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Chronic vitamin D deficiency?

32 replies

hannnnnnnxo · 20/09/2018 19:53

In 2017 I was deficient in vitamin D - my result was around 15. I had an injection and was prescribed tablets for a year. I have received a letter from my GP stating that I’m deficient AGAIN this year. I am absolutely so confused as to why I’m still deficient? (I’m not sure of the exact result as the letter doesn’t say). Can someone shed some light as to why I’m not absorbing Vitamin D?

  • October - January: daily GP prescription of 400IU.
  • January - now: I bought supplements from Holland and Barrett: 3000IU Oral Spray, 4000IU tablets and multivitamin supplement which includes 10UG of vitamin D daily.
  • Also since January: 250MG Magnesium supplement to aid my vitamin D absorption.

I spent August in Bali (sunbathing etc) along with 3 other smaller holidays in 2018. I am also active, I walk a lot and go for hikes, walks along the canal etc. (I do spend most of the day indoors as I work in an office). This summer I wore skirts and sleeveless dresses too. I am 22, female, BMI 22, no other health issues. Would appreciate any advice as to why I’m still low as I have been making an active effort to improve it over the past year.

OP posts:
redsummershoes · 20/09/2018 19:55

absorbtion issues need to be considered.
coeliacs disease come first to mind (can be almost symptomless for some time).
or thyroid issues.

BestIsWest · 20/09/2018 19:56

Have you been tested for coeliac or parathyroid disease? Mine turned out to be the latter.

hannnnnnnxo · 20/09/2018 20:08

Thank you both.

I did request bloods of Thyroid - apparently my thyroid levels were normal last year and they didn’t mention anything about it in the letter today. I will ring and check tomorrow!

Also not sure if relevant, but I am vegan so I have a restrictive diet.

OP posts:
hannnnnnnxo · 20/09/2018 20:13

Have just checked the NHS website for Coeliac disease and none of the symptoms apply to me, aside from generalised tiredness (but that could be caused by lifestyle/vit d deficiency)

OP posts:
BestIsWest · 20/09/2018 20:17

Parathyroid and thyroid are 2 different things. Parathyroid glands regulate calcium levels so when they go awry can affect vit D.

hannnnnnnxo · 20/09/2018 20:28

Ah I see, not sure if I was tested for that. Will definitely ring and check tomorrow.

OP posts:
Bettertobehealthy · 21/09/2018 12:05

hi Hannnno ,
I hope you don't mind if I point out a few facts and observations with regards to vitamin D , which may throw some light on your problem.

         Vegetarians or Vegans  consume very very little vitamin d. It is not part of those natural food sources ,   in any meaningful quantity.   

Some animal products do contain a small amount, ( but NOT milk ). However our primary source of Vitamin D , is sunlight on skin. We make 10,000 to 20,000 IU when sunbathing in strong sunlight in less than an hour. Any one area of skin is saturated with all the vitamin D that it can make in 20 mins. it is the UVB radiation contained in sunlight which makes the Vitamin D , when it strikes the 7-dehydrocholesterol molecule in your skin.

In the UK,  sunlight is weak most of the time  and does not contain UVB ,  except  during the hours of 11 - 3  pm only  in summer.    Over the period Mid Oct- mid April i.e winter , there is no UVB in sunlight  and we cannot make vitamin D in our skin. this six month gap, tends to cause  a drop in most of the population.  

  The lack of UVB is caused by UK's high latitude on the Earth's surface ,  we are at 50 degrees, so that,  in winter and even in the early morning and early evening in summer the suns elevation is low and the path length through the atmosphere is longer thus  absorbing the UVB.  This is all just basic physics. 


  Anything which interferes with your absorption of UVB , will affect your vitamin D synthesis. i.e. suncreams.  Suncreams are designed to absorb UVB , and prevent interaction with your skin , and so SPF factor 15  or above absorbs 97% of UVB and so limits any Vit D production.    Nowadays  many official bodies recommend that you leave off sunscreen for 20 mins, precisely for that reason.  Never ever burn. 

        As you can see from the above ,  there are many factors concerning your vitamin D levels from food and sunlight.  Other considerations may arise when your supplementation or treatments are examined.  

           You should consider how much supplementation you need , on a daily ongoing basis.    The human body needs roughly 70 IU  per kilogram per day, from all sources, - food, sunlight and supplementation  That is why Gov. advice for newborns is to receive 350 IU  per day.      You personally will likely need  somewhere between 3000 IU  and 5000 IU  per day , ongoing as a maintenance dose. However we all have different responses to supplementation , by a factor of 6 to 1 .  It may be that your response is at the lower end. It may be that you cannot absorb the supplementation for some reason, as mentioned above.   

From your description above, a dose of 400 IU from the doctor was totally inadequate and unlikely to do anything meaningful to your levels. An average responder will raise their blood level by 25 for every 1000 IU of daily, long term ongoing supplementation.
In your particular situation , you could try an oral spray , say 6000 IU per day, every day . Then after a couple of months or more have another test, and check your level. The oral spray will go directly into the bloodstream, avoiding the digestive system. (CONT.)

     Your blood levels should rise to 100 - 150 .   If all goes well.  These levels are normal,  and are considered so by the NHS.  However many people have lower levels  , say 50 or even less, these too are considered normal,   BUT  crucially, they are not optimum for your health.  Outdoor living humans in general, at lower latitudes, have levels  around 120 - 140.  We should all have that kind of level.  In the UK  it is almost impossible to reach. We have  many health problems because of it.    
                  After  your supplementation and your re- measurement , you can then decide what further supplementation you need .  You may need to drop down a little, you may need to increase. It does depend upon your measurement.  Don't just assume. 
The NHS  are unlikely to offer you repeated Vitamin D tests , to check your levels,  because of the expense ,  or the mistaken assumption that one "treatment" is sufficient. As you have already found, one treatment is not sufficient. I would advise you to take control of your own level,  get it measured ,  control your own supplementation and optimise it.  
         You can get private vit D tests.    Here is an NHS  Lab,  probably the biggest in the country. You could send them a bloodspot test. They reply by e-mail within a week.  IF the test is not ordered by a doctor , they do charge £29  unfortunately. 
                    <a class="break-all" href="http://www.vitamindtest.org.uk" rel="nofollow" target="_blank">www.vitamindtest.org.uk</a>


          Here is a thread ,  where we discussed quite a lot about Vit D ,  levels , treatment  etc etc .    I posted quite a bit there , lots of information.  It may help.   

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

 OR   For more information ,  search my nick on mumsnet , lots of threads ,  or just get back to me.  

Best of luck ,

BTBH

MargoLovebutter · 21/09/2018 12:14

If you are severely deficient, then according to the NICE guidelines that GPs are supposed to follow, you should have been given a series of high loading doses (more than one injection), followed up with an ongoing dose of significantly higher than the dose you have been given.

cks.nice.org.uk/vitamin-d-deficiency-in-adults-treatment-and-prevention#!scenario

Synecdoche · 21/09/2018 12:29

A bacterial overgrowth such as h pylori can also cause malabsorption.

Agree with PP about loading dose - it doesn't seem as though you've had enough.

Hope you can get it sorted soon.

Synecdoche · 21/09/2018 12:32

Also, you're not on any PPIs are you?

mirandaspanda · 21/09/2018 13:57

This time last year I was diagnosed with low vit d - not as low as yours. Mine was 20. I had this 25000 tablets - I took one a week for 3 months. I haven't had mine restested but I am now taking the tablets again. I understand that vitamin K helps with absorption - but I'd like to understand more about this if anyone can help?

9amtrain · 22/09/2018 00:20

I think it's Vitamin K2 which directs the Vitamin D to the bones where it should be and away from your arteries where it builds up. To be taken when taking higher doses of Vitamin D.

Or something similar!

hannnnnnnxo · 22/09/2018 11:14

Is a secondary care referral possible for this? I am very frustrated with my GP.

Out of several GPs/nurses, only the most senior GP administers the loading dose. He is genuinely very rude, patronising and awful. He made such a massive deal about how my result was the lowest he’s ever seen and had two junior colleagues sit in on the appointment last year yet he gave me a basic treatment plan which hasn’t worked. I have found out today that their treatment plan for this year is just the same tablets.

I have been reading other NHS trust/CCG’s guidance regarding vit d deficiency and it seems like my GP did the absolute minimum in comparison. I never had periodic check ups throughout the 12 months of treatment, and I was given a low prescription/singular loading dose considering my result. I haven’t had my calcium levels checked etc. I know each trust/CCG has their own guidance so he didn’t do anything wrong, but it seems odd that he made such a big deal of how low I was but not alter his generic treatment plan to account for this.

I’m not on any medication aside from birth control. No allergies. No digestive system issues.

In my opinion I was offered low treatment for my level or I can’t absorb vitamin D properly. I have been told that the doctor decided that an appointment isn’t necessary, so he doesn’t find this concerning. I do as I am a 22 year old with constant aches and pains. I suppose I’m ageing but at 22 I wouldn’t have thought I’d be this tired and achy. It’s weird as my life was much more hectic years ago, I used to go clubbing all the time, get very drunk, work full time whilst studying full time with no sleep yet i still felt normal then.

My symptoms are tiredness (excessive yawning after a full sleep; falling asleep uncontrollably at work). General aches and pains: legs feel strained after walking up stairs (feels like I had an intense leg day at the gym), when I walk uphill going home my calves ache, I had a sprained wrist recently and a sprained upper arm a few months ago, both after no injury. I’m fit, slim and active and this has been a problem since 2017. I bruise easily, I had bloods taken and have a large bruise which hasn’t happened in the past. I don’t want to feel like this for another year.

OP posts:
hannnnnnnxo · 22/09/2018 11:15

Sorry for essay, just annoyed Sad

OP posts:
Synecdoche · 22/09/2018 12:35

Tbh if you've done the research just tell your GP what you need. I don't wait to be told anymore - when I need a blood test I just ring up and tell then what needs testing, the Dr signs it off and I call up for results. I don't bother with appointments - if prescriptions are needed they can be sent direct from the surgery to the pharmacy and I just make a note in my diary for 3 months later when I'll need a test.

I go to a busy practice and am very aware I'm only one of 1000s of my GPs patients but this isn't ideal I know. It helps though that we have named GPs at my surgery. Taking a more active approach to managing my own health is the most efficient way I've found that works to navigate the NHS in the current climate (not saying this should be the case). If your GP is unwilling to either be on top of your care completely or work with you collaboratively then change GP.

I don't think they'd refer out for a vit D deficiency per se unless they were worried about your body's ability to absorb it in which case you'd probably have to ask to be sent to a gastroenterologist for further investigations like the h pylori I mentioned below or coeliac as other PPs have suggested. I know you say you have no digestive symptoms but I think it would be a gastro to investigate malabsorption.

Meanwhile, have you tried a topical vit D spray? This bypasses the gut.

Synecdoche · 22/09/2018 12:39

Reading through your symptoms again I'd ask the GP for a coeliac screen to begin excluding that as your symptoms sound a lot like 'silent coeliac' to me. Not saying you have this but 99% of medicine is thankfully excluding something worse so might be worth checking!

Synecdoche · 22/09/2018 12:41

And again (sorry keep thinking of things) - ask for b12 levels to be checked along with folate. They're not usually checked on normal blood screens and these anaemias can cause really debilitating symptoms. Particularly as you're vegan as well, worth checking out.

Imnotaslimjim · 22/09/2018 12:53

My girlfriend had a vitD level of 6 this time last year. Dr told her to get pills herself. So we did a bit of research and she's been on 8000iu since then. She asked for a recheck last month and is only up to 75 so it really does take a while. The reason she got tested is because she was chronically fatigued (falling asleep within a couple of hours of getting up) had very low immunity (colds turning into pneumonia, tummy bugs needing hospitilisation) and her hair became very dry and was falling out to the point she was close to having bald patches. She also had horrific bone pain. Her shins and sternum were almost untouchable they were so sore. Now they painful but it's not intolerable.

I hope you feel better soon, it really can affect your life quite badly

Taffeta · 22/09/2018 13:01

BTBH - what an amazingly informative post Flowers

(My DS has a Vit D deficiency)

hannnnnnnxo · 22/09/2018 13:33

Thanks @Synecdoche. I’ll definitely mention them when I speak to a GP next. Had B12 checked last year which was in a normal range. I’m not 100% sure if it was checked this time as the receptionist said I’d have to book in with a doctor or call next week.

I just find it odd that after a year of taking both supplements and oral sprays, being out in the sun and following the advice and treatment plan I was given, that I’m still deficient. Like not just low, but deficient. So it’s seem silly for me to continue to take the 800iu tablets as it hasn’t had the intended effect over the last 12 months. Especially as I was taking well over 800iu anyway.

To be honest, I want to take few loading doses and have my levels checked again in a few months like other NHS teams in different areas carry out. At least I’ll find out if it’s due to absorption issues or not

OP posts:
9amtrain · 22/09/2018 13:59

@hannnnnnnxo what was the actual B12 result? Normal ranges vary and are too low in the UK. It needs to be above 550.

Saffrone · 18/10/2018 18:25

Hi

Sorry to butt in - but with a bit B12 of 226 & being both vegetarian & nut allergic, is there anything much I can do to increase my B12 levels?

TIA

Saffrone · 18/10/2018 18:29

I should add that I have lurked on here as chronic vit D deficiency over last decade, with associated pain, weakness etc. I have been having 10 000iu of vit D3 for some time, plus K2, but have only pushed myself up from around 10 to 65 vitD nmol/l.

hannnnnnnxo · 19/10/2018 20:40

Sorry can’t help much @Saffrone. I have a very high D3 level now; this thread was based on a paperwork error🙄

10000iu per day is plenty, in fact it’s such a high dose that prolonged usage may cause too high of a level - how long have you been consistently taking this much? The oral spray helps massively as it directly enters your bloodstream. It would be best to raise this with your GP who may be able to carry out further tests. Ask them if they would be happy with you temporarily raising your dosage?

Not too sure about B12, are you eligible for injections?

OP posts:
Chocolatedeficitdisorder · 19/10/2018 22:02

I insisted on my Vit D levels being checked about 10 years ago as my Gp thought I had Fibromyalgia, but I believed I had Vit D deficiency.

My 25 OhD level was...undetectable - 0.

All I was prescribed was ADCAL D3 twice a day - a total of 800iu daily. My levels didn't increase until I asked for stronger tablets.

10 years on I take 3600iu per day and feel ok, but the Gp isn't allowed to order the test any longer.