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Could I be on the wrong dosage for Vit D deficiency?(29 Posts)
I have ME / CFS and have done for years. I’m debilitating, but I can still get out and I’m not (usually) bedbound. Over the past few months it’s like someone has sucked all of the energy out of me. I can hardly go out (and when I do it’s with my DH) and spend hours just lying on the bed hugely achey and exhausted.
I finally went to the GP before Christmas because I couldn’t shake the feeling that it wasn’t just my “usual” tiredness. After multiple visits for MANY different blood tests I’ve been told that I have low vitamin D levels. The GP wasn’t actually the one who ordered the tests (someone I saw in his absence was) and he was pretty dismissive of it when I saw him.
I’ve been prescribed a seven week course of D3 20,000 IU once a week. My current vitamin D level is 20.
I’ve been doing a bit of research and this seems to be a really low treatment dosage considering how low my levels are? Should I be on something higher? Considering just how terrible I’ve been feeling, I’m really keen to crack on and get my levels (and hopefully my energy / sanity) up as soon as I can.
Does anyone know what they were prescribed for these levels? Or if this is ok?
Dd was on 5000 a day when her levels were 45.
Hi, my level was 12 a year ago, took 20,000 IU a day for a few weeks (cant remember exactly how long) then 1000 IU a day to maintain in the acceptable level, and will continue this dose probably for ever.
I take the vitamin d in oil and have 8,000 iu a day - that got my vid d from 5 to 65 in about 4 months.
Make sure you take it either in oil or after a meal that contains at least 14g fat as it's needed for absorption
I am aiming to get my vit d up to about 150 as this is when your body begins to store it in the right places (heavily simplified)
just to add my dosage is so high I think because i am very obese and that makes a difference. If you are a normal weight or only slightly overweight probably 4000 or 5000 a day would do it. 20,000 a week seems a little low but it will get you there in the end.
A daily dose is supposed to be better for you overall though rather than weekly superdosing
I might make an appointment with another GP and see if I can have my dose upped. Or maybe just supliment my prescription myself with extra I buy myself? Although that feels like a bad idea maybe? I’m too much of a rule follower!
Make an appointment with another GP and, if necessary, ask them to refer to the NICE Guidance for treatment of Vit D deficiency.
That's a standard dose for vitamin D deficiency (20 000 units weekly.)
The maintenance dose is usually 800 units rather than 8000 units.
I was at 20 just before Christmas. GP gave me 40,000 once a week for 10 weeks. Haven't been retested yet though.
Have a look at this thread , it will give you lots of information.
I posted quite a bit there , about doses , and why you need to keep your level up above 100.
At a level of 20 , you are very likely to have severe muscle and bone aches and pains. In fact , a level of 20 is so low it can be found in children with rickets.
I have posted quite a bit here on mumsnet , about vit D , search my username for more info, or get back to me if you need any more info.
Best of luck. Hope this is useful.
P.S. here is another thread , which would be of use if you have low vitamin D. It is a long read , BUT lots of info.
bettertobehealthy You’re amazing! You’ve been so incredibly generous with your time and knowledge on those posts!
I’ve been trawling through those posts for the past hour or so and feel like I’ve learnt lots. I’m feeling very hopeful that getting my levels up will have a big impact on how I’m feeling. You’re right - I’ve been getting very bad pains at the base of my skull and in my shoulders (as well as the energy loss, brain fog, anxiety etc). I’d be really interested to know your thoughts on the dose that I’ve been prescribed? As I said in my OP, I’m keen to get my levels up ASAP - my life feels like it’s at a standstill at the moment! Would you recommend revisiting my GP, and if you would do you know what sort of dose I should be looking for?
Many, many thanks again to everyone who’s taken the time to reply to my post!
I’d love to l know same
Mine was 19 been given 7 weeks of 40000 and no info on if that’s it or what happens after. Half way through now not feeling much different.
FairyLightFiend I posted earlier a link to the NICE Guidance on recommended doses. I suggest you see your, or another, GP and ask them to review your dose in light of what the guidance recommends.
Thanks Bore. Yes, I did look at the link that you posted. It was really helpful, thank you. Because it states that treatment plans can include the ones suggested (and wasn’t an exhaustive full list) I was still interested in what others thought.
How would a pregnant woman safely increase levels ?
hi again fairy ! ,
when considering what you should do with regards to Vit d supplemention , can I ask, do you have any gut malabsorption problems ( Crohn's ,coeliacs IBS, bile or gall bladder out etc, are you vegetarian). When a level as low as 20 arises , very often there will be other factors involved. It may be that your own genetic make up may reduce your ability to utilise the Vit D that your body encounters from all sources. Do you have any other specifically autoimmune processes going on, or possibly a long term glandular fever episode in your teens? ( Epstein-Barr virus). IF you don't want to disclose on an open forum , then PM me.
Do you suffer from, hyperparathyroidism, sarcoidosis, or granulomatosis , Williams syndrome or hypercalcaemia? ( these last 5 being contra indications of Vit D supplementation) unless with strict medical supervision available. They are very rare conditions.
For the time being , assuming none of these apply.
You have a decision to make ... are you going to stick strictly to NICE guidelines or not. By the way the treatment you have been given does not even reach those guidelines. You should be on more than 140,000 over 7 weeks, in fact double that would be more appropriate. However the latest Vit D research points to daily dosing being more advantageous. ( You will see the NICE guidelines are constructed mainly from the National Osteoporosis Soc. - where bone metabolism is the primary consideration. ) The level of 50 nmol/Litre being considered sufficient is again only for bone health. Vitamin D has many more effects other than bone health. Indeed , researchers have found that practically every cell in your body has a receptor, and 2000 genes have Vitamin D response elements ( 10% of your total genes ) within those cells.
In addition, following on from your initial loading dose , the NICE guideline suggests only 800 IU daily. Which, when taken by an averagely responding adult , over the long term, will raise their blood level by about 20 nmol/L. In your case , I would suggest that would be insufficient. Over the long term, with that regime , your blood level will be in the order of 40 nmol/L, still insufficient.
A loading dose commonly about 300,000 IU , will raise your blood levels, BUT , if your own metabolism requires say 2000 IU per day , then you blood level will inevitably fall if you are supplementing by only 800 IU per day.
The key point to understand , is What is your blood level We all have different responses to supplementation , by a factor of 6 to 1 . The fact that your level was 20 , means there is a possibility that you might be a low responder , or you may have absorption problems. The method of supplementation can influence your response, hence some of my questions above ! Maybe you just never get sunshine on your skin, or always apply suncream, ? Whatever the reason , you should be able to raise your level to over 100 , preferably higher.
I am sorry to hear that you are so badly affected by ME /CFS , by improving your blood levels of Vitamin D you will almost certainly improve things for yourself. In my opinion.
I would recommend that you have your blood levels measured , you can do it through your doctor , on the NHS , but they are quite reluctant to do so sometimes, especially if you have been treated. The assumption that treatment will definately make the necessary change to your blood level is not correct. The assumption that 50 nmol/L is sufficient , is not correct. Measurements can be made by several laboratories. This is popular, one of the biggest.
www.vitamindtest.org.uk/ . It is an NHS lab, a blood spot test kit is sent to you, which you send back to them, results are emailed to you within a week. Unfortunately , they do charge £28 if the test is not doctor ordered.
IF i were you , then I would take supplementation , in order to have 300,000 IU total, as my loading dose , then I would take 4000 IU per day thereafter. I would want my blood level to rise to at least 120 , and preferably 140 - 160 , because I am try to heal the effects a long term deficiency. You may need to adjust your dose of supplementation. After 60 to 90 days , you will be in equilibrium from any particular dose. Take a measurement , see where you are, then adjust your dose if necessary.
It is not good practice , to start , stop and restart supplementation. Your body gets used to a certain input, the enzymology works best with a constant level.
There is a great deal understand , concerning Vit D , perhaps you have read several of the other threads , they may be useful as well.
Please note , that 4000 IU per day , for an adult is considered safe , in the long term. Please refer to the National Academy of Science , Institute of Medicine, USA guidelines on Vitamin D. A very conservative , well respected institution.
It should be mentioned , that there is a school of thought that says doses of 10,000 IU per day , taken for 60 to 90 days , then measurement of the blood level and then subsequent adjustment of supplementation dose to achieve the desired blood level is acceptable. This protocol is somewhat further outside the NICE guideline. The IOM ,mentioned above, does however say that 10,000 IU daily supplementation is the NOAEL, ( No Adverse Event Level ).
Whew ... hope that helps, and I hope you feel better soon.
best of luck ,
Akire You have been prescribed a loading dose of 280,000 IU , Vit D3, spread over 7 weeks,
On that dose, of approx 6000 IU per day , you can expect that to reasonably quickly, start to raise your blood level of 25hydroxyD3 , (also known as Calcidiol ),.
You should be starting to feel some benefit , towards the end of that treatment.
The adult human body , generally has a reservoir of about
1 million plus ( IU ) of Vit D. Depending upon total weight and BMI
Your measurement of 19 nmol/L Calcidiol ( i.e. 25 hydroxyD3) is very low. As I have explained to fairy the originator of this thread, you might very well be experiencing the symptoms of adult rickets. Bone and muscle pain. This is actually called osteomalacia, , whereby you may not be absorbing sufficient calcium from your nutrition. This might be a problem , if you avoid sunlight on your skin , or avoid calcium containing dairy products. Those of us, with darker melanin pigmentation require more sunlight on skin than those with white skin. If you are in the UK , then you can only make Vitamin D by exposure to sunlight between 11 am and 3 pm in the summer , but none in the winter , between November and March.
My advice to you , would be to measure your Vit D , after your supplementation.( as described above- at the Vit D laboratory ) It is very likely that you need 2000 to 4000 IU per day , in the long term to keep your vitamin D level adequate.
Adequate blood levels are at least 100 nmol/Litre. preferably 120 - 140 nmol/Litre .
Please look above , to my advice to Fairy it applies to you ! It applies to anyone that has been diagnosed with "low" Vitamin D.
hope this is helpful
Thanks that’s v helpful, can I get 2-4000 a day over counter or would u need to see the doctor again? I have other disabilities and house bound a lot of time hence so low.
Hi Again - AKIRA
yes , you can get any supplement , that you want or need , ( within reason ).
from 400 IU to 50, 000 IU, tablets or gel capsules, or oral spray.
Recent research has shown us that Vit D3 is much more useful to mammals, i.e us humans. Do not use Vit D2. (a plant derived compound : previously commonly used in supplementation. )
You have described a very low level, 19 nmol/Litre. Assuming you do not have gut absorption problems , Crohn's , Coeliacs, Gall Bladder out , IBS, etc , , then you should be able to absorb bovine gelatin capsules . i.e. vitamin D ,dissolved in olive oil, in a gelatin capsule, with no other additives. These would be the cheapest , about £ 15 per years supply.
IF you consider that you have any kind of gut problem, then an oral spray , which is absorbed directly into the bloodstream may be more useful. These sprays bypass the digestive system. 1000, or 3000 or 4000 commonly.
Have a look on Amazon, there are lots. Try to use a reputable company. Once you have finished your loading dose , i.e. your prescription , I would advise using a daily dose, of several thousand. Get a blood level taken , by your doctor , ( If not - then by the lab mentioned above ) NHS doctors might not order a re-test, in order to save money .
I would advise testing your blood level after about 60 to 90 days , of daily supplementation , of a regular dose. Lets say 3000 IU or 6000 IU of oral spray. IF after your test , your level is , lets say , 100 nmol/Litre, you know whether to slightly increase or slightly decrease your supplementation. Some people with high BMI commonly need 6000, 7000, or 8000 IU, some people are quite sensitive , they only need 2000 IU or so. It is very dependant upon your own physiology. Your own genetic heritage.
It is very sad to say , that most doctors only receive about 1/2 a day training in Nutrition. Vitamin D is a micro nutrient , BUT , it is a hormone , the only substrate limited hormone . The level of this hormone depends upon your lifestyle. Sun exposure, diet, use of suncream ...etc. Many of us can be deficient , as you are.
Best of luck . Try to keep your level up. Don't just stop some kind of supplementation after your prescription has finished.
IF you need any more info , then please do get back to me ,
Have a look at those threads I have shown above. Lots of info as well.
My levels are 23 and I’ve been prescribed 25000 iu for twice a week so total of 50000 a week for 6 weeks
Hi again Better !
Once again, THANK YOU for for being so generous with your time. Apologies that it’s taken me a couple of days to reply. It’s the nature of the beast that I unfortunately spend large amounts of time unable to type etc...
To answer your questions; I’m vegetarian (and have been since birth) and don’t drink milk often either. I do eat cheese and eggs. It was suggested that I might have Glandular Feaver when I was a teenager, although it was never confirmed. Looking back, it certainly seems like the fatigue started then, although it’s got far worse over the subsequent 15 or so years.
I don’t believe that I have any of the other conditions that you mentioned and, although I have some food intolerances (not allergies) that give me an upset stomach, I don’t have IBS.
I’m very fair skinned and always avoid the sun (although I love sunshine - it makes me feel like a different person!). I dislike getting too hot in the summer and always avoid sitting in direct sunlight.
I’ve spent so many years thinking that I couldn’t feel better that to have someone say that I could feel better simply by taking supplements - that’s just mind blowing! I feel more positive than I have done in a long while!
I’m trying to get an appointment with the GP who ordered the blood test (rather than the one who gave me the low dose) to ask to have my dose hugely increased. I’m hoping that if I take in print outs of the NICE guidelines and the American guidelines that you mentioned that I might be taken seriously. Unfortunately when I first went to the GP I also spoke about having high anxiety (connected to never having the energy to do anything - I was always worried that something would happen that I wouldn’t be capable of dealing with) and now I think I’ve been labled as neurotic. I keep having to refuse anti depressants and telling them that I’m not depressed, I’m just exhausted! I want to be as measured and calm as I can be on my next visit!!
Can I ask, even on the 20,000 weekly dose, when should I expect to start noticing a difference? Does it creep up, or do I have to wait for a certain level before I start to feel it? I do feel ever so slightly better after a couple of weeks of 20,000 but I’m pretty sure that’s all in my head!
Thank you so much again!
Hi againFairy ,
Your dose of 20,000 once per week , is quite a low dose , to sort out a major deficiency such as yours. It works out at less than 3000 IU per day , you may need that just as a maintenance dose. depending upon your physiology. You won't know until you make those measurements I have described. To my mind , you should take at least 2 doses of 20000 per week , spread out evenly.
It is often cheaper and easier to get your own gel caps. Like I said above Amazon etc have lots. Try and choose a reputable company.
Often you will find doctors reluctant to change their prescription at the behest of a patient, particularly concerning Vit D , around which there is a bit of a controversy. To my mind , you will be better , supplementing daily. The reason for that I have explained in some other posts, in greater detail. But in summary, all the while your blood level is below 100 , your liver converts the D3 that you take ( i.e.your supplement) to 25hydroxyD3 blood plasma very quickly. Your body ( your cells - the vast majority of them ), require D3 as well as 25hydroxyD3 for optimal functioning. The half life of D3 in your system is 24Hrs, so within 3 days it has practically gone and been converted to 25hydroxyD3. So with your current regime , for half the week you have low D3. This is better than nothing, it seems to me that for years you have had practically no D3 available to your autocrine system.
When will you feel better ? You must give it a chance to work, we have found used metabolites of Vit D , in the brain , we know the cells there use Vit D , many people report better mood, less anxiety etc etc, when their D level goes up.
With regard to sunlight on skin. We know that sunlight does produce beta-endorphins in skin , that has painkiller and anti-depressant properties, also nitric oxide , a compound that has effects upon the cardio-vascular system, reducing blood pressure. It is no surprise that sunlight makes you feel good. Just don't overdo it , don't burn , ever. Your body can make 10,000 to 20,000 IU of Vitamin D in less than 1 hour in strong sunlight. This fact alone should lead us to realise that small doses , like 400 IU , often recommended ,are not likely to be all that we need. Evolution would not make what we don't need. We evolved in strong sun , over millions of years. It is only recently that we have avoided sunlight , worked indoors, used suncreams etc etc. Sunscreen, SPF 15 and above prevents Vitamin D manufacture in skin if used strictly as described on the label. It absorbs UVB. Our ancestral forefathers had vitamin D levels of about 120 -140 . Outdoor workers, eg lifeguards , farmers etc that are regularly exposed to sunlight do develop those levels , even today. Not so much in western societies, which tend to be at higher latitudes, with indoor lifestyles. It is important to realise that internally your body is hardly any different to cavemen , 25000 years ago. Evolution is a very slow process, we need to ensure that our bodies get what they need for best health.
You have mentioned that you are vegetarian. So your food will have very little vitamin D . perhaps you do choose some of the specifically fortified foods but they only contain very little. Eggs contain just 40 IU each. Fruit and veg none. Cows milk none. Cooking oils none. Nuts none. Honey none. It is important that you get enough somehow. Have you had your Vitamin B12, checked. In some countries below a level of 500 is treated as a deficiency. In this country 180 is considered just about ok and so is often not treated. Have you seen your blood test results. ( You are allowed to see them ! ) You, maybe, should look at them , and make sure that you are not very low on other Vits. Often Vit D deficiency goes hand in hand with low B12, folate, iron , and sometimes thyriod. You should try to check that you are consuming enough magnesium, which is a co-factor or Vit D.
whew ..... Is that of some further help. ? Hope so
best of luck.
I thought I’d give you all an update - especially you Better.
Today I visited the GP who first ordered the Vit D test that discovered my low levels. I took with me a couple of different examples of NHS & NICE guidelines that showed that I had been prescribed too low a dose.
To cut a long ranty story (that my OH has already had to listen to!) short; I really, honestly believe that I could now know more about Vitamin D then they do (and you DEFINITELY do Better!). I was really surprised (and disheartened!) to be told that upping my vitamin D levels wouldn’t have any affect on my energy and various other bits of misinformation.
I’ve now decided that I need to go it alone and decide on my own dosage of supliments that I should be taking. My GP might not think that it’ll make any difference, but I’m determined to do whatever I can to see if it does! I’m entirely willing to accept that it might me psychosomatic, but I honestly do think that even the relatively low dose that I’ve been taking for the last three weeks has made a bit of a difference!
Bettertobehealthy - if you don’t mind me asking for a little more advice? I have another four weeks of 20,000 Vit D to take. I had thought that I could continue to take one a week, but also take a high daily dose every day alongside it. Can I ask if there is a particular dose that you would recommend for that? I’ll then get a private test to check my levels in a couple of months.
Hi fairy !
of course I don't mind.
Bearing in mind that you have said you have had some food intolerances , then there is just a possibility that you do not absorb lipids , as well as you might, then I would say the most certain way that you can make sure you get sufficient Vit D , is to take an oral spray.
Of course, there is still quite a high likelyhood that you would absorb , lets say, gel caps , with Vit D dissolved in oil, within the gel cap. Gel caps are the cheapest... have a look on amazon etc. Choose a reputable company.
Also bearing in mind that you are quite severely deficient , then I personally would take about 6000 IU per day oral spray , every day , until I had a blood test , to determine my blood level, THEN decide what to do. You are looking for a level around 140 , perfectly ok , if it comes back at 160 , these are all within the bounds of normal human responses. Even levels as high as 220 , have been found , just from sunlight , in some people.
In one sense , it is not critically important what doses you take , as a short term loading regime. What is critical , is that over the long term , you absorb enough such that your Vitamin D levels are at optimum for you. Taking a couple of extra 20,000 IU tablets , more or less won't make much of a difference.It won't harm if you take them. I would suggest that you should try and get at least some sunshine on your skin , even if only for a few minutes. Don't burn . The reason for that suggestion , is that there are at least 8 compounds made in your skin , by sunlight , (UVA and UVB , blue and red light) that we do not really know what they do . I have mentioned beta-endorphins, nitric oxide which we do know about.
For instance, a country, like say, Gabon , on the equator , has essentially no multiple sclerosis , the Shetlands is one of the world's worst for that particular disease. The same can be said for many diseases, it appears that latitude, which determines UVB irradiation , may very well be a factor.
As a sensible measure , when you have been taking Vit D for a month or two or three, , then I would just check blood calcium is normal. I do not know the result of your many blood tests that you mentioned above , so I am assuming they do not indicate any reason to suspect hypercalcaemia. It is very unlikely , but , a sensible check to make. Just so you know , Vitamin D allows your body to regulate your calcium absorption to your exact requirement.( Assuming you are consuming enough in your diet)
Low vitamin D , could, in certain circumstances, hinder that regulation. This may very well be one of the reasons for some of your symptoms.
Whilst I cannot guarantee that higher vitamin D levels will be the "cure" for all your problems , it will undoubtedly help you. Your body evolved to have higher levels , all the science that we now have tells us that your level of 20 nmol/L is likely to have deleterious consequences.
Best of luck .
Any more questions then get back to me !
Thank you, once again, for all of your advice and help.
I’ve been looking into all of this LOTS since starting this thread. I’ve been feeling so poorly recently that I’ve really grabbed onto this as a positive thing that I might be able to do to help myself.
In my research I have joined a couple of Vitamin D Facebook groups. They’re pretty full on and very specific about taking at least 10,000 of D3 a day as well as 500 of Magnesium and Vit K as well. To be honest, I’m finding it all really overwhelming and I’m now paralysed about making a decision in case I make the wrong one! These groups seem to suggest that it’s dangerous to take the D3 without the other “co factors”. They also talk about only using specific brands (although I don’t think they do that because they’re benefiting from the sales - they’re all different for the different vitamins) and the fillers in some brands being dangerous.
I’m reluctant to take extra things unless it’s warranted, a) because I hate the idea of putting potentially dangerous things into my body and b) I’m not in the position to be spending that amount of money unless I need to.
I would really respect your opinion on all of this. I’m aware that those kinds of groups can get a bit evangelical and I’d really appreciate your (apparently!) clear thinking.
Honestly - I’m usually really clear headed and good at researching things but this whole thing has my brain fog sky high!
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