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Recently diagnosed with Vitamin D deficiency

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k11990
k11990

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

255 Replies

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  • Scotmaz1
    Scotmaz1 k11990

    Posted

    Wow.... Pleased to have found this. Just been diagnosed with severe deficiency and started on intense 6 week course before more bloods. 50,000 iu per week. Was hoping I'd feel better soon as I'm struggling. Keep hitting that brick wall where I feel I can't continue. Fatigue. Should I give in or push my way through it!!!! Going for bone scan & other vitamin levels checked. His long before I feel "normal".
    • Jaybelle
      Jaybelle Scotmaz1

      Posted

      Don't expect much for the first two to three months. I'm three months in and only just beginning to feel human. Brain fog first to lift, but fatigue, muscle weakness and pain much slower to shift. Don't push too hard or you'll be smeared all over that wall again and back in bed. 
  • Scotmaz1
    Scotmaz1 k11990

    Posted

    I've been told there's no point in sitting in the sun in UK at this time of year as its not strong enough to give us the vitamin D we need. Sorry.
    • Jaybelle
      Jaybelle Scotmaz1

      Posted

      You've been told wrong. Download the D Minder app to your phone, set your location and it will work out when you can make vitamin D via sunlight based on your latitude, season and time of day. At present, for the south of the UK, there is enough atmospheric UVB penetration to start generating D from shortly after 9am on a sunny morning. 

      Your supplement will be giving you the lion's share of your dose, but don't turn your nose up at the additional top-up you can get from the sun, which is, after all, the way we are supposed to get it. 

      This app was created in consultation with Professor Mike Holick, the world's leading researcher on vitamin D.  

  • loretta89480
    loretta89480 k11990

    Posted

    Hi, I also have a vitamin D deficiency and like you have for years suffered with sore bones, feet being painful and also have carpel tunnel on my right wrist.  I had complained many times to my GP about my aches and pains and sore muscles.  I am type 1 diabetic on insulin.  It was only when on the diabetes forum someone suggested I have a blood test for vitamin D that I found out why I am in such pain most of the time.  I am told being on the suppliment will make a difference but it takes about 3 months to kick in and then I have to be on a maintenance dose forever more.  I know exactly how you feel and how painful it is if someone holds your hands, wrists or ankles.  I know how tired you feel and how the pain in the hips and lower back is so painful.  I do hope my medication kicks in and I will feel better.  I asked my GP why was I left for so long without the test when I had shown symptoms of the deficiency.  No answer there!

    I hope we both start feeling better soon.  Please do keep in touch.

    • ptolemy
      ptolemy loretta89480

      Posted

      Loretta, it looks like half the British nation are vit D deficient. It is only recently that it seems to have hit the press. My pharmacist was offering free checks not so long ago. I assume it was a good way of selling vit D supplements! Hopefully GPs will become more aware of vit D deficiency. Apparently it virtually disappeared in the twentieth century after the years of rickets in the nineteenth century, but seems to be coming back again, presumably due to our changing life style and the fact we cover ourselves in Factor x suntan creams, while until not so long ago people would lie out in the sun without any protection. I remember as a child people covering themselves in olive oil to get a tan. 
    • loretta89480
      loretta89480 ptolemy

      Posted

      I grew up in East Africa and never used any suntan creams. In adulthood I used coconut oil so I wouldn't burn. In the summer or when ever there is warmth in the sun I sit out in the sun for at least 30 mins. Due to growing up in the tropics I can't sit in the hot sun, also being T1 diabetic the heat affects my glucose levels. I look odd when I do tan on my arms or legs because of white spots that remain white while the rest is tanned. This apparently is damage of pigmentation due to being in the tropics. I am hoping things will improve for me now I am on a Vit. D capsule. However in Scotland we are lucky to get 3 or 4 weeks in a year when the sun shines warmly. Thank you for replying
    • ptolemy
      ptolemy loretta89480

      Posted

      I am sure things will improve with supplements. Give it three months. What was your vit D measurement to start with?
    • ptolemy
      ptolemy loretta89480

      Posted

      I always ask for a print out from the surgery. The one I received this week had a comment from the GP which was incorrect! 
    • Scotmaz1
      Scotmaz1 ptolemy

      Posted

      My measurement was 15 or 6 depending which one you use.  Fed up with the fatigue, really struggling come afternoon!
    • loretta89480
      loretta89480 Scotmaz1

      Posted

      Yes I too am fed up with fatigue. Come evening I miss most of the TV as I always fall asleep I sometimes wake up feeling exhausted. My bones hurt, hips and lower spine hurts. I have fought to stay awake tonight. I at one time thought I was just being lazy. My dear husband would tell me I am not well and not lazy and to stop pushing myself. Now I know the cause I can accept that I am unwell and rest when I get tired. Rest when you can I know that does help me. I can't always rest but I don't worry about many things like dusting.
    • EileenH
      EileenH loretta89480

      Posted

      This is in response to a comment by ptolemy way back - I live in northern Italy, about level with Turin which is supposedly the line at which we have no problem making vit D from the sun all year round. It is estimated that at least 80% of the population here are vit D deficient! I assume as we don't sit in the midday sun for hours at a time as it is simply too hot, put a shirt on, out up the sunshade or go inside to the coolth. 

      The beliefs about "sun production of vit D" are overstated...

    • loretta89480
      loretta89480 EileenH

      Posted

      You are quite right EileenH but try telling that to an all knowing GP. To obtain the right amount of vitamin D from the sun you'd soon be a crisp
    • EileenH
      EileenH loretta89480

      Posted

      Hmmm - have you seen Jaybelle's post earlier on? That app must be reading different stuff from me!!!!!!
    • loretta89480
      loretta89480 EileenH

      Posted

      No I haven't I am new on here. Even so you'd have to have a lot of sun light on you to absorb vitamin D. Up here in Scotland that doesn't happen a lot. We get rain rain and more rain. Lots of cloud cover and high winds. We get about 3 or 4 weeks in a year that are sunny and hot and that is our lot.
    • EileenH
      EileenH loretta89480

      Posted

      I lived in Scotland for about half my life so I know about the weather! One daughter and my brother are still there.

      Scotland is almost too far north to get the sun high enough in the sky at lunchtime never mind 9am which this app claims you can make vit D at!

    • loretta89480
      loretta89480 EileenH

      Posted

      The app doesn't work for me. yesterday it showed the sun but here it was dark with heavy rain
    • EileenH
      EileenH loretta89480

      Posted

      If the truth were told - I bet it doesn't work. Full stop!!!!!!

      Apart from anything else, the theory doesn't take into account problems with the "skin factory line". If you took vit D production at the age of 20 as 100% then by the time you are about 40 it has fallen to about half that anyway. And many young people are vit D deficient. Any darkened skin colour, even a natural light suntan, means it takes longer to make the same amount of vit D. Even ordinary make-up has some protective effect and a light suntan is equivalent to Factor 12. Using Factor 8 suncream reduces the amount of vit D made by over 90% - so you would have to stay out in the sun for 10 times longer and even then you don't know how much has been made if your skin is on "go slow"!

    • loretta89480
      loretta89480 EileenH

      Posted

      My Dr told me to sit in the sun with bare arms and bare necking. No hat for 15 minutes everyday. I sat there silent for a while then asked "Where?"
    • EileenH
      EileenH loretta89480

      Posted

      You'd think he'd have noticed sun doesn't figure highly in Scottish weather! Maybe he needs to get out more...
    • Jaybelle
      Jaybelle loretta89480

      Posted

      Aye, this is when you want some ginger genes.

      There are two families who share a surname on Shetland, but can be distinguished by belonging either to the 'black' or 'red' branches. Thanks to a minute gene pool, although I technically belong to the first, I failed to reach 6'3" or grow any raven locks like my cousins. There may have been a milkman involved, but whatever, I'm blessed with being short and ginger.

      I burned to f***k several springs and summers in a row in Edinburgh, so I suspect there is some UVB, even there. You may get your light in between raindrops, granted, but there must be some D to be had outside of a mackerel or herring fillet. My friend is as brown as a berry after working in the garden on Arran's Holy Isle for an hour a day. 

      I'd suggest it's keep taking the tablets - or join a seal colony. 

    • loretta89480
      loretta89480 Jaybelle

      Posted

      Last year we had 3 weeks hot weather and then it was cool and wet. The year before it was so cold we had to have the heating on. In the South West Scotland at the bottom of the hills it's a guessing game what sunshine we will get. When we do get some warm or hot sun I am out in it with bare arms. But I can't stay in the sun for longer than 15 minutes. We have been through a dark cold winter and today had hail storm after hail storm. So it's a case of take the low dose of medication and wait for 3 months for them to work. No I can't have the full starting dose because of long standing kidney disease
    • Jaybelle
      Jaybelle loretta89480

      Posted

      My father and his brother emigrated in their later years to Gozo, a dot in the sea next door to Malta. They called it 'Shetland, but with sunshine'. 

      If you've dodgy kidneys, and no Mediterranean island, you may be in for the long haul. I thought I would never walk properly again and even entertained thoughts that I might quite possibly be dying, but I can honestly say I am slowly getting somewhere. I did the washing up this evening: a 'standing' feat. 

      Look after yourself and plan for a slow recovery.  I'm sure you'll slowly raise your D and mend your poor bendy skeleton and wobbly muscles. As a stop gap, perhaps 3 weeks on a Mediterranean island is prescribed this summer? 15 mins of sun, fish and a long nap every day sounds like the ticket - even if you're not a seal. 

    • loretta89480
      loretta89480 Jaybelle

      Posted

      You know I was saying to my hubby that I needed a fortnight back in Ko Semui in Thailand again. Red snapper every night a walk on the beach saying hello to all the dogs laying on the edge of the surf cooling off after the days heat that was bliss. I'd like to do it again. It is that dream that gets me through each day. Even my super memory mattress offers no relief. In the morning I can hardly move. But according to my Dr "it can't be that bad". Huh!
    • Jaybelle
      Jaybelle loretta89480

      Posted

      Fortnight in Thailand = MEDICAL NECESSITY. 

      (I can accompany as suitcase ballast if needed.) 

      On a more serious note, why not keep a pain and mobility diary for the doctor? Present it to him/her. That's what I'm going to do. He's a lovely man, but very over worked and clearly has no real idea of the pain and fatigue I blast through every day. I consider it my job to inform him. Say a prayer for him before my next appointment - he'll need it. 

    • loretta89480
      loretta89480 Jaybelle

      Posted

      Jaybell what a wonderful idea. I will do just that maybe then I will be taken more seriously. Thank you so much
    • karla41772
      karla41772 loretta89480

      Posted

      Hi was wondering how your getting along with the vit D3 has your lower back pain been getting better I have had this left sided lower back pain for 5yrs multiple tests mri's and drs all say sorry dont know why your having this pain not coming from your back ugh also been having pain in my right and left thumbs, but this back pain is the worst, and in most pain when sitting, so I read about this whole vit D3Deficiency and so I just went out and bought vit D3 5,000icu I go to dr next week going to mention this to him probably think I am crazy that I think.this could be causing my back pain I take pain pills that help me.function but doesn't help.for this awful pain I have while sitting and I also had nerve conduction studies showed nothing he said need mri its in the muscle had mri told other.dr that I was told in.the muscle ugh what a guessing game. Thanks for your time
    • henry20874
      henry20874 loretta89480

      Posted

      I have been feeling very tired the last six months. I have been having trouble with my concentration at first. I have also had serious cramps in all my muscles and serious pain in them. I'm type 1 diabetic as well and have been for ten years and have had really good control.

      I have been diagnosed with low vitamin D level (29). I have been taking the tablets ect but it has been 10 days since I have finished the first week of medication (1 tablet a day 40k units).

      I feel much better in myself and mind. But I still have the below symptoms and have had other changing symptoms.

      Things I have had for a short period.

      Headaches

      Weight loss

      Ampetite loss

      I only had to inject about half the amount of insulin I normally do for about two weeks.

      Things I still have serious pain in my muscles and some in my joints, sometimes I can't move and I'm in serious pain. The most pain is in my legs

      I seem to get cramp really badly if I do any walking or any sort of exercise.

      Seem to be much better in the morning and worse at night.

      I don't really feel that tired anymore just the bad pain

      I also feel like everything has siezed up when the pain is really bad.

    • ptolemy
      ptolemy henry20874

      Posted

      It normally takes at least three months to see the effects of the supplements.
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