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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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  • tola30383
    tola30383 k11990

    Posted

    Hello K- sorry to hear about your troubling symptoms. It is unfortunate that you missed out on treating your vitamin deficiency sooner/ more efficiently. It's good that you have finally a solid question to solve and that you're working on it. I'm not an endocrinologist/ nutritionist so the general info I received on vitamin D deficiency is limited. I think more and more clinicians are realizing it's importance and the grand scope of symptoms involved. ( Not just rickets and osteoporosis). I've read peer reviewed journals discuss vitamin d on the order of a hormone , which can affect not just the musculoskeletal but also nervous system and even affect mood and skin.

    People respond to supplements differently and there are so many different sources of vitam d I.e. Sunlight and diet, there are even lotions/ creams. So can't say how one will respond, too many factors to consider. I've read some people notice some gradual improvement within months. Unfortunately there are people who may continue working on it for years. I hope you see great improvement and are able to keep active.

  • jess13508
    jess13508 k11990

    Posted

    Have you ever noticed if your symptoms are more painful one day then the next?

    Or have yours ever gone without taking tablets then returned again

    • Jaybelle
      Jaybelle jess13508

      Posted

      The symptoms of D deficiency osteomalacia are NOTORIOUSLY variable from day to day/week to week. One day can be great, the next might be spent in bed, with no rhyme or reason to it. 
  • chris52254
    chris52254 k11990

    Posted

    I also had a vitamin D problem and I was taking 50k four times a week, In taking to one specialist I found out that I shoud be taking in with my largest meal of the day and after I started doing that my blood test level went up 30 points. But then I found out I had Hypophosphatemia and that lead to that I have Tumor Induced Osteomalacia and I found that I was low on Calcitriol, which a Vitamin D your kidness make. So make sure you have your doc. check all things why you have low levels of Vitamin D. Some of you here sound like you could have TIO, its very, verly extremely rare, only around 300 people have had this since it was first discovered in 1947.
  • mike0001
    mike0001 k11990

    Posted

    Hi,

    It usually takes around 12 weeks to replenish vitamin d deficiency. Then, if your levels are back to normal, your GP may decide on the maintenance dose which commmonly is 10mcg (400iu). This dose is also recommended by the NHS. I take vit d included in my multivitamins (FeelGood Island brand). Good diet also helps :-)

  • jess13508
    jess13508 k11990

    Posted

    I've just started taking Fultium-D3 800 iU 5 times a day . Since taking this I've been going dizzy a lot more and I feel unwell sometimes after taking it is this normal or maybe just anxiety. I'm hoping my aches and pains go or settle down soon. And that my dizziness goes altogether. Sometimes I can go weeks without the dizziness and then it just appears out of nowhere. I feel better that I know what's causing my symptoms or so I hope. But there is still that niggling in the back of my mind that it's something else. Especially now that I wake up and my hand is numb and swollen again.

    • chris52254
      chris52254 jess13508

      Posted

      Jess, I am taking 50,000 units of Vit D2 four times a week. At first taking this dose I was just at the bottom range so the doctor in Cleveland ask me if I was taking it with a large meal which I was not, so I started taking it with a meal and I increase the blood test by thirty points. So ask about taking it with a meal and if you do not it may help and help you adsorb it better. I also take the other Vit D Calcitriol, that your kidneys make and I take .5mcg every day. I still have pain and the stiffness and it is getting worse, the pain is better because I increased my pain medication, but it does not work for the stiffness. I think I will ask my doctor about increasing the Calcitriol to see if that helps with the stiffness and pain. I have not had any side effectes with anything meds, but the phosphate and to help with the diearrea I take it with a banna and crackers two out of the three times aday and that has really helped alot. I also suffer at night with numb hands and nothing sofar has helped with that. The med I was given for the muscle cramps has helped, plus it relaxes me enough that I get to sleep faster and sleep better and its called Zanaflex and mg is 4.
    • EileenH
      EileenH jess13508

      Posted

      It may take some weeks for your symptoms to change for the better even if they are only due to the vit D deficiency.

      As Chris says it helps to take the tablets with food - vit D needs some fat to transport it into the cells. I assume you mean you are taking the 5 tablets all together, not having to space them out through the day? That would be a pain! 

      And it may not be just the vit D deficiency causing the symptoms. Low vit D is often found in autoimmune disorders but the deficiency is the first thing to sort out - it is pretty straightforward.

    • jess13508
      jess13508 EileenH

      Posted

      Hi, no I'm having to take one, five times a day it is a pain!

      I've had my bloods done for auto immune disease and it came back negative? Does that mean it can't be caused by this.

    • EileenH
      EileenH jess13508

      Posted

      Hmmm - there are a lot of autoimmune disorders that wouldn't show up on a GP's blood tests. 

      Why on earth 5x a day? It is common knowledge the more often a tablet has to be taken per day, the poorer the compliance. Better to say take something once a day and know it will be taken!

      My husband was given a liquid formulation to take 25,000 IU once a WEEK, dropped onto a slice of bread. It seems to have worked! When I bother to take vit D (I do occasionally in the winter) I take 5x 1000 IU tablets from H&B a few times - hasn't failed to work yet.  I'm on 800IU/day like you but in calcium and vit D supplements which provide 400IU at a time. They are taken 2x daily but that is because of the calcium which you absorb far better when you take it in smaller amounts.

    • EileenH
      EileenH

      Posted

      Oh - forgot to explain: you can have low vit D anyway, but it is found in lots of patients with an autoimmune disorder.  What I meant was that if the symptoms don't improve once your vit D level is where it should be, then they could perhaps consider a/i. I refuse to believe a GP has done all the tests that would show autoimmunity!

    • jess13508
      jess13508 EileenH

      Posted

      They just tested me for rheumatoid and they said auto immune disease. All my blood results have come back negative including white blood cell count and b12 etc it's literally just vitamin d deficiency. My symptoms are not so severe the pain is bad sometimes in my thighs especially but it all came on so suddenly and things got worse over weeks and then some of the things got better and other things started happening. I'm hoping it will all work it's self out and that I don't have an auto immune disease. Still waiting for my ct scan results on my brain and my doctor has just booked me in for an MRI also.

    • EileenH
      EileenH jess13508

      Posted

      I have no doubt there are plenty of things they DIDN'T test for! Is this your gP who did the tests?

    • EileenH
      EileenH jess13508

      Posted

      He doesn't have access to the range of tests a specialist does nor the knowledge. Anyway - hopefully the vit D does the trick - but if it doesn't, ask for a referral to rheumatology and see if they can play detectives.

    • chris52254
      chris52254 EileenH

      Posted

      Jess, has your doctor tested the FGF-23 to see if you have TIO. The thing you have to remember is that if the test FGF-23 and it comes back okay you still can have TIO because FGF-23 has a low half life, so they do a SVS type of blood test and this will help locate the tumor. I recomemd that you read about FGF-23 and SVS blood test. The pain you are having in your thighs sounds like what I have. My next question for my doctor is why if I take the Vit. D and phosphate and my blood test come back okay, but why I still have the symtoms and they are getting worse and so far in my research I have not found an answer for this. It a present sounds like you may have TIO.
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