Recently diagnosed with Vitamin D deficiency

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Hi I have recently been diagnosed with vitamin D deficiency after years of pain and tiredness. I have quite a long history but have had surgery twice on my right foot. The first time was a straght forward bunion op and the second one I am now wondering if was caused by Vit D Deficiency as I was in so much pain after first op I needed the 2/3/4 metatarsals cuttings and replacing into different positions.

I also have Carpel Tunnel in right hand and been told I need surgery on it due to muscle waste, inflamed tendons and slight loss of sensation.

There isn't a part of my body that doesn't hurt and I am a 36 year old female. I am self employed and a mum (which can be very challenging with all the pain and tiredness at times!).

I have been prescribed pre d3 20,000 iu 3 times a week.

It turns out that I had a blood test in 2011 that showed I was low on vit d then so I have spent the past week battling between my GP and hospital to try get the levels and find out who did the original test and find out why nothing was done years ago for me. I am starting to feel fobbed off as no one is giving me a clear answer. The hospital won't give me the answers and told me they have to be faxed to GP which I asked for and after waiting days for this and chasing up twice the GP rang today to tell me they have recent blood test result which showed vit D below 30 if that makes sense to anyone?

They weren't sent the 2011 results so have had to chase up again!

I am concerned after having pain for years that this may have done damage. How long does it take to see a difference on that doseage?

My main pains are in lower right back, back right rib, hips, feet, hands, neck. 

It would be great to hear from anyone else with vitamin D defiancy.

4 likes, 255 replies

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  • Posted

    Hello. Everyone with back pain and vitamin D deficiency, can you describe your lower back pain - where is it, what makes it worse, what kind of pain etc. 

    I have lower back pain and low vitamin D - interested to hear other people's experiences.

    Thanks.

  • Posted

    Hello, I am a 46 year old mom from northern US with 6 children. When I read your blog I thought I was reading about myself. It was absolutely amazing. Just like you I have had pain all over for years and I told my husband {IT HURTS TO LIVE!!} I was tired of being sick and tired. So I was diagnosed with fibroid myalgia and the medicine helped for a while and it was a vicious cycle for months until I maxed out on the medicine then the Dr gave up on me and said oh it's just depression. I wanted to shake him and say of course I have depression, I have been suffering for years! Just like you I have had several surgeries on my right foot. The Dr said I have low bit D, iron and B12. So I started on B12 shots strong vit D and iron which led to me not being able to taste salt. So now from taking so much iron it gave me low zinc levels. I still have pain all over my body that puts me to bed. I HATE IT BECAUSE I LOVE TO BE UP AND AROUND. I had a MRI not long ago and they said my spine is deteriorating which is so painful as well. I just want to not have the pain anymore!!!!

    • Posted

      Sorry to hear this. What type of surgery have you had on your foot?

      Every time I have a new procedure or surgery I seem to get further away from recovery. This year so far I've had 3 procedures done (2 with local anathestic and 1 under general anathestic).

      I'm back to the GP tomorrow for more blood test results so will see how the vit d is after more vit d supplements.

      Can they do anything about your spine? Hope you feel better soon

  • Posted

    I have got my reent blood test results from GP and vit D is now 48 which is apparently only just below normal so she doesn't beleive my symptoms are related to Vit D.

    I have recently been diagnosed with Raynauds Disease and have just had a blood test today to test for Lupus - if that is clear the Dr is referring me back to rheumatology as its looking like I have hypermobility syndrome too.

    I still haven't recovered from plantar faciitis despite PRP injections, shockwave, steroids etc so my surgeon also wants to wait for my referal bck to rheumatology.

    • Posted

      If your 48 is in nmol/L then you will still feel terrible. My friend, who incidentally is a doctor, had vitamin D deficiency symptoms with a blood level of 46.

      Also when my level of vitamin D was severely deficient I was informed my vitamin B12 and ferritin levels while in the normal range where too low. My ferritin level was actually on the lower border of the normal range. I was actually advised to take supplements to get them both mid-range. Incidentally again it wasn't GPs who advised me on this. It was other practitioners.

      Within a few months of taking the B vitamin complex and iron supplements I stopped having fatigue plus foot numbness issues.

      I suggest you get tested to find out whether your vitamin B12, folate and ferritin levels are high enough. I should add in my case low ferritin and B12 levels means my white cell count is suppressed.

  • Posted

    I have been complaining of pain in my legs, arms, shoulders especially my hips for years. finally they did a vitamind blood test to see if I was deficient. I am at 18 . I am not sure if this is what is wrong and I guess I will find out soon. 

    I started taking 50,000 units once a week for the next 12 weeks...so I have no idea how long it takes to fix this but probably a long time. 

    • Posted

      18 is classed as vit D deficient, you should be at least 50 although nowadays they are recommending 70. It takes at least three months to get any relief from taking supplements. I bought a gravity sun chair and sit out in the garden with a cup of tea and a book to catch the suns rays, you should not have sun screen for a short time so the body can pick up the vit D. Also you can try and include foods containg vit D in your diet, although we do not actually get much vit D from food, but I suppose it all helps. 
    • Posted

      I started to feel pain in my arms a few weeks ago. Maybe it's because Vitamin D deficiency?

  • Posted

    I been vitamin D deficient since March 2016, I started my vit D2 60,000 ml once a week in May, I'm in allot of pain, my arms and hand feel weak and my hands as if they were on fire, at night my back and legs hurt, no energy what so ever,. So I took it upon myself to buy 5000 ui of vitamin d along with my weekly treatment,I was told today that my d level went from 18 to 39. The thing is the dr told me to stop the extra 5000 ui of vit D, I'm still in allot of pain,. When will the pain stop..

    • Posted

      It is not a good idea to overdose on vit D as that can be as bad as not having enough vit D. 
    • Posted

      It won't if the cause is something other than vit D deficiency. There are a lot of causes of these sort of symptoms, vit D deficiency is one and probably the easiest to rule out and sort out.

      The figure itself is not helpful without units since there are two ways of measuring - in one 39 would still be slightly deficient, in the other it would be OK. As ptolemy says, more than 60,000 IU per week isn't a good idea although you are well within the safe range there.

    • Posted

      Thanks ptolemy, EileenH my ESR test rate says I'm 27, Doctor says that for my age is safe,. I'm also on Crestor & Vecepa Since my cholesterol & Tygles are extremely high, These two can also cause muscle pain, going to ask my Dr to take me off for a week or two and see what happens. Thank you for replying. 

    • Posted

      As I started to read your post I was already going to say - it could be the statin. They are well-known for joint and muscle pain.
    • Posted

      Liza, when you say your ESR is 27 did you mean ESR or vit D reading? 
    • Posted

      Hi Liza, 

      Sorry to hear that you are feeling so awful, but hang in there. Just because your blood levels of vit D go back up does not mean that your syptoms will go away yet. If you have been deficient long enough to have the symptoms of osteomalacia (soft bones), it will take time to reverse this process, build up your bone mineral levels and normalise all the body systems that rely on vitamin D (clue: there are a lot of them!) 

      It took over seven months for me even to feel I'd turned a corner, and realistically, a year to get back to normal enough to work five days a week. Unfortunately, GPs don't seem to be very clued up about just how long it takes to recover from D deficiency serious enough to give you osteomalacia. Prof Michael Holick, who is a leading expert in the metabolism, pathology and epidemiology of Vit D maintains that it can take over a year to recover. 

      Your pain is likely to stop when your bones have hardened and re-mineralised enough that the nerves running through them are not being irritated by deforming under weight, and when your proximal muscles, which are likely to be weakened, have been built up again. You will see lots of anecdotal reports on here of people whose pain was at its worst while they were on the very high dose of vitamin D - I know it was for me. 

      Chin up - there IS life after vitamin D deficiency and osteomalacia, but it won't be tomorrow. My advice would be to prepare for a rocky few months ahead and accept your current limitations while your body heals, which will be full of ups and downs, leaps forward and setbacks if it is anything like my experience! 

      All best wishes, 

      :-)

    • Posted

      The maximum dose that researchers have found does people no harm is 10,000IU per day. This means that the maximum vitamin D3 you can take is 70,000IU per week.  Doses greater than this dramatically increase the risk of kidney stones and other side effects.

      Vitamin D levels rise slowly so it can take 3 to 6 months to raise your level significantly.

    • Posted

      Thank you Jaybelle, it's nice to talk to people who understand. 

      God Bless

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