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Vitamin D deficiency

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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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  • Flowers2221
    Flowers2221 helenab

    Posted

    Hi all, I don't want to scaremonger but I experience many (if not all) of the symptoms outlined in this thread and I've been diagnosed with MS.

    I am currently being investigated for Thyroid and fibromyalgia as well.

    I wish you all well. 

  • julia64696
    julia64696 helenab

    Posted

    Hi ive had tablets for vit d def.. for over a year

    . Its been a long process with slight improvement. Just had it checked again , waiting on results.

  • sharon_l4878
    sharon_l4878 helenab

    Posted

    My symptoms had gotten to the point I couldnot even walk up the stairs at my house.  I do take the vitamin D and B12 under the tongue.  I have started exercisering and feel better.  I did discover that when it is really hot or the berometric pressure is high I still feel tired.  I had heat exhaustion about 3 years ago and it still affects me.  I have noticed lately that my sugar is out of wack and that plays a roll in this as well.  
  • Joanne2389
    Joanne2389 helenab

    Posted

    Please DON'T GIVE UP! It took 6-7 months to really feel an improvement after taking high doses of vitamin D.I had a blood test every 2 months in order to see if my levels dropped under 50 ng /ml or went above 80 ng/ml ( I started at 16ng/ml). I took 6000 Ui in the beginning and then 4000 daily for maintanance.

    I had pains all over my body and muscle twitching which gradually developed in 5 years. Now, after 9 months I am 75% better  and my vitamin D levels are constant at 70 ng/ml ( I even have a notebook were I wrote down my pain level daily and I noticed the gradual improvement). I take 4000 UI daily to maintain my Vitamin D levels. If I take 2000 UI daily my levels drop (-20 ng/ml) in only one month! We need a  high dosage to maintain the levels in the normal range and constant blood tests to see how we absorb this vitamin.

    I even had vision changes (I saw colours with my eyes closed, visual snow and increased after images and floaters) and tinnitus and everything improved by 75 % (except the floaters which never go away), but dont forget: It took 7 months to really see great improvement and each month I am improving!

    I felt like fainting and this symptom is gone,too. The pain was unbereable, I thought I was going to die and the doctors couldn't find anything! I had every test under the sun, even Lyme disease tests and nothing was found. And this miracle vitamin simply improved it all and I hope to be 100% one day. But 75 % is enough to lead a normal life. The pain is in the background and i barely notice it. now .

    I DO believe that most cases of fibromyalgia are misdiagnosed and they are actually Vitamin D deficiency cases. I also had symptoms like muscle twitching, vibration sensation all over my body, burning and stinging sensation which are mostly gone. My nervous system was falling apart.My initial  VItamin D level  9 months ago was 16 ng/ml, so I can't say I had osteomalacia ( it wasn't low enough to cause damage to the bones). I think it is something that affects the nervous system rather than the bones and it isn't well understood by the medical community. I think Vitamin D directly affects the brain.

    PLEASE DON"T GIVE UP! IT really takes 6-7 months to really feel better. If you give up, the Vitamin D levels drop really fast and you will never know that Vitamin D  deficiency was actually the real cause of your strange and horrible symptoms!

    It really gave my life back. I wish  you all the best.

     

    I also want to let you know that I did't take any kind of medication during this Vitamin D treatment or before, even though the doctors wanted to prescribe me antidepressants for the pain, I refused to take them. Please test your vitamin D levels every 2 months, if above 80 ng/ml it can be toxic.

     

  • andrew64988
    andrew64988 helenab

    Edited

    Hi helenab

    Just wondering how you were doing now as I have similar symptoms to yourself.

    Andrew

  • elizabeth93562
    elizabeth93562 helenab

    Posted

    Hi Helen,

    Have a look at Rheumatologial ailments?

    Some of them are very difficult to diagnose as there is a group

    of them. I have Ankylosing Spondylitis - one of this group.

    Your doc. may well be right with his diagnosis. Meanwhile look

    at what are called Spondyloarthropies part of this group and compare with your symptoms perhaps?

    Keep taking the vit.D..

    ELIZABETH

    PS. Tingling is often to do with nerves,

    All best wishes.

  • kerry62705
    kerry62705 helenab

    Posted

    Hi, I am clutching at straws here but having been diagnosed just recently with Vitamin D deficiency, i am hoping someone will give me some hope.  I am 54 yrs old and usually a very fit, active female.  For the last few months i have been feeling absolutely exchausted, aching bones, memory loss(i thought i had early on set of Alzeimers).  I have worked through all of this and then just recently lost my voice so i visited the doctors. They ran some blood tests and have informed me of my deficiency. I am visiting the GP again tomorrow to find out how low my levels are but the way i am feeling i am expecting the worse. I am hoping to get signed off work for a short while but financially this is not good.  Any ideas how long till i get back to my old self?
    • frankiefoo
      frankiefoo kerry62705

      Posted

      Depending on how low your vitamin D levels are (deficiency) you could be looking at anything from a few months to 6 - 12 months. My levels went from 5nmol/litre to 145nmol/litre in a month on high dose vegan vitam D3 (derived from lichen) yet I am still in absolute agony. On top of that, I am unable to sleep well, cannot walk, stand, sit, lie down or do much for a good amount of time. But like I mentioned, it depends on how low your levels are, plus what else you have going on health-wise. It would be a good idea to have your bloods checked for anaemia as that too causes many problems such as the ones you're experiencing.

      I do hope you get signed off work and get back to feeling normal as quickly as possible. All the best. x

    • ptolemy
      ptolemy kerry62705

      Posted

      They reckon a minimum of three months to get back to normal I have heard, but as frankiefoo says it really depends on your current readings.
    • Jaybelle
      Jaybelle kerry62705

      Posted

      Hi Kerry, 

      Sorry to hear you are unwell.

      A friend of mine recovered her old zip and dash in twelve weeks after starting high dose vitamin D, but I am still recovering and working reduced hours almost ten months after diagnosis, although I really turned a corner after about seven months. In my case, I had been severely deficient for several years and misdiagnosed leading to osteomalacia (adult rickets). I still suffer from fatigue and muscle weakness, and I am fighting my way back to full fitness. 

      Recovery probably depends to a large degree on how long you have been D deficient and how much skeletal and muscular rebuilding needs ot take place. The important thing is not to rush yourself - when I did I crashed and burned spectacularly.

      Look after yourself and take things one step at a time. Vitamin D deficiency/osteomalacia is no joke, as you now know, and recovery has to be taken at the pace your body dictates.

      All best wishes for your recovery.

      :-) 

    • shei84234
      shei84234 Jaybelle

      Posted

      Hello, I know it is a topic that was published a long time ago but recently my Dr. diagnosed me with osteomalacia and the bone pain has me quite bad, he has prescribed high doses of vitD, please I wanted to ask you if your Dr. prescribed a calcium supplement or only with vit D did you recover? sorry for reviving an old topic

    • Jaybelle
      Jaybelle shei84234

      Posted

      Hi there!

      Sorry to hear that you are not feeling great. And no problem - revive away.

      I was not prescribed a calcium supplement but I did make sure I was getting plenty of dietary calcium. Although it took about 14 months in all, I did manage to throw off the symptoms of osteomalacia. The hardest part, to be honest, was trying to regain my lost strength and muscle mass from about 10 months in. Although it was a long haul I did get there in the end. I have continued to make sure I take a 5000iu/wk supplement through each winter and my doctor was amazed that I had such a good level of vit D in a routine blood test at the end of last winter. I smiled, but was thinking yup, never inviting that osteomalacia back. As you will see from other entries on this forum, it can get worse before it gets better but it does resolve eventually. I hope your recovery goes well.

  • CallaLilly
    CallaLilly helenab

    Posted

    So glad to find this discussion to know many of my symptoms are consistent with others, especially the slight vertigo! Recently diagnosed with Vit D deficiency and wondering if anyone here also had a their calcium and parathyroid tested? I was instructed to take 5000 IU daily and started with 4000 (2k with breakfast and 2k with lunch) and immediately felt worse - nausea in the morning then more foggy, more lethargic, intense headache in the afternoon. I have not taken any more because that kind of reaction did not seem normal. Feeling much better today, phew, but wondering if I should have my calcium and parathyroid checked based on pararthyroid .com website.

    Also curious about if anyone's symptoms came on suddenly? I had a busy Sept & Oct, but then took the first 2 weeks in Nov. to rest and slow down. Was doing better then felt a little run down Thurs, and woke up Fri. with what I thought was a viral illness that felt like the flu without a fever-leathargic, achy, muscle weakness, fatigue. Is this onset consistent with others? 

    • dhode
      dhode CallaLilly

      Posted

      Calla

      Not sure, I have had fluctuating calcium levels that my GP brushes off but my naturopath is quite interested in.

      Do you have regular GI issues? I would look to that first. I would consider a full D panel which involves 4 tests.

      I would also recommend looking at various cofactors such as K2 to direct the D3 and also Magnesium may help but make sure to get a good form with few additives. Ionic is typically the best.

    • CallaLilly
      CallaLilly dhode

      Posted

      Thanks dhode, and GI is fine. My calcium and magnesium are good but not sure about my K2, I go back to my family doc in about a month and will ask about other D tests. The good news is I am starting to regain some strength with the supplements and be outside as much as I can.
    • dhode
      dhode CallaLilly

      Posted

      K2 is a needed to take with D supplementation
    • CallaLilly
      CallaLilly dhode

      Posted

      Thanks dhode and will be looking into geting some K2 or more Brie smile to go along with my vit D supplement.
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