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Vitamin d deficiency urghhhh

75 replies

tomatopuree · 27/05/2017 21:34

I had a call from my GP telling me that I'm vitamin d deficient. My number is 7. For months I have been exhausted, teary, struggling for words and my bones ache.

I went to her as I thought I might have arthritis (I have a child with arthritis so I believe I knew the signs)

I have been put on cholocalciferol (sp) 20,000 iu x 2 per week.

I have just started them and I have 7 weeks supply then a gp appointment.

Some people have said get a SAD lamp. Has anyone any good stories of using SAD lamps for this?

Totally outing myself. I'm a mum of a toddler so expect to be tired and also a student nurse. Working on placement has been particularly difficult.

My pain levels are huge. It's not muscle it's my actual bones that hurt. So manual handling and also things like drawing up meds using fine dexterity is very uncomfortable and I don't feel as though I can tell anyone for fear it makes me look like I'm wanting it easier....

OP posts:
SuburbanRhonda · 29/05/2017 10:15

And uveitis Sad

OrlandaFuriosa · 29/05/2017 10:31

Op, complete sympathy. I don't know what my score was but I too had the same symptoms and prescription. I'm now on a booster. Unfortunately we -dr and I-think I've got ME/CFS as well, tbh the vit d has made a little difference but not much: it doesn't take away the lagged exhaustion, achey bones, light fever.

But I wish I'd known about the weight issues. No wonder so many Brits are obese: we are all low in vit D.

OrlandaFuriosa · 29/05/2017 10:32

Actually prescription even higher to begin with.

tomatopuree · 29/05/2017 10:38

@SuburbanRhonda It's ok. Just because you are HLA B27+ doesn't mean you will develop any of those conditions. It's just a help in diagnosis if you do display symptoms. Also not all arthritis pose a risk with uveitis. My daughters form of arthritis has such a low risk of uveitis developing that they don't test now for it. But we do know signs if she ever displays anything. 👌🏼. Welcome to the vit d group. It's crazy how crap I'm feeling

OP posts:
SuburbanRhonda · 29/05/2017 11:05

Thanks, tomato.

I've not got arthritis yet (although I've got FAI in one hip and will need a replacement in ten or so years), but had recurrent uveitis during my 20s and 30s (now in my 50s) and my sister, who is also B27 positive, had it too, once so badly that she had to have steroid injections into her eyeball Shock.

Hope you're feeling better once your studies are out of the way. You sound like your doing a fantastic job regardless Smile

Greenshieldstamp · 29/05/2017 11:23

I also agree with Lifeintheslowlane1 upthread.
I'd urge you to ask your GP for Thyroid Function testing & go for the blood tests first thing in the morning.

Vit D, B12 & folate, Iron deficiencies and low Ferritin ( Iron Stores), Coeliac disease etc are all much more likely with autoimmune thyroid disorders (or any autoimmune disorder for that matter).

Good luck OP hope you're feeling better soon.

Puffpaw · 29/05/2017 11:28

You say you have put on weight, may I ask how the weight is distributed? Are you apple shaped, with chubby cheeks and fat around the neck? If so you may have Cushing disease. Dsis had it, took 3 years to get diagnosed as gps just don't come across it. You need your cortisol levels checked with a simple blood test and a referral to an endocrinologist. It caused oesteoperosis (complete with achy bones, which were actually multiple fractures) and severe vit d deficiency as well as menstrual problems. I would strngly urge you to insist on the blood test. If treated early the prognosis is good, my sister has lots of long term problems as a result of it not being diagnosed for so long.

ceecee32 · 29/05/2017 11:36

My Vit D score was 8.
I was given 7 days of tablets and then take one every other week forever.

I went to my GP thinking it was menopause symptoms - I cant describe the aches which felt as if they were deep in my body.
Within the first week the aches had gone, my mood had lifted (I hadn't even realised that it was low) and I felt so much better.

Hope you feel better very soon

tomatopuree · 29/05/2017 11:54

@Puffpaw No. I just put it on around my abdomen. I currently look like a rubber blubber whale. Thanks thought

OP posts:
MyOtherDogIsAPorsche · 29/05/2017 15:19

What an interesting thread - so pleased I stumbled across it. I have a level of 20, so on the low side but not as low as many. Can anyone give me some idea of how much d3 I should be taking to raise my levels and how quickly I might see some results, I would describe myself as lethargic, tired and always a bit flu-ey(?). Never associated it with my low 25oh result so, as I say, really pleased to find this thread and hoping it might make a big difference to me.

SofiaAmes · 29/05/2017 18:23

The Vitamin D Council (US website so blood results are slightly different units than in the UK) is a good source of information regarding Vitamin D. Daily recommended dosage is 2000-3000iu for a child and 3000-5000iu for an adult. If you are dark skinned or keep covered or don't get out much, or are older, then definitely go for the higher end of those numbers. And remember that there are some people who need enormously high dosage because they aren't processing it properly.

I live in Los Angeles, have light skin and spend a significant amount of time outdoors without suntan lotion in the sun and I still take 2000iu to keep myself at adequate levels.

Puffpaw · 29/05/2017 21:17

By apple shaped, I meant fat around the abdomen, skinny arms and legs; the fat neck and moon face (actual description) came later in dsis case and happened so gradually none of us actually noticed including dsis! We only really saw it after diagnosis and when the consultant told us to look at old photos from say 5 years ago. If you are going to ask for your thyroid to be checked (and you really should) it will do no harm to ask for your ACTH to be checked at the same time, or saliva test for cortisol .

Symptoms of Cushing disease include:

Upper body obesity and thin arms and legs
Round, red, full face (moon face)

Skin changes that are often seen include:

Acne or skin infections
Purple marks (1/2 inch or 1 centimeter or more wide), called striae, on the skin of the abdomen, thighs, and breasts
Thin skin with easy bruising, most commonly on the arms and hands

Muscle and bone changes include:

Backache, which occurs with routine activities
Bone pain or tenderness
Collection of fat between the shoulders (buffalo hump)
Weakening of the bones, which leads to rib and spine fractures
Weak muscles

Women often have:

Excess hair growth on the face, neck, chest, abdomen, and thighs
Menstrual cycle that becomes irregular or stops

Other symptoms may include:

Mental changes, such as depression, anxiety, or changes in behavior
Fatigue
Headache
Increased thirst and urination

Sorry to bang on about it, but it is a good idea to rule it out, along with other endocrine disorders. People don't often get low vit d (to the extent you have) without an underlying cause. And gps are rubbish with endo stuff, not their fault they simply don't have time to gather all the info and put it all together.

Puffpaw · 29/05/2017 21:18

Dsis also had 2 lots kidney stones because the cortisol strips the calcium out of your bones. That was about a year before diagnosis.

HappyAxolotl · 29/05/2017 23:59

Actually, posting here has made me think I probably need my levels tested again. I've been quite tired for the last few weeks (but am busy at work), been feeling like I'm coming down with a cold but it never comes to a head and never goes away either, and I noticed earlier I've put some weight on despite being more active recently and my diet not changing.

MadAsFluff · 30/05/2017 00:06

Only read first few posts but have you thought about a test for coeliac disease. Joint pain and tiredness were my only symptoms

MadAsFluff · 30/05/2017 00:12

Read a few more posts- arthritis and eczema ( along with various other auto immune conditions) both associated with coeliac disease as well - and if Vit D supplements are not working could be due to malabsorption. My Coeliac DC and i are on a booster dose of 2000 and then maintenance of 1000.

Bettertobehealthy · 30/05/2017 17:40

Hi tomatopuree ,

sorry to hear about your health problem. Having been diagnosed with a level of 7 nmol/L ( assuming you are in UK ... and using UK units of measurement ) then yes you could possibly be suffering from osteomalacia. ( adult rickets ).

The symptoms you describe would fit , however such extremely low levels of 25hydroxyD3 can, and very likely are, causing other problems for you as well.

    As you probably know ,  vitamin D becomes a hormone in your body ,   it affects, directly and indirectly the regulation of  2000 or more genes. It enables your cells to read those genes and modify the behaviour of every cell in your body , from gut cells, brain cells, white blood cells  , etc etc. It is for this reason that low Vitamin D can have various effects upon bodily functions.  

        Vitamin D  exists in three states in your body ,  parent compound D3 (skin made - or supplement),  25hydroxyD3 ( blood storage form ) and 1,25DiHydroxyD3 , the hormone form.   All three states have important physiologic functions. Your test was for 25HydroxyD3.   

       Your body requires all three varieties to function optimally. Vit D is the only hormone  that is substrate limited  and is dependant upon your behaviour , i.e. diet , sun exposure, supplementation etc. All  other hormones are synthesized by your body irrespective of your actions. 

In the UK , over winter sunlight is too weak to make Vit D in the skin between  Mid Oct   and  Mid April.   This is  just a matter of physics.   The  necessary energy to make VitD  is not contained in the light which does reach the earth's surface. It is UVB radiation  which converts 7dehyrocholesterol in the skin ,  to VitD3  ( parent compound). At our latitude, 50+ degrees,  UVB is absent , for 6 months of the year. It is absorbed by the longer pathlength  through the atmosphere 

In the summer months ,  UVB  is present from about 11  to 3  pm.  Outside these times,  the sun is too low in the sky, the pathlength is longer,  UVB is absorbed,  however UVA  is still present .      IF  the suns elevation is below 45 degrees ,i.e.  if your shadow is longer than you ,  then  you cannot make  Vit D  from that sunlight.!  Again ,  this is simply a matter of physics.     

You asked if a SAD lamp would help your VitD status. The answer is NO. Vit D is made in the skin by UVB radiation, of wavelength 312 nanometre or shorter. SAD lamps do not emit that radiation. SAD lamps emit visible light of wavelength 400 nanometre or longer. They possibly can help mood etc by stimulation of other hormones such as serotonin by acting upon receptors in the eye., which might make you feel better, so they might have a place in some treatments. Nothing to do with Vitamin D though.

 Sunbeds are a different matter,     SOME sunbeds emit UVB radiation ,  to a greater or lesser extent.    So  some sunbeds can make Vit D in your skin. Avoid  high pressure UVA only type sunbeds they will NOT  make Vit D in your skin ,  even though they might promote a tan.    It is NEVER  a good idea to burn your skin  because all UV radiation can cause damage to skin ,  both the collagen structure ( wrinkling )  and  DNA  damage.  The key point is to use the right sunbed responsibly, never burn or overdo it. IF  you do decide to use a sunbed , It is recommended by vitamin D researchers to use a sunbed for no more than half the recommended time necessary to produce a tan ,  i.e.  a half MED dose .   A  MED  is Minimum Erythemal Dose,  which is the dose which would cause a slight reddening of the skin by the following morning. So … never exceed half that time !    twice or three times a week may boost your vit D levels quite quickly. It is recognised that sunlight on skin can produce benefits other than Vit D production. ( See link below -  * ).

Your personal circumstances of 7 nmol/L 25hydroxyD3 could lead to hypophosphataemia , arising from secondary hyperparathyroidism. Vit D deficiency can cause secondary hyperparathyroidism, it is a natural response to low vitamin D , if you consume insufficient Calcium. I am assuming that your doctor measured your calcium level and found it within the normal range ? If your calcium was outside the normal range then primary hyperparathyroidism might be suspected.as bestiswest surmised. IF your medical evaluation by your own medical professionals concluded that your Vit d level is the cause of your problems, by eliminating other causes , then in my opinion , you should try to put it right , but also understand what caused it.

Non vegetarians do consume some Vit D in animal products ,  a background level, depending upon how those animals were kept  and indeed supplemented.  Are you vegetarian?       Oily fish  such as salmon ( wild caught ), contains some ….   Farmed salmon contain very little ,  just ¼  the amount of wild salmon.   Do you consume oily fish ?   

  Vitamin D allows you to regulate the amount of calcium you absorb from your food,   IF  you avoid calcium containing foods  such as dairy ? ,   then you may not absorb enough calcium. Even if you consume plenty of calcium then   Low vitamin D hinders you from absorbing much calcium., leading to high  parathyroid hormone , ( hyperparathryroidism) which instructs your bones to shed calcium into the bloodstream to maintain the correct i.e. normal calcium level , thus producing bone aches and pains. ( your main symptom  -  from reading your posts ) 

Another potential cause of your very low level might be malabsorption. As I indicated previously , food can contain some Vit D and its metabolites which you can utilise. IF however your digestive system does not allow that absorption , then you may develop extremely low levels, even if you are consuming animal products etc. Do you have any gut issues ? , such as gall bladder, bile insufficiency, Coeliacs, Crohn's, IBS, etc. If you do , then that may be an explanation. Vit D in food is to be found mostly in lipids ( fats ) as it is fat soluble. If for any reason you cannot digest those fats , then you may not be able to absorb the Vit D therein. It makes a great deal of sense to ask you doctor to investigate this aspect of your problem. If you find that you do have malabsorption , treatment can bypass your digestive system, from the point of view of Vit D , by either taking a daily oral spray , or using a sunbed, or indeed the sun.

I should mention that Vit d is an essential micro-nutrient , and does not work in isolation to all your other nutrient requirements. Vit D enables the nucleus of cells to read genes, which in turn create proteins in those cells, BUT , each specific cell requires all the other components to build those proteins , etc. That is you other nutrients , you need calcium, magnesium , so dark greens are very important , you need vitamin A , in many foods , you need a whole range of nutrients , so it is very important that you have a healthy balanced diet. Specifically a good variety of vegetables and some fruit. Vit D enables your cells to work with all those other components to promote a healthy body !

Probably the most important thing to consider , is what Vit d level should you achieve. There is quite a controversy at the moment. Latest research has shown that very many of us are at too low a level.  Vitamin D researchers consider 100 – 150 nmol/L   to be optimum.   Just a few years ago  in the UK ,  50  was considered alright.  BUT,  just recently  many in the medical profession  regard  75   as the minimum we should now aim for.     Throughout human evolution ,   our level was  120 -140 ….   For millions of years. It is only in the last few thousand years that we migrated from Africa ,   where Vit D is made by strong sunlight every single day , to Northern Europe,  where we cannot make it  for 6 months  of the year.     Our body is capable of making  1000 IU  in just 1 minute of sunbathing in strong sunshine ,   we can make  20,000  IU ,in 20 mins ,  at which point we naturally stop making it , until the next day .  From this ,  it makes a lot of sense , that we do need substantial amounts for optimal health.  

My advice to you would be to try and keep your vitamin D level at 100 or more permanently , make sure you get VitD3 regularly , either by supplement , sun , or maybe even sunbed. If your blood levels are below 100, your liver naturally converts your parent compound Vit D3 to , 25hydroxyD3 very rapidly , and thus reducing availability to your cells of the parent D3 , which they otherwise would use. This is just a fact of human physiology. If it turns out that you do have a digestive , or other barrier to absorption , use an oral spray , probably at least 3000 IU per day, in order to maintain those levels mentioned. When your blood level exceeds 100 nmol/L , you will start to store Vit D in your fat, allowing your body to use it , say in the case of infection , or other vitamin D resource hungry eventualities. You will be healthier !

In many cases your doctor may not want to , or may be limited in budget,   so , if necessary , you can get additional postal  blood spot tests from this NHS laboratory.  They do charge £28 per test,   if not ordered by a doctor.  They will test for the general public.   <a class="break-all" href="http://www.vitamindtest.org.uk/" rel="nofollow" target="_blank">www.vitamindtest.org.uk/</a>  .    A yearly test around  end of March , early April , will give you a good  idea  of how you are doing.      

If you do have osteomalacia , then it will take a considerable time to re-mineralise your bones , so do not stop your vitamin D treatment after 7 weeks. In my opinion you should aim to keep your level above 100 , permanently. Daily dosing is much more preferable than weekly dosing , which is again more preferable than monthly dosing. D3 has a half life in the blood stream of just 24 Hrs. 25 HydroxyD3 has a half life of about 60 days. In general your body will require 70 IU of D3 per kilogram of body weight. That is from , food, sun, supplements and sunbed , if you use it.

     I have posted quite a lot here on Mumsnet about this vital question of Vitamin D deficiency,   search my nick .  

Also  here  are a few threads which explore Vit D ,  how people felt when low ,    what doses they took,  how it helped etc.  They are a long read , but contain lots of useful information. 

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

www.mumsnet.com/Talk/feeling_depressed/2868907-Vitamin-D-deficiency?pg=1

www.mumsnet.com/Talk/general_health/2841497-If-you-are-vitamin-D-deficient-what-have-you-been-prescribed?pg=1

     Sorry for the length of the post …!     But  I hope it is useful ,  

We need to keep our student nurses healthy, who knows , one day you might be treating me …! Smile

            Best of luck .   just ask me if you need any more information . 

BTBH

*Benefits of sun exposure. Article in Dermato-Endocrinology.

www.tandfonline.com/doi/full/10.1080/19381980.2016.1248325

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tomatopuree · 30/05/2017 18:29

@Bettertobehealthy Grinthank you sooooo much. I'm going to print this out and digest it! I'm in awe that you spent soooo long typing that out for me and I'm very grateful! Please let me digest so I can understand and then offer you proper thanks

OP posts:
Footle · 30/05/2017 20:13

See, I told you s/he would be along to sort you out!

tomatopuree · 30/05/2017 20:17

Yeah problem now is that I'm looking at all the information and if I even suggest to uni why I'm struggling with my essay they are going to ask me to do a blooming reflection on vitamin d deficiency Grin. I will need to be quietly unwell. SmileWink

OP posts:
MyOtherDogIsAPorsche · 30/05/2017 20:48

BTBH - quick question please. Is even a low dose better than no dose or is it wasted if it is not high enough? Thanks.

Bettertobehealthy · 30/05/2017 21:54

myotherdog ,

                               in general Vitamin D effects are dose dependent ,  the greater the number  of  molecules that reach their target genes , in the greater number of cells ,   the greater the effect,  up to a maximum, when your system is replete in Vit d .  
                              Nutrients generally have a 10 :1 ratio in effectiveness.  Going from practically no effect  say from a concentration of 0 to 1 , then a sigmoid  shaped response curve up to a concentration of 10 ,  and no further improvement above that concentration ,  because you have all that is needed. More will not give a greater response.  

                         This type of response curve is markedly different to say drug responses ,   which may have activity over a  range 100 : 1 ,   i.e  a tenfold greater range.     It is a bit of a technical point ,   but it is for this reason ,  test and trials on nutrients are much more difficult to achieve,  because  the experimenter  needs to know the range of concentrations required to have the effect being measured. Co-nutrients need to be optimised as well, if known. 

                         The latest vitamin d research does indicate that we need blood levels  of at least 75 nmol/L . The dose required to achieve that  can be very different from individual to individual.   In general ,  if you take 1000 IU  vit D3  , daily  , then over a time period of 2 - 3 months your equilibrium level will rise by about 25 nmol/L .  So ,  take 2000 daily  and your level will rise by 50 nmol/L  approx. ( assuming a 75 kg adult )   The  more you take however , the slower your level will rise  when you have reached about 100,   you will then start to store Vit D.     If you have a higher BMI ,  then because Vit D is fat soluble  you  might expect to require more for a given rise in blood level.     As I said , we all have different responses.  In fact there is a 6: 1 variability ,   that is why it is important to measure blood level , and not just assume that a certain dose  will have such and such an effect. 
                      So ,  to answer your question , a low dose is better than no dose ,    but since vitamin d is inexpensive , it makes a lot of sense to take the right amount !   ... to achieve the level you require.  

Many vitamin D researchers think that 100 to 150 nmol/L is the most appropriate level. 

Hope this helps.

BTBH.

There is an exception to this general rule , when you consider a single cell , that may have undergone an unwanted genetic mutation , at which point the cell may need to self-destruct. The process is called apoptosis. To achieve apoptosis that cell requires vitamin D. As long as VitD is available to that cell, then apoptosis may occur, and uncontrolled proliferation of that cell line may be prevented. This is one of the critical pathways in which Vitamin D is involved. Apoptosis is one of the mechanisms our bodies use to defend against cancers.

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crispinquent · 30/05/2017 22:01

I moved here from northeast us two yrs back and bought SAD lamp first winter: the lower daylight is definitely a causative factor in D deficiecy. I found that a 15 minute sitting in the am and i noticed a difference

MyOtherDogIsAPorsche · 31/05/2017 05:29

Thanks BTBH - very interesting reading and really kind of you to take such time over your responses.

1t6y9o · 31/05/2017 05:36

Join the group 'vitamin d wellness' on Facebook - they have a protocol to follow with amazing results... you should be adding K2 and Magnesium in as those along with D3 work together.

If you follow the protocol you will feel amazing within a couple of months. Good luck! Remember, you will need to supplement for life (protocol explains all) and you should test levels every 3-6 months.

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