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.
Hi
I am 7 weeks into taking 10,000 units a day and feel no difference in pain or tiredness. GP told me it takes months to feel a difference. He refuses to prescribe anymore and told me to take 1000 a day.
Hi
I have recently been diagnosed with calcium and vitamin d deficiency and I have been prescribed Adcal d3 200 I.U And have to take 4 a day.
I have been having pins and needles in my arms and they are constantly aching!
I am yet to find out why I am deficient and what is causing the pins and needles in my arms.
I hope u get some answers soon
Welcome to the Vitamin D junkyard!
Don't worry - we're all D defectives here. I'm coming up to 3 months since diagnosis and treatment with 50K IU/wk after a misdiagnosis of fibromyalgia 6 years ago. I am just beginning to feel slightly less pain and fatigue now after three months of high dose treatment, although I can have good days and awful ones that put me right back in bed for a weekend.
It seems that although GPs have been told to check for D status in patients, they are not yet up to speed on the morbidity of the conditions resulting from deficiency. All of us on here know that we're in agony, weak, fatigued, brain fogged, in no condition to hold down a job and suffering from serious limitations due to our conditions.
GPs are not even using the correct term 'osteomalacia' to diagnose patients who are suffering from the bone softening and muscle wastage caused by D deficiency. Although osteomalacia is apparently correctable, I have also read that it can cause permanent joint damage although my GP denies this and will not refer me to a rheumatologist unless I suffer a fracture. (Like you, I worry about permanent damage to my feet.)
Professor Michael Holick is the leading authority on all things vitamin D, and can be found online. His advice is that osteomalacia takes years to develop and can take a year or more to resolve, although people may begin to feel better after three months or so.
My advice is to start to take yourself seriously as someone with a major health problem that cannot be ignored, and plan for a year of recovery. I am trying to come to terms with this - not easy for a 'doer', but we have to start respecting our limitations and look after ourselves because, honey, the doctor is probably far too busy to do it.
All best wishes.
:-)
It takes about three months or so to get your vit D up. I measured 26 last year and sat in the sun each day, if there was sun, as well as taking supplements. I went up to 52 after around three months, my health authority suggest 50 as the bottom of the normal range although some suugest 75 as a minimum. I was checked again a month or so ago and I was 64, in spite of not sitting out in the sun over the winter. Supplements do work, I did try to add food with vit D into my diet, although most vit D comes from the sun only about twenty oer cent from diet, but I felt it all helps.
Hi there, you sound just like me! I'm taking 60000 units of vit d per week after being told that my vit D level is below 12. I ache a lot particularly my lower legs and pelvis. I've also been diagnosed with fibromyalgia. It's really hard sometimes, I used to be one of those athletic types, going out hiking gym three times a week etc but now I'm lucky if I can get off the couch, and have put on 3.5 stones as a result which then hurts your joints even more- vicious circle! I hope you get the help you need, I've only just been diagnosed a month but have had joint problems for at least three years. Don't give up! X
Sorry to hear that hope you feel better soon - do they have to monitor your D levels regularly? I am having them checked in 3 months.
Its frustrating isn't it! I have spent years knowing something is really wrong but although the drs are listening they are treating everything individually to treat rather than looking at overall. I have had pins and needles but its been in my hands (mainly the right one) due to the carpel tunnel. Have you asked for a conductive nerve test? Something I haven't had but been recommended to have.
Thank you for your great advice. I spent years back and forth to various doctors, specialists etc and it was finally a month ago that I got to see the rheumatologist - I feel that I have had to really fight to get that appointment! After just 5 minutes with him he said that it sounded like some of my problems could be down to vit D - the blood test has now confirmed this. Why have I had to wait for so long to see someone with common sense who knows that it is not normal for a 36 year old woman to be in pain every day for at least 7 years or so!!
If only I had seen him a long time ago.
I have lost count of the things I have had to see specialists for over the years - its great that I have been treated for each thing but I wish someone had listened to me when I have asked so many times 'can something be causing all of these things'?
Instead I have had 2 lots of gruelling surgery on my foot, months and months of physio on them, specialists about my back and rib pain, speciailists about ongoing feet problems, had specialists insoles made, months of physio for a shoulder impingement, specialists for carpel tunnel and hand problems, at least 5 shots of cortosone steroid injections for pain - the list literally goes on!!
Just one simple blood test for vit D would have shown this years ago and probably prevented some of these things from happenning.
I guess I am angry right now because I feel so much has been taken from me for years having to suffer with pain and tiredness when I am a mum to 2 primary school age children, I am self employed trying to run my own business and each day has been so unpredictable with no choice but to carry on and grit my teeth through the pain.
Funnily enough I was at the dentist last night who told me that she has suddenly had a huge rise of her patients with vit D defiancy - obviously something is happenning now and more people are being tested which is a good thing.
Its good to know that you are starting to see an improvement. Have they mentioned testing you for Osteomalacia?
Thank you for your reply. That is good to know the tablets work well. I do make an effort to get in the sun everyday (although we are a little restricted in the UK some days!!) as I have a dog so try do as much walking as possible each day.
Hope you're feeling better now.
Oh I hear you there!!! I have been on weight watchers for a few months now since Feb as I have gained since my last foot surgery last year. I was off my feet for around 2 months and it really caught up with my weight! Despite being in a lot of pain I have 2 children that keep me active and dog walking to do every day so am trying to increase that each week. I did have to calm it down a few weeks ago though as I pushed myself too much and ended up in agony.
I had my back and pelvis x-rayed a few weeks ago as its one of my many problem areas (felt much worse at end of sit especially in sitting position) and the x-ray was normal but with some slight change to tendon insertions on my pelvis/lower back so I guess they will have to keep an eye on that.
Hope you feel better soon.
Hi there K11990, and to all other posters.
I have, today learned that I have low Vit D levels, after mentioning that my energy levels are extremely low, that I ache all over and feel generally unwell. I'm used to monitoring my energy levels and joint pain levels as I struggle with a compromised immune system and have been given a diagnosis of chronic fatigue syndrome in the past. Additionally, I have osteo arthritis in my ankles and knees.
The Vit D level is 23. Ironically, the results of a recent chest X-ray, show that my heart is enlarged. I have a date for a blood test to further investigate this.
I found all of the earlier posts very informative and helpful. Many thanks.
Hi hope you feel better soon. Has the Dr started you on vit D tablets?
Any of you who have been told you have low vit D and don't improve with supllementation - ask for your GP to check your ESR and CRP levels in your blood. Vit D deficiency is often found in autoimmune disorders and one is very similar to the symptoms due to lack of vit D: PMR, polymyalgia rheumatica. 80% of patients have raised levels of these tests. The management is prednisolone but it makes so much difference!
Once your vit D is raised those symptoms SHOULDN'T take months to resolve - and 60,000 IU should do the job in a couple of months at the most. Many people feel better in a couple of weeks.
Only works in the summer and at lunchtime - sun has to be fairly high in the sky for it to work. You only need about 10 mins though.
Your doctor shouldn't have told you to take double the dose of Adcal - it is overdosing on calcium if you do that and it isn't good for you for all sorts of reasons. If you need more than the Adcal vit D (and it is a pathetically low dose at that) you need pure vit D supplements and if the level is really low you need the high dose ones only available on prescription.
I've come across GPs doing this before - it's appalling.
Hi there k11990.
I have an appt later today to see my Gp and to pick up a prescription for my Vit D supplements.
SInce receiving the news about the low levels of VIt D, I'm going to have to rethink my relationship with the sun. I have very fair skin with freckles and I never go outside without high factor protection. Instead, I'm going to have to forget the protection for a short time and let the sun get to me. I find health and wellbeing so fascinating, there are so many things like this to balance; being in the sun, what we should eat etch, etc.
kind regards.
Good supplements are perfectly acceptable as an alternative but 10-15 mins, in 5min bites between 11am and 3pm is all you need. Stop if you start to go pink though!
Thanks EileenH.
I will certainly ensure that instead of hiding away from the sun, I learn to enjoy it for short periods before I put on the Factor 30😀
I sat out in the sun for around ten minutes and doubled my vit D reading in three months. I have a very fair skin too. I did not go out at midday but waited until the afternoon.