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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:
icyfront · 19/02/2017 21:44

It might be of help to others if I charted my vit D test results:

Oct 2015: 60 nmol/L

I started taking Vitabiotics 1000 IU, two tablets a day, i.e. 2000 IU.

May 2016: 160 nmol/L

I dropped down to one tablet a day during the summer, then went back up to 2000 a day in September.

Feb 2017: 133 nmol/L

I don’t have the kind of physical symptoms that others have mentioned, but I have suffered from low mood for a long time. I did notice a difference once I started taking vit D towards the end of 2015, and I spent most of last year feeling very much brighter. But I ended up with stress towards the end of the year and had run out of vit D tablets for a few weeks, and I’ve only very recently got back on an even keel. That might account for the drop in my level.

I think vit D used to be a “forgotten” vitamin, and it’s only recently that more research is being done. And Bettertobehealthy has been keeping up with that research and passing on those findings to us here, for which I’m extremely grateful.

I have a review appointment with my GP in a couple of weeks, and I’ll be taking my vit D printouts with me. GPs, of course, can’t be expected to keep up with all the research on all things, so it’ll be interesting to see what he thinks of those test results.

FOFONAR · 20/02/2017 18:47

Thank you BTBH, I appreciate the time you have taken to reply.

Randomly hips are a lot less painful today but feel very down instead. It does hurt to press bones but not excruciating. I'm not sure if it would hurt like that anyway???

flutterby77 · 02/03/2017 08:54

I've just found out I have osteopenia due to a no trauma fracture and so they ran some bloods following my dexa which showed I was also vit d deficient. Osteopenia is probably due to prednisolone about 10 years ago. I live in Australia and we are in summer so I should really get plenty of sunlight. I've been given a oral shot of vit d yesterday which the GP tells me is equiv of 100 tabs. I'm having the same the next two months and then starting ongoing treatment. I feel great today, could it really have that much of an effect? I feel like my mind is clear and I am awake!

Bettertobehealthy · 02/03/2017 15:26

flutterby One of the causes of osteopenia can be long term Vit D deficiency , whereby excessive bone remodeling/turnover is prompted by high Parathyroid hormone. Higher than normal parathyroid can be prompted by low calcium absorption in the bowel , ( i.e low consumption of calcium OR low vitamin D ). Another cause of osteopenia could be primary hyperparathyroidism, i.e. the parathyroid gland being over productive when not required.

Your high oral dose of vit D ,  was most probably  Vit D3 ,       which is known to regulate the gene  which enables the conversion of  tryptophan ,   to serotonin.   If you were deficient , then maybe this process is now being enhanced. Higher levels of serotonin will improve your mood  etc.  

          Try to ensure that your levels of Vit D  are maintained  by <strong>Daily</strong> doses,     this is better , from the point of view of gene transcription.  So , when your loading dose regime is finished ,  smaller daily doses are more advisable , rather than weekly or monthly bolus doses  ... in my opinion !  Try and keep your level , at least above  100 ,  preferably  120 - 140 ,  nmol/L .  

                           Bones are comprised a protein matrix ,  with mineral deposits to give them strength and density.   It has been shown , in research papers , that in order to rebuild bones ,  it is likely that you will need to consume enough protein , to maintain the health of the rest of your body ,   muscles etc ,   but in addition  enough protein to enable bone rebuilding.  At least  1.2 gram  per kilogram  of body weight  should do that .  Currently , recommendations for  0.8 gr  per kilo ,  will likely not be enough. 

   Well ,  it is a good thing for your future health that you have found out what is happening ,  that your Vitamin D levels are low ,  even in your sunny climate. From now on , you can keep a close eye on them. It will help your overall health  to maintain  a level as suggested above.       IF  you find that you have difficulty absorbing by capsule or pill,   you should consider sublingual spray , which will be absorbed more easily ...bypassing your digestive system.

best of luck, 

BTBH

BestIsWest · 02/03/2017 20:06

BTBH. Glad to see you drawing attention to primary Hyperparathyroidism.

I was diagnosed with this after breaking a few bones and discovering my vitamin D level was 8. Further tests revealed very high levels of calcium and parathyroid hormone in my blood.

It's caused by a benign tumour on one of the parathyroid glands. The cure is surgery to remove the tumour - usually just an overnight hospital stay.

The symptoms are many fold - brain fog, tiredness, bone pain, aching muscles, digestive problems, osteopenia or osteoporosis.

I belong to a group campaigning for improved diagnosis of pHPT - many doctors think it's much rarer than it actually is and many are unaware of the symptoms.

More info here website

And there's a very good Facebook page - just search Hyperparathyroid uk action4change.

Sorry for the hijack

flutterby77 · 02/03/2017 20:48

Thanks for the reply, my vit d level was 33 and yes it was vit d3 I was given. Calcium levels were normal when tested. The prednisolone was for ulcerative colitis which I understand now can also cause calcium and vit d absorption problems. My vit d was a bit low but ok at the beginning of my twin pregnancy 3 years ago but I don't think I was ever retested although I took ostelin throughout. Is there a test for parathyroid I should ask for? It could be an explanation due to my history of ibd.

Grumpbum · 02/03/2017 20:51

I take 40000iu once a month and calichew D3 daily

Grumpbum · 02/03/2017 20:53

And my PTH was low but improved with improvement of my vitamin D level I have osteoporosis confirmed

TheDonald · 03/03/2017 07:49

Interesting thread. Thanks.

I went to GP last week complaining of achy joints, stiff back and generally feeling low and tired. It's my knees that are the worst. They are sometimes really painful, other times just creaky. She did a range of tests and my vit d came back at 36.

She prescribed 10,000 dose twice a week for 6 weeks, followed by a maintenance dose. She wants to test my calcium levels in 4 weeks.

Could a level of 36 really be causing these symptoms? From reading this thread and googling it doesn't seem that low.

Bettertobehealthy · 03/03/2017 13:51

Yes flutterby ,
it is a possibility that you have had raised PTH hormone for long periods. Indeed ... it is likely that your parathyroid hormone ( PTH) has been in the upper quartile of "normal", or somewhat higher,which could occur with Vit D deficiency. ( Because Calcium absorption might be limited due to the Vit D deficiency.)

  It is unlikely that you have <strong>primary</strong> hyperparathyroidism , because your calcium level is as it should be ( as you have reported here. )  Primary Hyperparathyroidism  would result in excessive blood calcium, with some of the symptoms as described by <strong> BestisWest</strong> above. It is an endocrine disorder .... i.e.  most likely  not you  !    

                    It is a possible scenario, that over the years , whenever you were unable to absorb sufficient calcium from your food , your normal parathyroid function would " kick in "  ,   raising your PTH level ,  causing  your bones to  donate calcium to your blood as required.     This is a  normal "compensatory" reaction of your body. Your blood calcium  must be maintained at a constant level - to keep  heart, muscles, nerves etc working correctly. Your endocrine system does that, and yours seems to be working fine !

    For yourself ,    <strong>IF</strong> you have absorption problems, such that you cannot absorb much vitamin  D or calcium in your food very well   i.e.   IBS,  gall bladder, bile salts, Coeliacs, Crohn's , or other gut maladies,   ,  OR  you limit  your calcium intake ( Dairy Free ? ) or vegetarian ?  then this could be the reason that your  PTH rises. * See below

As you can probably see , it is difficult to explain all this in a few lines of chatroom. Suffice it to say , you are best served by having a "good" Vitamin D level, above 100 nmol/L , making sure that you have sufficient calcium in your food , such that your Vit D , enables your enterocytes ( gut cells ) to absorbs that calcium , when it is required. That is one of the most important functions of Vitamin D , it enables your body to regulate your absorption of calcium. Which is the most required and common metallic element in your body. Also , make sure you consume enough protein , to maintain or improve your bone density. As I mentioned previously above.

 You asked about measuring  parathyroid hormone ,   YES ,   it is possible.  Your GP  is likely to baulk at the suggestion ,    it is something an encocrinologist might do regularly ...!       many people with Vitamin D deficiency , or insufficiency , will, in fact, have a PTH level in the upper quartile of "normal", prompting their osteoclast cells ( bone cells ), to deliver bone  calcium to their blood.   Your parathyroid system seems to be working correctly  ! 

     That is one of the reasons , that osteoporosis, osteopenia and osteomalacia are common nowadays.  Vit D  deficiency or insufficiency reduces our ability to absorb the calcium that we need

In a person with a healthy bowel, a blood level of over 80 nmol/L of Vit D , allows calcium absorption with maximum efficiency, however many other beneficial effects occur at above 100nmol/L

Hope this is helpful

BTBH

PTH rises and lowers according to the calcium concentration in the blood in a feedback loop.

.

Bettertobehealthy · 03/03/2017 14:37

grumpbum ,

                           Did you mis-interpret your numbers ,   ?   I assume you meant that your  parathyroid is going <strong>lower</strong> , not higher.      As long as it is in the  "normal" range ,   but at the lower end ,   that means your body is not compensating for lack of absorbed calcium.  i.e. you are getting sufficient calcium from your bowel. 

The higher your parathyroid hormone ( PTH)   , the more likely you are to break down bone to release calcium into your bloodstream.  

It may be advisable to take note about those things I mentioned to <strong>flutterby</strong> above. i.e.  Try and keep your Vit D above  100,  eat plenty of protein ,   at least  1.2 gram per kilo of bodyweight .  

Although you are taking on average about 2000 IU per day , you are potentially not optimising your vitamin D3 plasma level throughout the month. i.e. By taking that bolus dose. ( 40,000 IU monthly ).
You could possibly change that to daily say 1500 IU , or alternatively every 2 to 3 days, take, say, 3000 IU which means your body will have the parent D3 compound perfusing your body continuously. Also continuing with your calcichew will maintain your calcium ingestion.

hope this is helpful.

BTBH

Bettertobehealthy · 03/03/2017 16:22

TheDonald

    well ,  good question ,      is your blood  level of  36   out of the ordinary ...??   and could it be the cause of various symptoms that you have. ?

The answer is   YES ,     emphatically.      Let me explain  below . !  

Throughout millions of years of our evolution , as primates, our blood level of Vitamin D, that is 25( OH ) D3 has been around 120 - 140 nmol/L . You will find this level in primates today living a natural , normal life in their current environment. We as humans , homo sapiens sapiens , changed our environment , by migrating from our ancestral areas ( Africa ) to Northern Europe. By migrating North , we reduced our ability to make Vitamin D from sunlight. Our skin is the major source for us , Ultra Violet light (UVB) , in Sunlight , makes Vitamin D , in our skin.

  We evolved from fish , reptiles, early mammals  etc.    Even early bacteria   of  650 million years ago , were using Vit D  in their biologic systems.   We know this because we can examine the biochemistry of those exact same organisms that have survived and reproduced until the present day.  

  We can look at the Vitamin D levels of humans currently living  in that same ancestral environment today  in Africa , living as we did, pastoral,  hunter gatherers and so on .   They have the levels that I mentioned   120 - 140  nmol/L.   
   We migrated from those areas no more than  about  50,000 years ago ...   and we moved into further Northern areas ( Europe) about  10,000 years ago , when the ice retreated at the end of the last ice age.   This change of environment means that we ( as a species ) need to adapt to lower light levels.   We cannot make Vitamin D , in  our skin between  mid - October   and  mid - April. UVB   is not present in  sunlight at our latitudes,  during the winter.  UVB  is the high energy sunlight which produces Vitamin D in our skin.     This  is the reason we have Low Vitamin D illnesses.        In a short space of time ,   just  10,000 years ,   we have not changed our genome ,  we have not evolved sufficiently to cope with such a big change in our environment. Consult an evolutionary biologist ... he would explain  how unlikely it is that our bodies could make such a change ..!  in such a short space of time. i.e. 500 generations.    
    Practically every single cell in your body , has a receptor for vitamin D.     Vitamin D is a signalling compound ,  a hormone ,  which changes the behaviour of cells,  where needed. It will enable cells to fight off invaders,  ( bacterial and viral infections ),  it can prompt cells to commit suicide  ( Apoptosis )  if their  DNA become damaged , which may otherwise lead to cancers.It  regulates the growth of cells, in the foetus,  etc.   

Your level  of  36  ,   is roughly  1/4   the level that your physiology evolved to have over millions of years.   In other words ,   you are likely to see consequences.   And yes ,  medical advances are now showing that this is indeed the case.  

 It is quite difficult to accept this thesis ,  and many , in the medical profession don't ....yet,  particularly government committees    However ,   we now know ,  conclusively that there are many diseases that are associated with  Vitamin D levels lower than the optimal described above.  

 It is sunlight on skin ,  that we are missing.    If you are white ,  one of your ancestors , about  10,000 years ago had a genetic mutation ,  resulting in the production of less melanin. This enabled you to utiilse more of the feebler light at more Northern Latitudes. Melanin is a sunscreen. That is why Northern peoples are white. It also means that ,  following that mutation ,  we cannot just expose ourselves to intense  sunlight  and burn ourselves .      

   There is quite a bit more to explain , but that should be enough to start with .. ! 

My advice would be ..... If your blood level of Vitamin D is 36 ...  try and get it up , to at least 100 , preferably  120 -140 ,   your physiology is attuned to that level.  

Good luck

BTBH

FOFONAR · 03/03/2017 17:32

Has anyone found the large vitamin d supplements have changed their periods? First one since being on the tablets has been noticeably lighter though I've had a lot of headaches and some nausea.

I told my dh I was surprised at the difference and his first thought was the vit D.

NolongerAnxiousCarer · 03/03/2017 23:17

Hi,

I'm recovering from PTSD and associated anxiety. I'm doing well and mentioned to my GP that the main remaining symptom is fatigue so she did some blood tests. It's come back that my vit D is only 19! This really suprised me as I take a preconception vitamin which is high in vit d and also a calcium, vit d, magnesium and zinc suplement. I've got a prescription for 20,000 unit capsules to be taken twice a week for 7 weeks and my GP will monitor she then talked about a maintanance dose once its above 40.

I burn really easily so I do tend to avoid going out in the sun uncovered or without sunscreen, will have to rethink the ballance when we get some sun this year.

Footle · 04/03/2017 14:47

My GP has lost interest in my vit D levels. She's not offering any monitoring , just said to take 'the recommended dose' on whatever bottle I find on the supermarket shelf. I'm taking 2x1000iu a day at the mo, and my leg pain is back.

PinkCrystal · 04/03/2017 14:53

Calchichew.

Footle · 04/03/2017 15:16

Thanks, PinkCrystal. How much Calchichew?

PinkFlamingo545 · 02/04/2017 20:43

Fultium-D3 3,200unit capsules

MiniMum97 · 06/04/2017 22:53

General I would take 5000iu everyday for 2 months and then every other day for 2 months. You need to take D3 and preferably take them with vit K2 mk7 which directs the D3 to the bones.

I take these and they have got my vit d levels up to almost 100.

Get retested after 4 months and if it's up to about 100 you can reduce to 5000iu twice a week. Too much vit d is toxic so it's important to keep an eye on the levels.

I take these ones...
www.oxfordvitality.co.uk/vitamin-d3-vitamin-k2-mk7-tablets

Make sure you take the D3 with some dietary fat as it aids absorption.

Mehfruittea · 06/04/2017 23:08

I'm vit d deficient. I've skimmed through the thread and am book marking to read in detail when I'm not so bloody tired.

I'm also anemic and have regular iron infusions. My vit d level was 6. I was prescribed hux d 20,000, 1 per week. I carried on like this for about 3 yrs and got my levels up to around 100 consistently by taking it 1 per week.

My GP changed this and got rid of hux d recently when I was prescribed forceval as am deficient in a few minerals. The vit d dose is now 400 iu per day. Is this going to be enough to replace the hux d? My GP said to do a blood test in 6 months to check my levels. But it doesn't add up to me. Confused TIA

autumnne · 06/04/2017 23:10

I'm on a three month "loading dose" of 3200 D3 and then I am to maintain it with OTC levels

autumnne · 06/04/2017 23:10

Current level is 30.1

autumnne · 06/04/2017 23:11

And I have to add, I am six weeks in and the exhaustion hasn't gone away... Hmm

helenfagain · 07/04/2017 12:54

800iu per day. Not sure what my level was but I feel much better since taking them.

cookerybookaddict · 08/04/2017 18:30

I am so pleased that I stumbled on this thread a couple of weeks ago - it prompted me to retest my 13 year old DD's vitamin d levels using the NHS lab mentioned above. DD has suffered from fatigue, lethargy and low mood for over a year now. Our GP ran a full set of blood test several months ago and told us everything was fine. She commented that her vitamin D level was on the low side but didn't offer any other advice. We've just received the results back from the NHS lab in Birmingham and it turns out that DD's vitamin D level is just 34. I'm really hoping that this is the cause of her tiredness.

We have a hospital appointment next week to talk about her fatigue and I will certainly mention her test results. Reading through this thread and various others it sounds as though the amount of vitamin D that people are advised to take varies quite considerably. If anyone had a level similar to what my DDs are (ie around 34) I'd be really interested to know how much they were advised to take.

We do have some Wellteen vitamins which DS takes (DD has always refused to take them!) which contain 800iu of Vitamin D, however I think that dd may need more than this at least for an initial period?

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