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Vitamin D deficiency

Posted , 124 users are following.

helenab
helenab

I've been unwell for on and off now for almost a year. I remember phoning off sick a couple of times before feeling tired and 'achy'. I thought I was just being lazy and this was psychosomatic. Then I started getting really ill when I developed a sudden onset of neck/shoulder pain which is still an on going problem now although the pain has turned into discomfort/ache which I have learned to manage doing exercise and stretches. I also feel sensitivity on other parts of my body (like invisible bruises.For 6 months I was coping with my neck/shoulder problem (symptoms are crawling/tingling sensation in the arm, sensitivity to touch like its bruised and cold feeling and dull ache on my shoulder blade).

Then gradually I started developing 'flu like symptoms' without cough or cold but with tiredness/fatigue and dizzy headache which are intermittent throughout the day, until 2 weeks later I started getting throbbing ache in my legs and eventually I couldn't sit all day without getting restless legs and crawling/tingling sensation in my legs which caused weakness in my legs and worse when I'm going upstairs - and my knees keeps clicking. I went to my doctors who prescribed me with naproxen. And told me that I had something called Reactive Arthritis, which i thought was a misdiagnosis. Overall I though that it could be viral related

This time I've been off work for a week when I started to feel better after a week on naproxen. I came back to work for a week feeling like i thought I recovered. Then boom 2 weeks later gradually the flu like symptom came back with extreme tiredness / fatigue and I've been in bed since. I'm still achy all the time regardless. I have no energy to do anything, even showering is a struggle. Ive been in bed most of the time, sometimes I try to go out with my husband for a few hours but I come back home absolutely exhausted and the soreness/headache i get is a different level. Most of the time I feel like my body is inflamed.

So i decided to get a second opinion and i went to see another GP who referred me for a blood test. A few days later, my results came through and I have Vitamin D deficiency. Everything else they tested seem fine.I have a better outlook now though after the diagnosis, apparently it will take months for the treatment to take effect. I guess now they found something they will stop investigating further (which worries me a little bit) but i guess its process of elimination so treat one thing at a time. Would be great to hear from others who also has this deficiency and whether the treatment was effective?

13 likes, 304 replies

304 Replies

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  • Glister44
    Glister44 helenab

    Posted

    I had all these same symptoms and it turned out I have Lyme disease. The testing for it is very inaccurate especially if you've had it along time. It took me over 5 years to get properly diagnosed. I also have very low vit D levels, I've been taking supplements for awhile and my level is still only 14.
    • CallaLilly
      CallaLilly Glister44

      Posted

      Sorry to hear Glister44! I dont think it is Lyme since I was not in tick areas. I have friends though who had a devil of a time being diagnosed with Lyme because docs in CO are not suspectful of it even though my friends said they had spent time in the mid Aylantic area. Hang in there, my frineds did see some improvement once they were diagnosed correctly.

  • andrew_08416
    andrew_08416 helenab

    Posted

    Hi 

    I am really glad that such an old thread is still running and that people are contrubuting.   

    I've recently been diganosed with a Vitamin D insuficency (scored 32) on my test at the end of last week.  My GP gave me Fultim 20,000 IU tablets to take twice a week for the next 7 weeks. I was also informed that I have an inflamation and will be refered to a specalist for further diagnoses. 

    So far I am not feeling any different. 

    My background.  I am a 37 year old male in the UK, who in mid 2014 was diagnosed and treated for stage one testicular cancer.  What is interesting is that the 8 weeks prior to discovery I suffered what was then the worst fatigue I have ever felt in my life, which is refered to as Cancer Related Fatigue or CRF. 

    Immiedatately after the surgery the fatigue almost disapered, within hours of coming around.  I later had Chemotherapy and had the Chemo related fatgue. 

    However... Immiedately following treatment I contonued to experience fatgiue (although greately reduced) and brain fog (Chemo or otherwise) These conditions continued until October last year, when I had my flare.

    I went from having a manageble condition which didnt effect my day too much to one which was disabiling. I could only manage a few hours a fay at work until I needed to rest that even sitting at my desk would tier me out.  The sysmptons included elevated fatigue, brain fog, muscle and joint pains, (muscles would burn like hell for no reason) slow movement etc etc.  Symptoms very similar to CFS/ME and/or Fibromygela (if spelt right)

    The flare lasted around 2 months. today I dont feel like my energy levels have improved at all since the onset. However the muscle pain has greatly reduced to nothing more then a dull ache.   Pain mainly in both my legs, and sometimes both upper arms. 

    Im left with a general weakness but at least I can move about and almost do a full days work at the moment. 

    Although its taken a little over 2 months for my GP to find a Vitamine D diffency plus also an inflamation.  I am right now not sure if they are connected or if I am to expect another flare up. 

    At the moment the dull aches appear to be consistant so I'll take advantage of the good days where I can and hope that they continue. 

    At the moment other then taking high dose Vitamin D I am none the wiser until my referal comes through.  

    I thought I would share my expereince thus far. hope everyone else is doing well 

    regards

    Andy 

    • Jaybelle
      Jaybelle andrew_08416

      Posted

      Hi Andy.

      NHS guidelines suggest recovery times for low vitamin D take place in 8 - 12 weeks. Your level isn't acutely low, but not being a medical professional I wouldn't want to second guess how long it will take you to feel better, especially as this may be related to how long your levels have been down rather than the absolute reading and your achy symptoms do suggest you have osteomalacia (softened bones). I, and others with very low levels or substantial osteomalacia symptoms have waited several months for significant change, although I have a friend who bounced back in twleve weeks. 

      My suggestion would be to accept that you may be in it for the long haul, don't push yourself too hard, make sure you can get time off work or reduce hours if you need to and look after yourself. (You are likely to find doctors regard it as a very low priority as it is a 'routine' deficiency that is already being treated.) You may wish to look up the books or website of Professor Michael Holick who is a leading researcher and practicing doctor in the field of vitamin D. I found his guidance very reassuring and informative in a time when my GP was able to give minimal support in understanding why I felt so awful and how long it might take to recover.

      All best wishes to you Andy

      :-)

       

    • andrew_08416
      andrew_08416 Jaybelle

      Posted

      Thank you Jaybelle

      Im actually quite new to having this, and since posting here I've been reading up on as much information as I can.  Some say having a score of 32 is difficency where others are saying its more insufficency. I think I would go with being more insufficent, and heartedly agree with you that there are more people on here who are worst then I.  

      You've answered the question with regards to how long it could take, this is repeated across a number of websites I read last night but its always best to get the information from others with a similar issue.  

      I consider myself fortunate to have had the big C, as not only is my GP working hard to get me back to normal but so are the oncologist team. I think my GP wants to get to the bottom of this before they do.

      Sadly the majority of symptoms all seem to be similar to so many other conditions. Im glad that my GP found the two things and the assurance that came with it that the pain is at least real. 

      Right now its about getting treated and hoping for improvements 

      Thank you Jaybelle I do hope your feeling well or on the path to recovery 

      regards

      Andy

    • ptolemy
      ptolemy andrew_08416

      Posted

      I believe 25 and below is classified as deficient. I suppose it is academic really if you have pain from it though. I am glad you have good medics looking after you.
  • andrew_08416
    andrew_08416 helenab

    Posted

    Thank you Ptolemy 

    the pain is definately real, out of interest when someone has a dificency or an insufiency for that matter.  do you have good days and bad days, or could it be due to the inflamation?

    Whatever the cause its seriously frustrating.

    warm regards

    Andy 

    • ptolemy
      ptolemy andrew_08416

      Posted

      My vit D was 26. I think it probably did vary, the sun made me feel better!
  • andrew_08416
    andrew_08416 helenab

    Posted

    Thank you all for responding thus far. 

    I've an update following my oncologist appointment yesterday afternoon and vitamine D may not be the cause afterall. 

    My oncologist confirmed that I have a insuficent Vit D but my calcium levels are optimal. They would not have called my symptoms as a result of poor vitamine D. They have discovered that the inflammation my GP was refering too is due to having high levels of LDH.  (>580iu/l) the cause at the moment is not known but have more tests over the next few weeks. 

    LDH is a cancer marker, but thankfully none of the other markers were elevated. Cancer isnt top of their list but they are not rulling it out yet until the tests are done. elevated LDH could also be caused by other chronic illnesses. 

    At the end of the day my symptoms are real and now proven.  Its a horrible situation to be in when nothing shows in the basic medical tests, nor with the more explority tests which leaves your GP scratching their heads and wondering why. You start to doubt yourself and start to entertain the notion that your symptoms are a menofest.  You keep telling yourself to grow a pair, man up and just to get on with it.  while you suffer in silent agony.  

    For me at least relef has come by now knowing that I am not crazy.  Despite the cause not being present right now its at least one step forward. 

    I wish you all the best in your vitamin recovery. for the timebeing I'll continue taking the suppliments despite the thought that is not the cause its still at an insuficient level. 

    warmest of all regards

    Andy

     

  • jeanette55017
    jeanette55017 helenab

    Posted

    Hi I was reading your post from a year ago and was wondering if the treatment helped. I have the exact same aas you and two years ago my vitamin levels were 21. I was complaining with all of your symptoms and doc told me to get a cruise stat... I never realised the pain was comming from low vitamin d. I got sun and pain continued. only worse. I started taking cod liver oil to try to help with rib nd hip pain and fear spread as i know this level of pain is not normal. I had vitamin d levels checked again along with other blood tests. They were all ok but vitamin d levels are 10 now, Im not taking any more crap from gp. I want something done as pain is unbearable and Im continuing to work even though iI limp badlyy with pain
    • Jaybelle
      Jaybelle jeanette55017

      Posted

      Hi Jeanette. 

      Sorry to hear you are feeling so awful. Just to be clear, is it correct that your doctor has not prescribed you a vitamin D supplement  despite your low blood readings? 

    • denise44265
      denise44265 jeanette55017

      Posted

      Hi Jeanette, your Dr shold be prescribing hig doses vit D  unless contraindicated as your level is very very low. Mine was 14 just before Xmas 2015 and I am taking hig dose vit d along with other vits which I like to take. I was working till early December but am now signed off work by my Dr untill I am feeling a lot better.

      Good luck and I hope you get taken seriously! x

       

    • frankiefoo
      frankiefoo Jaybelle

      Posted

      Neither my gastroenterologist or GP prescribed me vitamin D until I demanded some as my levels were 5 nmol/litre - severlly low - Osteomalacia. But the ones prescribed were not vegan and a very low dose so I supplied my own and apparantely within a month my levels went up to 145 nmol/litre... (???)

      That was in October. Since then, I've seen a rheumatologist in November who put the pain down to fibromyalgia. I'm still in constant agony and not getting anywhere with the NHS. I think they know the benefits of vitamin D but refuse to treat the deficiency.

  • nazmi90243
    nazmi90243 helenab

    Posted

    Hi Helen

    I have just recently been diognosed with vit d defiency and I know exactly how you are feeling. I am pretty certain it caused me to have depression as well as I was always down. I have recently been given medication and I am using every oppertunity to sit in the sun! Please if anything just try and get your diet on trasck if its not as this hurrys the receovery I am told. Take Care

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