reduced to 150.

    It's always advised here to also take K2 (MK-7) and as most of us are deficient in magnesium I use the powdered citrate form as a drink giving 350mg magnesium daily.

    I don't know how much the chemist at Boots knows about nutritional supplements but if he knows anything he should have told you to take Vit D with the fattiest meal of the day (or some good fat). Don't bother with any multivitamin supplements, they don't contain enough of anything to be of any use.

    I don't know about the leg aches but tingling is often associated with B12 deficiency. Did you have any other vitamin or mineral tests done?

  • Hi SeasideSusie, Thanks very much for your reply and information, much appreciated. My GP tested my thyroid but that must have come back ok as he didn't say anything about it when he rang me up. I've had lots of blood tests done in the last six months as I had horrible IBS/Diverticulitis problems. One was a Full Blood Count but wasn't told what else they were testing me for.

    I will have to go back if this aching/tingling leg doesn't go away, perhaps he'll test me for B12 deficiency too.

  • pump321 Please ask your surgery for a print out of all the tests you've had, including the reference ranges. You are entitled to them under the Data Protection Act. I promise you that you could be in for some surprises. Doctors don't look or think beyond reference ranges. You could be one point within the top or bottom of a range and be classed as 'normal' but in reality you could be deficient or, in the case of the thyroid tests, just one or two points off being diagnosed as hypothyroid.

    Don't wait to be told, always ask for your results, build up your own health file at home with tests, results, how you feel with regard to symptoms, dose of medication if you're on any. It is very useful to refer back to if your GP wants to change your dose of meds as you could say 'but I am still within range and I feel 'fine' or 'I have gone out of range and would like an increase in my dose' sort of thing.

    Once you've got all your results , make a new post and members can comment and make suggestions where necessary. If you haven't had B12, ferritin and folate tested then ask if he will do them, along with thyroid antibodies.

  • I will ask for a B12 test etc. next time I go back to see my GP. I have only been taking the Vitamin D3 for a week and I have to take it for 10 weeks so will see how I feel and hope adding some Magnesium and Vitamin K2 will help. I am really grateful for all your suggestions and help, very much appreciated. Everybody on this site is always so quick to respond especially when novices like me feel quite out of their depth. Many thanks again.

  • Pump321,

    I was prescribed 40,000iu daily x 14 followed by 2,000iu daily x 8 weeks which lifted vitD from <10 to 107. I didn't take K2 or magnesium with it.

  • Thanks very much indeed for your reply, much appreciated.

  • This sounds horrible, but I always get copies of results from gp. There have been several abnormal results overlooked that I flagged up to gp. He followed them up then!x

  • And that, dear reader, is why you should always get a print out, it's happened to me as well.

  • Assuming you are in Uk, we can now register to get access online to our own medical records. (Not all GP surgeries are up to speed with this yet.) You may be able to access your results through this.

    To register, you need to take some ID to surgery, then fill in a form. They then give (or post) access codes/log in.

    Saves having to do that irritating ringing up receptionist to be told "results are normal"!

  • Thanks very much SlowDragon for info. on obtaining our medical records online, much appreciate your reply.

  • Calcium Supplement | Calcium with Vitamin D and K2 Formula Try looking this up. You can take D 3 on its Owen not a problem. Read up about the rest and then you will know if applicable to you. I take it all but I have osteoporosis, few doctors will test for vitamin d so you are very lucky.

  • Thanks Gig1 for your reply. I will look up Calcium Supplement/Calcium with Vitamin D and K2 Formula. I think the reason they don't test for Vitamin D deficiency is that the test is quite expensive. I think I've been short of Vit.D3 for a very long time and it's been put down to Chronic Fatigue Syndrome. Many thanks again for your info.

  • Taking calcium is not advised unless you have low levels, calcium must be kept within the tight range and going over leads to hypercalcemia which can cause serious issues. You should have your calcium tested before starting vitd.

  • Thanks Bantam12 for your reply and information re Vitamin D3 and Calcium levels. Much appreciated.

  • Yes vit d is a very expensive test to do. Don't forget the magnesium too!

  • Thanks

  • The recommended maximum daily intake of vitamin D3 is 10,000IU for deficient people but as it is fat soluble you can take it in one massive dose. So your 60,000IU a week is under this.

    You don't always need calcium with vitamin D. However lots of people need magnesium and most need vitamin K2.

    Your GP should have checked your calcium and alkaline phosphatase levels with the vitamin D to confirm it's just a vitamin D deficiency.

    Anyway if you don't have a restricted diet so you eat green leafy vegetables, broccoli, almonds, canned fish and/or dairy products then you shouldn't need calcium. If you regularly eat fermented foods like fermented cabbage (auto-correct won't let me write the names) you don't need K2. If you eat lots of tree nuts, fish and leafy veg than you won't need magnesium.

    In regards to the advice of the pharmacist I had loads of ignorant advice from medical practitioners when I was diagnosed.

    Multi-vitamins are a waste of money if you are deficient in anything and as I indicated most people have a diet with adequate calcium already so drinking more milk isn't going to help you.

    In regards to the tingling I know other people who stated they had tingling which went when their levels of vitamin D increased. If yours doesn't go get your vitamin B12, ferritin and folate tested. While most people link tingling to low B12 levels, it's also linked to low iron.

    Finally if your result is under 25nmol/L the majority, but not all, of CCG and healthboards state you should be retested in 6 months as an adult. However due to the cost of the test a few GPs don't tell patients their true number so they can't ask for a test at the 6 month period if the GP forgets. So get your test results so you can ask at the 6 month period.

    If your levels are at or over 25nmol/L in most places you aren't entitled to another test on the NHS for 2 years. However it is still worth getting your results so you can compare with private tests.

  • Many thanks Bluebug for all your helpful information, very much appreciated. My diet is usually good but in the last 6 months I've had severe IBS problems and have been very careful about what I eat so have been on a very restricted diet to try and settle my stomach down. I will have to try and gradually get back to eating all the nuts, leafy green veg etc. to try and get my levels back up again. I may try magnesium and K2 as I could be a bit low if my diet has been rather restricted for quite a while, I don't suppose it will do any harm for a short period to see how it goes.

    If the tingling doesn't go soon I will make an appointment and hope I can be tested to see if I am low on B12.

    I am hoping when I go back to see my GP in 10 weeks time about my Vit.D3 levels that he will do another test, if he refuses I will have to go privately.

    I am vey grateful for your very detailed reply and support, it's so kind of you and everybody else who have replied to me so quickly. I'm very grateful, thank you so much once again.

  • You should ask your GP the guidelines/protocol for the area.

    Rather than disagreeing/being aggrieved with him when he refuses to retest you after 10 weeks it is worth knowing what guidelines you are being treated under.

    In my case I was told because my treatment was from a nurse and they seem more open in saying exactly what is and isn't allowed.

  • Thanks very much

  • My vit D level was 12 so they put me on 20,000 every other day for a month, no advice to take anything else but I added a few extra portions of nuts and seeds, avocado and dark chocolate to my week and the leg pain is now gone 😀

  • Hi Kezza2shoes, Many thanks for your reply. I am very pleased to hear that the 20,000 units of Vit.D3 for a month has helped you and your leg pain has now gone. Did you get tingling with your leg pain? It's only in my left leg and it goes right down into my foot. I wonder if this is a side effect of Vit.D3 deficiency. Thanks again for your info. much appreciated.

  • Hi, I get tingling in feet and hands anyway, I suffer with anxiety, had it since I was about 6 but the panic attacks started during my A levels, means many of the symptoms such as tingling, vertigo, IBS etc that come with thyroid and vit/mineral deficiencies I explained away as anxiety related. I was so anaemic that I was warned I might need a blood transfusion but for months I thought I was just having a lot of panic attacks.

    Also have tingling due to 12 weekly B12 jabs when I could do with them every 8!

    Sorry that I've not offered much insight, it's just as I sit here typing my ring and little fingers on both hands are "weird" and toes too!

    The one thing I did look out for where symptoms of my calcium rising too high, I wasn't supplementing but I'm a massive cheese and yoghurt fan, there's something about VitD increasing your calcium but someone more knowledgeable than I will have more info I'm sure. The first GP gave me VitD and calcium tabs but I questioned this and another GP sorted it, without casting a poor light on his colleague he agreed that this shouldn't have been prescribed without calcium being checked first.

    Hope the Vit D is making you feel better!

  • Hi Kessa2shoes,

    It was very kind of you to send me a message, sorry I've been a couple of days getting back to you but just recovering from a migraine and can think a bit clearer now.

    I'm very sorry to hear you have got lots of problems to deal with which is a shame. Anxiety on it's own is difficult to cope with without all the other problems you have with thyroid, IBS, tingling and vitamin deficiences.

    I wondered if it was the sudden high dose of 20,000 units of Vitamin D3 that had triggered the tingling in my left leg and foot so I've stopped taking it for a couple of weeks just to see but the tingling is still there and my hip aches a lot now too so I'll go back onto the D3 again. The problem for me is also that the D3 gives me migraines, it does say that the side effect of it is a headache.

    I went back to the Dr's and asked for a B12 deficiency test, ferritin and folate, so now waiting for the results to come back.

    It's all very complicated isn't it? Thanks agan for getting in touch and giving me information about calcium etc.

    Well, I wish you all the best and hope you are not feeling too bad at the moment. x

  • Ignore them and take K2, you really do need it. A glass of milk is the last thing you need. Many people are magnesium deficient - far more people need magnesium than calcium, but make up your own mind on that. If there is calcium with your D3, take magnesium as well. I take oil-based D3, biotics research D-mulsion forte (you can get it from revital and use TUK code AFAIK).

  • Thanks Angel_of_the_North for your reply and much appreciate all your information. I am so grateful that there are so many super people on Health Unlocked who respond so quickly with help and support. Many thanks again.

  • I take vitamin k2 (oil based) along with d3 (oil based) and my omegas.

    If you're low on d3 it'd be worth researching 'the calcium paradox'.

    This website is very informative...

    vitamink2.org/

  • Hi HLAB35, Thanks for your reply and info. I will look at the 'vitamin2.org/' website and the 'the calcium paradox'. There is so much to learn and I'm grateful to you and everybody else who have so kindly responded so quickly. This is a great place to get really helpful information and support. Many thanks again.

  • I agree with the advice given here by many. Regarding the migraines - one of my daughters suffered badly and was found to have very low levels of Iron/Ferritin/B12. After all iron is needed for the transportation of oxygen around the body - so if it is low then so will the oxygen and if the brain is deprived - then it will start to shout loudly - a migraine perhaps ? :-)

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