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Vit d deficiency

Posted , 21 users are following.

helenemiles
helenemiles

I have recently been made aware that I am vit d deficient , following feeling extremely rough for a considerable period of time . 

Symptoms have included:

severe pain in my shoulders , elbows ,hips 

loss of muscle strength

poor coordination , very wobbly at times

exessive sweats 

fluctuating body temperature - sudden change from comfortable to freezing or the other extreme excessive Heat !!

extreme tiredness

lethargy..... To name a few 

I have found this forum really informative ,and reassuring hearing that with vit d supplements a lot of writers have noticed a big difference in their symptoms.

my quesion is once diagnosed as vit d defficient is this something that is prone to drop in the future ?or following a course of supplements does your own immune system usually maintain its levels ? 

Would love to hear from anyone who has a bit more knowledge than me 

Helene 

2 likes, 64 replies

64 Replies

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  • chris03990
    chris03990 helenemiles

    Posted

    Vit d is a fat soluble vitamin and as such is found i fatty foods. Unfortunately many people thinking they are doing the right thing, cut out all fats from their diet and this leads to other problems. It is essential to have healthy fats in the diet and by doing so you should not fall into a deficit unless health factors  affect your levels. Eat avocados, olive oil, coconut and other nut oils, oily fish, nuts etc.  exposure to the sun is very useful but  not the only way forward otherwise  religions which require women to cover themselves from head to toe in clothing would cause a bit d deficiency epidemic!!!! You need to protect  your skin from the sun so don't go mad and put yourself at risk from skin cancer. Supplements are generally good these days but don't buy cheap ones at any time, buy a good brand from a health food shop with a good turnover.
    • EileenH
      EileenH chris03990

      Posted

      I don't want to appear to disagree with your statement about vit D being found in fatty foods - but the NIH says

      "Sources of Vitamin D

      Food

      Very few foods in nature contain vitamin D. The flesh of fatty fish (such as salmon, tuna, and mackerel) and fish liver oils are among the best sources. Small amounts of vitamin D are found in beef liver, cheese, and egg yolks. Vitamin D in these foods is primarily in the form of vitamin D3and its metabolite 25(OH)D3. Some mushrooms provide vitamin D2 in variable amounts."

      If you check nutritional analysis tables you will see there is no vit D in olive oil, avocado or coconut oil, in fact there is no vit D in almost all plants except mushrooms. The role of these oils is to improve absorption of vit D from other sources from the gut and are important for that reason.

      There IS a serious vit D deficiency epidemic amongst women in the ethnic groups you mention with quite high rates of rickets amongst their children. Rickets is reappearing in the UK too and the Southhamptom Hospital has published artclies about this in the past. The recurrence is linked by their experts to the massive use of Factor 50 sunscreen on children and the amount of time they spend indoors compared with even 30 years ago. The highest rate of vit D deficiency by the way is said to have been found amongst Australian dermatologists.

      Even the cancer charities have started to recommend that people should spend 10-15 mins per day in the sun without sunscreen first - not allowing themselves to burn but breaking up the time into 5 minute bites if necessary. 

      Exposure to the sun remains the predominant way to obtain vit D - if you choose not to go out in the sun, you require vit D supplements because unless you eat something like half a pound of salmon every day or a 17-egg mushroom omelette you won't get enough vit D from food unless you live in the USA where milk, orange juice and cereals - NONE of these are fortified in the UK.

      These are figures suppled by the NIH and other governmental agancies who have done the laboratory testing. I didn't make them up.

    • helenemiles
      helenemiles chris03990

      Posted

      thanks Chris for your comments .

      re diet ... This is what I don't understand , I eat probably over the recommended weekly amount of nuts !!! Love them and take a bag to work daily .... Don't cover up to excess ... Only 49 .... Bit of a mystery really but the symptoms are awful have never felt so ill feel like a 90 year old !!!!! 

      I have been prescribed vit d3 22,000 3 caps 3times a week for 5 weeks and then bloods will be repeated . 

      Im hoping that this will improve my symptoms .

      helene 

    • helenemiles
      helenemiles EileenH

      Posted

      thanks Eileen that was my thinking . I like the sunshine and am not from an ethnic background . 

      Its a bit of a mystery really and I am very curious to attempt to explore further as doesn't seem to make sense really if you know what I mean .

      im just hoping that the 22,000 of vitd3 is going to increase my levels and I feel human again. 

      Helene

    • tiswas24537
      tiswas24537 EileenH

      Posted

      thanks very interesting . i dont go out much in the sun i have low vit d levals 

      doctor did the test as soon as i said i had pain in my feet . 

      but he told me to buy my own and gave me no more info 

    • Wakkawakka
      Wakkawakka chris03990

      Posted

      Vitamin D isn't a vitamin at all. It is actually a hormone. When you are vitamin d deficient usually a doctor will prescribe a large dose of vitamin d2. This doesn't absorb well because it is a synthetic vitamin. You should also be taking vitamin d3 capsules and vitamin k2. D3 is what your body produces and is what you get from the Sun. K2 is needed to help keep Calcium in your bones and not in your arteries and vessels. Extreme amounts of vitamin d can cause you to lose Calcium and your bones may soften (Osteomalacia).

  • chris03990
    chris03990 helenemiles

    Posted

    I can see where you got this impression but  the reference to olive oil is merely in relation to healthy fats. And their need to be included. In the diet . As you are well read  you will already know this of course.  The overall synergy of nutrition means we cannot exist without a very well mixed balanced diet in order to supply our body with every micronutrient needed . The foods containing vit d are indeed fatty foods as I stated and as you have listed.  Most people would eat well from the dairy group , oily fish etc etc and under normal conditions would rarely suffer from such a deficiency in the western world. It should not be necessary to eat ridiculous amounts of any one food to get the supply either  if your diet is varied.Under normal conditions it is not difficult to obtain enough vit d from food sources  even in n Europe where the hours of sunlight can be significantly less  than in other parts of the world, supplements  are not necessary for most people unless they consider themselves to have an inadequate diet or have a medical need .No one would argue that exposure to sun is indeed a means of  increasing available vit d and I doubt that anyone living in the uk and other parts of Northern Europe would have any prob

    em with minimal exposure to the sun but it is unwise to expose yourself to full sun, there is no need to risk burning by exposure prolonged or otherwise to full sun especially around midday, on holiday etc.  just going about your business lightly dressed in summer will provide sufficient exposure.. 

    I don't wish to get into a bickering session, we are here after all to try to help Helen in her quest for vit d balance. Only her doctor knows the history behind her case and I am sure is dealing with the underlying reasons for the difficiency as we speak. Good luck Helen, hope you are feeling better now , it's amazing how quickly the symptoms of deficiency disappear once that deficiency has been identified.  On a plus note vegans seem to remain very healthy and they eat neither oily fish or dairy foods! Wonder if they have to live on supplements. The ones I know are not sun worshippers either....interesting  , perhaps the vegans out there can enlighten us.

    • helenemiles
      helenemiles chris03990

      Posted

      Thanks Chris 

      quite thought provoking smile would be good to hear from the vegan population for their stance on the subject .

      I only started on the supplements this week so no change as yet , but I am feeling more optimistic and hoping that in a couple of weeks I will be reporting a positive change .

      helene

  • EileenH
    EileenH helenemiles

    Posted

    If taking the vit D supplements doesn't resolve the symptoms do ask your GP to consider whether you might have something called polymyalgia rheumatica as you are old enough for it to be considered a possiblity and the symptoms you complain of are very typical. Vit D deficiency is one of the exclusion diagnoses and there are a range of other things which are all very similar in presentation.

    But I do hope the vit D does the job - it should take a couple of weeks maybe for it to work though - all depends how deficient you were as well. You will tell us won't you?

    • helenemiles
      helenemiles EileenH

      Posted

      hi

      my vit d was 19 so very low .

      lets hope that this will increase when bloods repeated in 5 weeks time .

      appreciate your comments smile

      helene 

    • EileenH
      EileenH helenemiles

      Posted

      Yes, mine was about that even though I spent a lot of time out in the sun with no sunscreen. My daughter's was 12.  I just used H&B stuff and got it up to nearer 50 in a few months. Once it is up you just need to keep it at a decent level. 

      all the best

  • EileenH
    EileenH helenemiles

    Posted

    If taking the vit D supplements doesn't resolve the symptoms do ask your GP to consider whether you might have something called polymyalgia rheumatica as you are old enough for it to be considered a possiblity and the symptoms you complain of are very typical. Vit D deficiency is one of the exclusion diagnoses and there are a range of other things which are all very similar in presentation.

    But I do hope the vit D does the job - it should take a couple of weeks maybe for it to work though - all depends how deficient you were as well. You will tell us won't you?

  • Jaybelle
    Jaybelle helenemiles

    Posted

    Hello Helene. 

    Poor you! Confusing, isn't it? I know, because I have also had a recent diagnosis of vitamin D deficiency and feeling a little bit 'poor me', much as I try not to. 

    I have all the same symptoms, and like you I'm trying to make sense of it all, find some answers and get better. It's been a six year battle after a misdiagnosis of 'fibromyalgia', which is just a collection of symptoms with a name - allowing a whole host of illnesses to go uninvestigated and untreated. frown

    Although another poster has said vit D is nothing to do with your immune system, this applies perhaps to its synthesis. So-called Vitamin D itself actually functions as a hormone in its active biological form and it most certainly has a profound effect ON your immune system. There is plenty of good research evidence and epidemiological data to support this. Autoimmune conditions are more common in vit D deficient people, and I was given a diagnosis of Hashimoto's thyroiditis at the same time as the Vit D news. 

    ​My GP has told me that I should take a minimum of 1000IU vit D daily for life once my high dose 10 week course has finished. Perhaps you could ask your GP what he/she thinks about this for you? Personally, I know I am unlikely to make enough year round from sunlight. I do have a handy little app for my phone called 'D Minder' that keeps track of how much vit D I am theoretically making from sunlight based on time of year, latitude, time of day, length and amount of skin exposed. It is available free. 

    I think you would find what Dr Michael Holick has to say very interesting, if you haven't discovered him yet. He is regarded as one of the world's leading experts in vitamin D metabolism and epidemiology, and is an active researcher. He is also extremely spirited and entertaining. You can find his lectures on YouTube. 

    There is also a known link between vit D deficiency and malabsorption syndromes, particularly coeliac disease, especially where the D problems are associated with other deficiencies such as iron (anaemia), folate and B vitamins. Did you have a set of bloods done for your diagnosis? My GP is going to go down this route if the host of supplements he has prescribed have not improved these deficienceis in the next few months. 

    I hope you begin to feel better soon. I am about 6 weeks in to treatment, and have to say the pain has increased, but I have read that it can feel worse before it feels better. I find it very hard adjusting to an illness that doesn't sort itself out after a few days rest or a course of antibiotics, but I suppose we have to keep fingers crossed that it will improve eventually. biggrin 

    Take care,

    All best wishes.  

    • EileenH
      EileenH Jaybelle

      Posted

      The same thing I said to Helen applies for you too if you have previously been offered a dx of fibromyalgia. Fibro and vit D deficiency can have a lot of overlap symptoms with polymyalgia rheumatica - the primary difference is you get a dramatic improvement in PMR with a moderate dose of corticosteroid (15mg). Usually I'd not suggest it for anyone not yet in their mid-40s - the guidelines say "in over 50s" - but I (and others) believe that there are many younger people with PMR who are incorrectly diagnosed and labelled with fibro because of this conviction it is a disease of the elderly. Just in recent weeks on the forum we have had a few women in their early 40s who have been diagnosed with PMR and the youngest case in the literature was a 24 year old man! 
    • Jaybelle
      Jaybelle EileenH

      Posted

      Thank you for taking the time to comment, Eileen. 

      No inflammatory markers in CRP or ESR were noted in recent blood tests, so I don't think PMR is a likely candidate - but I'd certainly love to be able to take a pill that would sort me out within a couple of weeks! 

      Many thanks and all best wishes.  

       

    • EileenH
      EileenH Jaybelle

      Posted

      Approximately 1 in 5 patients with PMR "never mount the inflammatory response" - as the medics so delightfully express it! The blood tests are merely one bit in the jigsaw and a non-essential one if only the docs realised! It is a clinical diagnosis and the final clincher (albeit disputed) is the dramatic response to 15-20mg pred. I never had an ESR above 7 (it is usually 4 so maybe when it was 7 it was nearly doubled), my CRP has never gone up except one morning when it turned out I had had an episode of atrial fibrillation. One day I took 15mg pred at 10.15am and at 4pm I got up from the computer, walked downstairs to get a cup of tea and back up to the computer. Then I stopped and went "Wow!". Until then I had gone downstairs one step at a time like a toddler and back up on my hands and knees or one stes at a time, pulling myself up by the handrail. I could barely dress myself and 10 minutes in a chair and I was like a 90 year old - at 52. 

      Never say never... 

    • helenemiles
      helenemiles Jaybelle

      Posted

      Hello

      thank you for taking time to reply . 

       I did have bloods taken to confirm ... Current vit d 19 . 

      I don't think I have ever experienced such pain !! I started vid d 3 last week 22'000 3 times a week for the next 5 weeks . What I have experienced the last few days is that the severe pain appears to be travelling .... Originally elbows,  hips,arms then shoulders added to the list !! But Friday it appeared to set into my neck and deep into my back .Didnt know what to do with myself as every part of me hurt and mt movements were so restricted because of the pain !! This morning my right side felt somewhat pain free as if my body had been sliced in half the left awful !!! 

      I find this very weird it's as if it travels in waves throughout the body .

      have you experienced anything like this ? My right arm now and shoulder just feel sprained as if I have been pumping at the gym more muscle pain and very tender to touch .

      I would so like to find out more 

      hoping that you are ok 

      and thank you again for your reply smile

      helene 

    • EileenH
      EileenH helenemiles

      Posted

      Aa I said before - what you are describing is something large numbers of polymyalgia rheumatica patients would recognise immediately. If it continues to get worse do discuss the possibility with your GP. 

      This is the leaflet on this site

      https://patient.info/health/polymyalgia-rheumatica-leaflet

      There is also a forum here

      https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708

      where you will also find a thread with links to find more info.

    • Jaybelle
      Jaybelle helenemiles

      Posted

      It sounds pretty familiar! Let's hope that the vit D supplements do their job. From experience, and reading other people's, it does not resolve overnight - and I suppose that makes sense if you consider how the skeleton has to remineralise itself. It took a long time to lose all that calcium and phosphorous, and it must take time to put it back. Meanwhile, the bones are soft and easily distorted, hence the pain in the nerves. Is your doctor dicussing osteomalacia with you? Mine simply talks about vit D deficiency and will only consider looking at my skeletal status IF I have a fracture - so no firm diagnosis of osteomalacia despite all the clinical symptoms. 

      You've got every reason to feel awful - if you are so vit D deficient, you almost certainly have low serum calcium as well which has knock-on effects on muscle strength and function (weakness, tics, restless legs, cramp) and severe fatigue. I don't think GPs realise just how debilitating the effects of D deficiency/osteomalacia are. I think the clue was when mine suggested I take paracetamol for the pain. I was thinking more along the lines of intravenous morphene at that point. The look on my face must have been priceless.    

      The reason I asked whether you had had a set of bloods done is that there might be some other clues there for you and your doctor. I don't know much about PMR, which EileenH suffers from, but I know it is suspected when inflammatory markers in the blood are high - ESR and CRP.  Anaemia, folate and other deficiencies might point towards malabsorption sydromes such as coeliac disease that contribute to the original vitamin D deficiency and suggest that oral treatment might not be that effective. It's fair to ask for a full set of bloods at this point. 

      Let me be clear that I don't recommend any course of action or treatment for anyone else, but I have chosen to add in some supplements that my researches so far suggest are helpful for skeletal rebuilding. Along with my 70,000IU/wk vit D I am currently taking a calcium supplement and a vitamin K supplement containing K1 and two forms of K2. I am also taking a magnesium supplement transdermally (as my poor intestines are getting a lot dumped on them at the moment!) as so-called magnesium 'oil'. Warm Epsom salt baths do the same thing, and are very calming for sore muscles. I'm also boiling up bones for broth - all the ingredients for bone rebuilding are in there.

      It seems to be important to keep doing weight bearing exercise, as this really promotes the skeleton to maintain and build bone density. I'm trying to force myself to go for a gentle walk every day, no matter how I waddle and cuss! Also getting into the sunshine, which my D-Minder app tells me is giving me between 400 and 1000 additional units of D a day, depending on weather.  

      Hang on in there, Helene! 

      J

      :-)

    • EileenH
      EileenH Jaybelle

      Posted

      Providing your skin factory is working well and depending on the time of year as well! That is more than half the problem - you need face, shoulders and arms at least exposed with no sunscreen around midday. From September to May in the UK the sun is too low in the sky to be strong enough to flip the switch - it has to strike the skin at an angle getting close to vertical to do that. 

      For me - I'm just old! At 60 your skin can only make about a quarter the vit D that it did at age 20 - and an awful lot of 20 year olds are deficient too. It's about halved by 40 - plus I guess we wear more clothes too! 

      But the sun makes us feel better whatever! Not that I'm going out today - there is a howling gale from the north and it feels about freezing. I went out to hang some washing out (perfect drying day, humidity of 25%) and thought my hands were going to drop off!

    • helenemiles
      helenemiles Jaybelle

      Posted

      Ahh thank you for your comforting words smile 

      little steps .... Literally lol boo hoo 

      Helene 

    • Jaybelle
      Jaybelle EileenH

      Posted

      Thank you for your input, Eileen. If I don't get any relief after a few months of the D angle, I might ask the doc what he thinks about this. I can't see how one would move forward, though, if the doctor disagrees and won't sanction a trial of steroids. However, I'll cross that bridge if I get to it. Thanks for the advice. 
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