Recently diagnosed with Vitamin D deficiency

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?

 

There is no 'they' - I'm just under the care of my GP with no specialists or referrals, and there are no tests for osteomalacia: on a bone density scan it can't be distinguished from osteoporosis unless there are pseudofractures present. The diagnosis is given based on vitamin D status and symptoms - if your bones and joints are tender when squeezed, it's because of skeletal softening due to osteomalacia. A tender ribcage as well is absolutely diagnostic. 

On a cautionary note, I paid a lot of money to see a professor of rheumatology privately six years ago who prodded me a bit and when I squeaked pronounced that I had fibromyalgia. He took less than a minute to reach this decision and did not order any blood tests or scans.  I'd been through so many investigations; lupus, rheumatoid arthritis, MS, psychosomatic disorders, hypochondria and even malingering! So I share your anger, but awareness of the consequences of vitamin D deficiency really is a new field - doctors just haven't been aware of this until very recently.

If you've got good orthotics, you are probably giving your feet the best possible support while your skeleton remineralises itself as your vitamin D levels rise. I found the pain significantly worse while in the early weeks of taking a high dose D supplement and a mineral supplement. I crossed my fingers and hoped this was just the price of remineralisation, and I can definitely go for longer now before the pain and stiffness takes over although I can't manage a full week at work. 

Hang in there. As I say, I am only just beginning to see the very first signs that things might be getting better, so don't expect too much for the next couple of months. 

Take care.

:-)

I have been diagnosed with a borderline vit d deficiency. Can this really explain my reduced mobility? Started supplementing at 1,000 iu once day a month ago and after a follow up visit to drs now taking 800iu four times a day for a week. No change in symptoms in fact think they're getting worse- worried it could be something else really don't know what to do for the best

There are other things that can cause similar symptoms - depending on your age something like polymyalgia rheumatica for example (usually in over 50s, people in the 40s can develop it). But the first thing to do is sort out the vit D deficiency - but using much higher doses than that. Something like 25,000 IU once a week for 4 months is used here, in the UK they recommend 60,000 IU per week, either as a single dose of 3x 20,000 IU, for about 8 weeks and check the level again. The doses you are on will take forever tp get the levels up.

Thanks for your reply im in my early 40s so this has really knocked me sideways. ive been referred on to a rhuematologist but not due to go back to the GP for a repeat blood test until late March i think I will give them a ring.

 

Has your GP done any other tests such as ESR and CRP which are inflammatory markers? If it were the polymyalgia they are raised in about 80% of patients, not for the rest. 

I suspect many doctors know a bit about vit D deficiency but don't realise how bad it can be nor how difficult it can be to get the levels up. If you are just "borderline" it would be surprising if it were just that making you feel so ill - my daughter was still working as a paramedic and my husband felt fine with vit D levels in single figures! 

You haven't had a virus before this happened have you? Post-viral fatigue can take a long time to clear up.

Good luck and hope the rheumy appt comes through quickly - but I doubt it somehow.

I just got diagnosed with low vitamin D also.. 13 is my number as of last week.

Dr put me on 50,000 of vitamin D. One pill once a week for 3 months. Then see my GP.

So very exhausting for many years getting the run around!

Haven't been able to work the last 4-5 months!

All of you fellow vitamin D deficient people ...how long before I'm human again and can function??

Hi there, I am new to this discussion, my numbers have been around the 30/40 level over the last couple of years so my GP keeps prescribing vitamin d but I'm still reluctant as every time I take anything with vitamin d in it I get so tired? Will be body get used to it and is it only a transitional thing? 

Thanks xx

Hi there, I am new to this discussion, my numbers have been around the 30/40 level over the last couple of years so my GP keeps prescribing vitamin d but I'm still reluctant as every time I take anything with vitamin d in it I get so tired? Will be body get used to it and is it only a transitional thing? 

Thanks xx

I would have thought if you take vit D for around three months you should get your levels up to around normal.

Hello, my 21 year old son mentioned being "tired" in the past, but he is a college student so it is expected to some degree. Suddenly, he became EXHAUSTED! He said he did not feel sick, just slept most of day/ night. Awake only 6-8 hours/ day. It became very difficult for him to study. He was diagnosed with vitamin D deficiency with a level of 12. He just started the treatment of 50,000 IU weekly for 12 weeks.

For the past 1 & 1/2 years he has been taking PPI's for acid reflux. I wonder if they contributed to the low vit D and/ or if they can impede absorption with the supplement.

The GP and GI doctors both say they do not think the exhaustion would be from a vit D level of 12. However, when I read all of these posts it appears many are exhausted from a vit D deficiency. There are still a few tests pending. Checking for tick diseases, Epstein Barre, Celiac, Hep A & PTH.

I got him a probiotic and Omega 3 fish oil to help with absorption. I had no idea Vitamin D was something I had to worry about! We have been to so many doctor appointments (for the reflux) in the past year and a half and it was never mentioned or tested.

I do not want to miss anything else that could be wrong in addition to the Vit d deficiency. How long does it take to feel some improvement from the supplements? I feel desperate to help him get back on his feet again and would appreciate any suggestions. Although, I am thankful to not be alone in this, I am sorry that you all have suffered.

D deficiency certainly does cause awful fatigue, but for a 21 year old at college there are other things that could also be causing this, and in fact there was a young guy posting on here about a year ago, for whom the D deficiency turned out to be a minor contributor, if memory serves, and the main problem was that he had had glandular fever/Epstein Barr that he had not recovered from, so I'd say definitely wait for those results too.

College is a time of great mixing of bugs in fresh populations as people become exposed to organisms their immune systems have never seen before, and there seems to be a high level of 'ME'/chronic fatigue-type illnesses in this population (parentheses becaues I am am very wary of naming syndromes that do not have an established cause, having been misdiagnosed myself). 

Long term PPI use is definitely associated with vitamin and mineral absorption issues, particularly for calcium, whose metabolism is regulated by vitamin D (See Association of Long-term Proton Pump Inhibitor Therapy with Bone Fractures and effects on Absorption of Calcium, Vitamin B12, Iron, and Magnesium; Tetsuhide Ito, MD, PhD1 and Robert T. Jensen, MD2, if interested). D is principally generated through exposure to sunlight, but if already low, then the minor addition of dietary vitamin D being interfered with by PPIs might tip the situation over into deficiency and all of its associated ailments. He might want to consider coming off them to improve his absorption of the high dose supplement and treat the underlying problem through dietary modification - low fat/low FODMAP/small meals/no caffeine/no-or-low alcohol/going to bed on an empty stomach - whatever works to control his reflux. (I did this myself to get off PPIs.)  

My first D deficiency took 14 months of supplements to get back to somewhere I recognised as myself, but a friend of mine who was D deficient following breastfeeding bounced back to her normal self after 3 months or so, but however fast or slow it is, it certainly isn't overnight. 

Wishing your son well. I hope you get some answers that can be treated easily! 

:-)

The main source of vit D is from the sun's action on the skin - when the sun is high enough in the sky so mainly only in the summer at midday. You get less than 10% of your vit D requirement from food - except in the USA where some foods are fortified but if you don't drink milk or orange juice you won't get it. Only a few cereals are fortified in Europe - fortification was banned many years ago. So you probably don't have much to worry about there - although there MAY be a problem with the supplements if there IS an absorption problem.

The most likely reason for the low level is teenagers not going out in the sun (staying in playing on their screens!) or covering up and/or using high factor sunscreens. Many of his generation are potentially deficient in vit D simply because of the pushing of information about skin cancer and "slip, slap, slop" for the last 30 years. Factor 8 sunscreen can reduce the amount of vit D made by over 90%! Dark skin is also a factor - ethinic origin plays a major role there - and even a light suntan in white skinned people is equivalent to Factor 12 sunscreen. 

The other possibilty I'm sure the doctors are bearing in mind is an autoimmune disorder of some sort - low vit D levels are often found in them though it isn't known whether it is cause or effect. They also cause excessive fatigue. Coeliac disorder is only one - but I'd have expected other symptoms to suggest that. So if the GP and gastro don't get an answer for you - try a rheumatologist. They deal with many of the autoimmune disorders and are perhaps more aware of the ream of tests to do. The reflux may be coincidental but it can also be a symptom in some autoimmune disorders. This paper

Gastrointestinal Manifestations in Systemic Autoimmune Diseases  by M. COJOCARU, MD, PhD, Inimioara Mihaela COJOCARU, MD, PhD, Isabela SILOSI, MD, PhD, and Camelia Doina VRABIE, MD, PhD

outlines the possible causes of reflux in autoimmune disorders. It may help you ask the right questions of your GP if they get stuck. However - don't jump tp the conclusion he has any one of these disorders because there would most likely have been other signs and symptoms for them.

On high dose vit D the level should improve within the period of the course of vit D and they should check it at the end. Sometimes if the deficiency was very profound the blood level may fall again quite quickly after the tablets stop so it should be checked again after a few months. However - it may take a bit longer for him to be back to normal. 

Good luck - and do come back and tell us what they find.

I've just found this website and reading the comments it's good to know that I'm not alone which I must admit over the past few months I've certainly felt that.  

I was diagnosed with osteomalacia about 3 months ago. My vit d levels were undetectable. I have been prescribed 20,000mg twice a week for 7 weeks, I'm now on my 6th week and I can't say I've seen much improvement. After 7 weeks I'll only be on a maintenance dose of 1000 mg a day which is worrying. I've got blood tests in a few weeks so I'll find out what my levels are then and go from there.

A few weeks ago I was prescribed amatriptalyne for pain relieve but found that it didn't make any difference if any thing I felt worse so I need to look at other pain meds as I really don't want to start on the pain patches I've been given.

Before all this started I'd recently started a new full time job which involved heavy manual lifting, constant driving and walking for miles, needless to say I didn't see out my probation period. I have just this week started a new part time sit down job as I can't just sit around doing nothing. But reading your advice and a lot of comments on here has made me realise that I have got a serious health problem that is not going to resolve itself overnight. Apparently to have undetectable vit d I've been ill for years and not known it and probably wouldn't of done if it hadn't been for my mobility going to pot and the horrendous pain and stiffness. But now with this diagnosis a lot of things make sense, especially the fatigue, pins and needles, aches and pains, cramps and the unsteadiness and generally feeling unwell but not knowing why. 

I was looking for answers as to how long it would take me to recover from or at least start being able to function properly again despite being told that I will probably never be how I was before and that I'll be on medication for the rest of my life and I'm not even 50 yet.

So along with you, I'm trying to come to terms of what my limitations are and that some days are going to be ok but on other days I'm going to need my walking stick or even sticks and then on other days I'll just be in bed. But 1 of these days I will walk down the road again, be able to stand up for longer than 5 minutes to cook a dinner or do the shopping without coming home and crying because I'm in so much pain!!!

jojo, you sound like me! I have had to stop working in the last year, pain everywhere, and also muscular pain. 5 weeks ago I started on d3 liquid of 10,000 ius a day, recently my pain has got worse, but I am hoping it is remineralising my bones and that in a few weeks the pain will lessen.

How are you doing now? I am thinking this could take many months to correct as so many processes are dependent on d3 and to get to the point of such debilitating pain means the d3 deficiency has been going on for a very long time.

I only got a clue I was d deficient when I went in for an arthroscopy and showed a nurse several patches of scaly skin on my hands, she said it looked like vit d deficiency. I took very little notice, but several months later my hands got to the point the skin was cracking and painful, so I looked into vit d deficiency, only to find it causes bone and muscle pain, both of which I've suffered from for many years but which became intolerably about 10 months ago, hence quitting work.

I went to my doc and told her, but she said they won't do vit d tests because everyone is defficient and should supplement!!!!!

I've been on 10,000 ius a day for the last 5 weeks. I just hope within a year I see an improvement!

" she said they won't do vit d tests because everyone is defficient and should supplement!!!!!"

Funny - loads of doctors tell us not to supplementbecause we might end up with high levels...

But the main reason for doing a vit D test is to see if YOU are deficient and NEED vit D - and HOW MUCH you need. My husband had no symptoms at all (except raised blood pressure, but that's "normal" at 65 right?) and his vit D was a bouncing 7 (yes, SEVEN). Once the vit D level was OK - his BP had also gone down a fair bit.

Given the high dose you are taking - your doctor does need to check you after about 8 to 10 weeks to be sure you are now replete. And adjust the dose down probably.

And what is she going to say if the vit D supplementation doesn't stop the symptoms? She won't know if you have got it to a higher level - and while the symptoms may be the sign of low vit D, they could also be the symptoms of a disorder what causes low vit D. It isn't unusual.

I have given up on doctors and the nhs. There's no point going to them, I have suffered for years and they misdiagnose and or scoff at my symptoms.

My blood pressure is ok, I at least requested they did that.

The vit d does seem to have improved my skin condition, the skin has healed and is a lot less scaly, but if it takes 5 weeks to get that level of repair of skin, it'll probably take many months of d3 to repair bones and muscle.

I will not go to my doctor anymore. I don't trust doctors and conventional medicine anymore.

I have found more help on various facebook pages. I have to admit, I have never liked being in direct sun and spend most of my time indoors, so really it's my own fault that I am so deficient.

Hi Susan. Sorry to hear you are feeling so awful. I went through the whole D deficiency/osteomalacia thing a couple of years ago. In my case it took several months of 50k iU/wk then 35k iU/wk of supplementation to get my D levels back into the medium-high range. I had much worse pain in the first few months of supplementation. At about 7mts I felt I might be turning a corner. At about 10 mts I really started trying to regain my lost muscle tone through physical activity and training as my body allowed (not always very predictable) and after 14 mts, yes 14, I felt almost back to my self again, especially emotionally - the mental/psychic effects of D-def/osteomalacia were almost worse than the physical effects. 

So it is possible to come back, even though there were times I seriously contemplated giving up on life. 

This is only my experience, but if I were to suggest any advice, it would be two things:

A) KEEP REQUESTING until you get your blood test. Just ask to see different docs in your practice until you get one who says 'Yes, decades of sun avoidance, symptoms of skin problems and osteomalacia... let's do a cheap and perfectly standard vit D test!' This isn't for the benefit of the GPs but for YOU, so that you will know how your supplementation is coming on and when to ease back a bit. (N.B. there was a long lag between my levels coming up and resolution of my symptoms - don't get giddy, now). 

B) Have a look at the books and Youtube lectures/interviews, etc. of Dr (actually, Prof.)  Michael Holick. His books are easy to read, informative and incredibly reassuring. It was his research that led to the discovery of the form of vitamin D formed by our bodies and he has remained a leading researcher, if not the leader, in the field ever since. When my doctor had nothing to say except to offer me antidepressants for my unreasonable sadness, this man's knowledge and vocation kept me sane until I recovered.  

All best wishes for your recovery. 

Thanks Jaybelle for your advise and info regarding pain during supplementing with d3, as I am now experiencing left ankle pain, all of a sudden even though supplementing. 

14 months is a long time but I am pleased you are getting better. I know what you mean about giving up, sometimes I have thought that with all this pain (but before I found out that d deficiency was the cause) I thought I'd be better off signing for dignitas and euthanasia!

I do think I am on the right track as my skin is so much better, and I am prepared to keep at this for as long as it takes. Some days my hips haven't been so bad, then next day a new pain or same pains back again, but remineralising bone and feeding muscle will take a long time, so now there is hope, I will keep at it.

Regarding my doctor, I have had enough, I was misdiagnosed re a swollen painful knee, told it was merely arthritis and limped on for more than a year before I had a new mri which was diagnosed. So all that time I was treated as a nuisance (twice I went to doc thinking the unrelenting swelling was a blood clot). I've just had it. I can't take even thinking about going back.

 

Since I last posted I've had a stroke but somehow I have still been in a lot of pain in my legs but they are not as swollen as they were. I've got another appointment in April with the rheumatologist hopefully I'll get some of the answers I want this time one way or another.