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If you are vitamin D deficient, what have you been prescribed?

184 replies

whowantsadog · 30/01/2017 11:54

I've recently found out that my vitamin D levels are so low that it's not possible to get a reading on them (apparently below 30 doesn't register?) However, when I've collected my prescription they seem a much lower dosage on prescription than what I bought last week in Sainsbury's, and on googling it seems people are taking doses of around 5000iu for similar deficiencies. Do I need to double up? (Picture shows prescription on left and over the counter on the right).

I'm also hoping that you're going to tell me that getting your vit D levels back up transformed your life, helped you drop 2 stone and stopped you feeling 90 years old? Smile

If you are vitamin D deficient, what have you been prescribed?
OP posts:
QuestionableMouse · 03/02/2017 22:54

Y

QuestionableMouse · 03/02/2017 22:55

Yep. If i remember I'll get a pic of the tub in the morning. Think they were a quid from the chemist.

IvorHughJarrs · 03/02/2017 23:12

I have the information sheet here from our GPs.

It says that if your blood levels are between 30 and 50 you have insufficient Vit D, below 30 is deficient
The treatment is prescribed Hux-D3 20,000iu capsules, one a week for insufficiency, two a week for deficiency, both for 7 weeks.

After this you should buy an over the counter supplement of 800iu or more each day
After 4 weeks you should have a blood test to measure calcium levels and after 12 weeks a test for Vitamin D levels and various other things

I got a huge bottle of capsules at Costco but noticed afterwards that they are 2000iu each so am relieved to see they are not too high

AndNoneForGretchenWieners · 03/02/2017 23:17

Mine was really low and I was prescribed a course of 30,000iu daily for 6 weeks. My GP said I had the levels of a kidnap victim Grin following weight loss surgery. I now take the standard vit d and calcium supplements along with a multivitamin.

Footle · 03/02/2017 23:18

It's extraordinary how much the treatment protocols differ within the NHS.

Footle · 03/02/2017 23:20

Gretchen, are your levels monitored? How often?

emwithme · 03/02/2017 23:21

Level was 6.5. Serious amounts of supplementation (starting on something like 40000iu then reducing in steps), now on a "maintenance" dose of 800 iu (I think...the box is in the kitchen) daily. Level tested in Autumn at 122. It took 18 months to get levels up in which time I managed to come off daily tramadol+codeine+ibuprofen+paracetamol (and still in pain), become active again, and go back to work after four years off sick. (I have EDS so there's probably some malabsorption issues going on too, but in the big scheme of "what's wrong with me" then it's nothing too major!)

The doctor has kept me on the prescribed tablets as DH and I are now TTC, otherwise I'd be on to OTC supplements. They want to keep me as healthy as possible!

Broken11Girl · 03/02/2017 23:37

I'm on 3200 iu / 80 mcg a day, to get retested in 3 months. My level was 40 ish I think. Hoping to feel less exhausted and achy.
It seems to vary a lot, but yes op 1400 won't do anything. I'd go back.

AndNoneForGretchenWieners · 03/02/2017 23:40

footle they are monitored annually now, it's been 5 years since my surgery and 3 years since the vit d deficiency was picked up. Initially I had to go back every 3 months but after a couple of years it dropped right down.

katymac · 15/02/2017 17:11

Just got my results back mine is 157, DH's 129 & DD's is 34

So I guess I need to nag DD to take her vit D a bit more

DH & I were classed as adequate so I guess supplementing at the rate we are is OK

Should I retest later in the year to next year to be sure?

Bettertobehealthy · 15/02/2017 19:32

hiKaty ,

           congrats ....       you and your  DH  ,   are  a member of a very select group in the UK,       the Vitamin D replete group.   !!    

 From memory ,   I think you are using  a 3000 IU daily   sublingual spray for both of you.       It is an excellent strategy to maintain a healthy level. Even if you do have intestinal absorption problems ,  you avoid those problems by using a spray. Many people that present with a very low level could have those type of problems. 
                 Animal products do have some vit d, ( generally in the fat  - but  less in the muscle ), normal digestion should pick up some, resulting in a background level , even if you get no sunshine , or take no supplements.  IF  a person seems to have very very low levels ,   and they are not vegetarian ,  then some kind of absorption problem might be suspected.   I stress might. Those people may possibly benefit more from sublingual ,   rather than capsule form.      However ....      it makes so much  sense to  test your blood level,   say yearly ,  to find out how you are doing.  Particularly  late winter or early spring time. 

  Yes ,   you are right ,    your  DD's level is not good.     If she does supplement ,   try and make sure that she continues , with a regular dose,  it is much better than stopping and starting.        Have a look at  Prof Veith's lecture ,which I posted previously, on this thread.    remember ,    dosing depends upon weight.   A small child will require less than an adult.  

   Best of luck,       

BTBH

PS. If you have been taking the spray for over 3 months say , then you level should be pretty much in equilibrium, your level might go up a bit , in Summer , if you do some sunbathing in UK , if you go overseas , in much stronger sunlight , then probably even more. Don't burn , though. At your levels, your liver reduces the rate at which it converts D3 to 25(OH)D3, i.e you blood level will not rise by 25 nmol/l for every 1000 IU , it will be less,

katymac · 15/02/2017 19:49

I get prickly heat in the sun, so generally avoid (& I'm allergic to sun cream) wearing loose long clothes. I have very severe IBS & I am deficient in other stuff (B12, iron, folate, zinc, magnesium, low in calcium) so I do think to some extent it's absorbtion

DH is Jamaican & on Doxycycline so avoid the sun like anything puts on tonnes of sun cream and wears long sleeves/trousers in strong sun

DD is 19 but spends 8-8 indorrs training so no sun at all! plus being mixed race so with darker skin - I will just nag more

We are all on the 3000 spray - should DH & I go every other day in the summer or just stick with daily do you think?

Bettertobehealthy · 16/02/2017 12:25

katy

there should be no harm , just carrying on as you are throughout the summer if you are all so weakly exposed to sunlight. If you think you are getting quite a bit of direct sunlight , maybe in july , aug etc , then dropping a day or two of spray per week would be no harm either.

             Have you seen todays news... ?        Vit D prevents colds .... and UR Infections.         FINALLY ,   the  word seems to be getting out in the mainstream media.     They have said in the report , if you read it fully ,   it is the daily dose that is important.   This daily amount allows fresh vitamin D  , to perfuse your body ,   before hydroxylation in the liver.  It is the parent compound D3 that is required by the autocrine system , to read genes , in all those cells that perform so many functions in the human body.
katymac · 16/02/2017 13:13

I know it'll make nagging DD easier Wink

We are obviously challenged as a family Hmm

Thanks

FOFONAR · 17/02/2017 20:35

I'm in 20000 iu 3x a week for 10 weeks then a daily maintenance dose of 800iu after that. Lots of bone pain, thighs, lower back and hips. Lingering cough too. Dizziness is first symptom to improve but still so so tired. Nice to see it in the news and so pleased gp tested me for it, I thought I was anaemic.

Purplefrogshoes · 17/02/2017 20:40

I take 2400 iui per day. I order it from bigvits online. That is the dose I was instructed to take by orthopaedic consultant

littleducks · 18/02/2017 10:05

Ok. I'm in the need to start supplementing group. I had blood test (kids tested as deficient so thought i should too) got message to pick up prescription. It was at reception so don't know levels and haven't spoken to Dr. I have been prescribed vit d and folic acid (had mini heart attack that blood test showed I was pregnant but googling seems to suggest can be related deficiency).

I have been prescribed
20,000 unit Filtium d3 capsules 2 per week for 7 weeks

5mg folic acid daily for 3 months

Each item on a separate script so was hoping I might be able to buy online cheaper?

Bettertobehealthy · 18/02/2017 17:44

hi littleducks ,

  Have a really good look at the   <a class="break-all" href="//www.vitamindassociation.org" rel="nofollow" target="_blank">www.vitamindassociation.org</a>  website.  On the front page you will find  a lecture by  Prof Hollis, Medical University of South Carolina  ,  concerning  Vit D , pregnancy and breastfeeding.     He is one of the world's foremost experts. You will find many pages of valuable advice and information on that site.   

    Having found that you are deficient , at an early stage of pregnancy means that you have the opportunity to greatly enhance your health, particularly throughout pregnancy and delivery . You baby's health  whilst developing in the womb will be helped,   in later life your baby's chances of developing autoimmune diseases are thought to be reduced, your babies chances of developing quite a few other  conditions are thought to be reduced. ( Schizophrenia, Diabetes etc etc.  ) 

              You will see that  Prof. Hollis'   protocol is 4000 IU  per day , throughout pregnancy. Then,  if  breast feeding ,  6000 IU  per day.    Your milk will then have a replete level of vitamin d for your  infant.  That would be  approx  400 IU  per litre of milk.           That level of  400 IU  per litre  is found in humans , living an outdoor , healthy , ancestral lifestyle.  They do not need to supplement their babies with Vit D.  Here in the UK ,    mothers are generally much lower in Vit D,  and so their milk contains just  25 IU  per litre.  For this reason , the government recommends  that breast fed babies receive about  300 IU  per day. In the USA  the  recommendation is  400 IU  per day  , from birth ,  for breastfed only babies.    

Professor Hollis has shown , with several, placebo controlled , randomized trials , that being replete with Vitamin D , your chances of developing pre-eclampsia will half, the chance of needing a ceasarian will roughly halve, your chances of developing bacterial vaginitis will be about half, plus other benefits too..!

              You are being treated by your doctor ,   so it may be best to talk to him about any changes that you might intend to make with the compounds you intend to take.   Prescription medicines are very tightly controlled. If you decide to change to  "over the counter"  preparations , please make sure they are of good quality.   If you took  6,000 IU per day, that would be equivalent to  your prescription of 20,000 IU @ twice a week.( to a close  approximation).    
   Vitamin D researchers , in general would prefer daily dosing , rather than intermittent bolus dosing.  Daily dosing more closely replicates the way  humans received their vitamin D throughout  their evolution ,  in sunny  Africa.     Have a  look at the lecture I posted  earlier on in this thread.  (Prof Veith ,) where  this is explained. 

          Your folic acid is very important as well  !!    However ,   there are probably more knowledgeable people on here mumsnet    to talk about that etc. 

Best of luck with the pregnancy.    

BTBH

littleducks · 18/02/2017 17:58

I'm going to look into this all properly now but just to be clear I'm not pregnant! (Can you tell how freaked out the idea of dc4 makes me Shock)

Bettertobehealthy · 18/02/2017 18:00

Sorry , typo , wrong address up above,

<a class="break-all" href="https://www.vitamindassociation.org/" rel="nofollow" target="_blank">www.vitamindassociation.org/</a>        .   That will get you into the Vitamin D Association  website. 

BTBH

littleducks · 18/02/2017 18:03

Feel bad you typed all that out thinking I was but hopefully someone will be along who it will benefit.

My ds2 was born with vit d defiency so I'm sure I had it all through that pregnancy.

I thought folic acid was only in pregnancy but apparently useful if you have pernicious anaemia. I think I will go back and ask for copy of blood test numbers to see my results. You have to pay 50p for a print out and I didn't have cash on me at the time.

BlueSofaPinkLamp · 18/02/2017 18:11

My level was 32 and I was put on 40,000 units once a week by an endocrinologist, for 3 months. I now take a double dose of an over the counter tablet every day for maintenance.

Bettertobehealthy · 18/02/2017 18:19

littleducks Ah well, ... like you said , any pregnant woman in the UK , should have a look..!

It is very important information, it would save much illness and preventable conditions. AND save the NHS a lot of money. Vitamin D supplementation is so cheap. About £12 per year if you buy capsules from Amazon etc.

Have a look here , lots of info , experiences , discussion about Vit D !

www.mumsnet.com/Talk/general_health/2421492-Vitimin-D-can-it-have-this-effect

.

FOFONAR · 19/02/2017 09:07

Any idea how long it takes to get levels back to normal. Bearing in mind I've completed one week of a ten week course and don't know my blood test level. Slightly impatient I know but the bone and back pain are hard with a busy job on my feet all day and two dc.

Bettertobehealthy · 19/02/2017 18:05

FOFO ,
IF your pain comes from your bones having de-mineralised because of Low vitamin D with consequent inability to absorb sufficient calcium, then it will take quite a few months for great improvement to be made. In this instance you will need to rebuild the protein matrix of the bone , and deposit the calcium/phosphorus required to build strength,in that matrix. You should make sure that you are consuming sufficient protein, at least 1.2 gram per kilo of your bodyweight. Also try and make sure you are consuming plenty of calcium, magnesium etc. i.e. a good diet with plenty of veg and dark greens. That condition is called osteomalacia. If you press on your sternum and /or front of shin bone a few inches below the knee , pain here might be an indication that is indeed your problem.

    ALTERNATIVELY ,       you may not be so severely affected ,  if you have not been deficient  for a long time ,  or you have been consuming plenty of calcium. In this case , you should respond a bit quicker ,    Vitamin D has many effects on muscles and other parts of your body ,   it does  affect the regulation and operation of over 2000 genes ,     about  10%  of your total.    A deficiency will have many effects ,  by returning to a normal level  many of these effects can be mitigated, some quite quickly.    

 You should ensure that after your course has been completed ,  that you carry on absorbing sufficient vitamin D to keep your blood level up.   At least  75  is recommended,     and many vitamin D researchers would say   between  100   and  150.       To do this you will probably need   3000 IU   to   5000 IU  per day.      It is a really good idea to check that  your supplementation is working ,   say after  6 months ,   have your level measured.  If it is not where you want it to be ,   then take further action.  If you simply stop supplementation ,    after your course ,   then your blood level of Vitamin D  will approximately halve after a further 60 days ,   and then continue to drop to your pre-treatment level, generally within 6 months or so.    That is unless you make lifestyle changes ,  i.e. outside  in the sun  etc , etc.    Food cannot provide much Vitamin D .   Our main source is our skin , and  UVB sunlight upon it.  Don't forget,  you cannot make vitamin D from UK  sunlight  between  mid Oct  and  mid April,  the sunlight does not contain UVB , it is too weak.   Even during our summer , sunlight contains UVB  only during the hours  10 ish to 3 ish.  

   Hope this is helpful

BTBH

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