Vitamin D deficiency
Posted , 124 users are following.
I've been unwell for on and off now for almost a year. I remember phoning off sick a couple of times before feeling tired and 'achy'. I thought I was just being lazy and this was psychosomatic. Then I started getting really ill when I developed a sudden onset of neck/shoulder pain which is still an on going problem now although the pain has turned into discomfort/ache which I have learned to manage doing exercise and stretches. I also feel sensitivity on other parts of my body (like invisible bruises.For 6 months I was coping with my neck/shoulder problem (symptoms are crawling/tingling sensation in the arm, sensitivity to touch like its bruised and cold feeling and dull ache on my shoulder blade).
Then gradually I started developing 'flu like symptoms' without cough or cold but with tiredness/fatigue and dizzy headache which are intermittent throughout the day, until 2 weeks later I started getting throbbing ache in my legs and eventually I couldn't sit all day without getting restless legs and crawling/tingling sensation in my legs which caused weakness in my legs and worse when I'm going upstairs - and my knees keeps clicking. I went to my doctors who prescribed me with naproxen. And told me that I had something called Reactive Arthritis, which i thought was a misdiagnosis. Overall I though that it could be viral related
This time I've been off work for a week when I started to feel better after a week on naproxen. I came back to work for a week feeling like i thought I recovered. Then boom 2 weeks later gradually the flu like symptom came back with extreme tiredness / fatigue and I've been in bed since. I'm still achy all the time regardless. I have no energy to do anything, even showering is a struggle. Ive been in bed most of the time, sometimes I try to go out with my husband for a few hours but I come back home absolutely exhausted and the soreness/headache i get is a different level. Most of the time I feel like my body is inflamed.
So i decided to get a second opinion and i went to see another GP who referred me for a blood test. A few days later, my results came through and I have Vitamin D deficiency. Everything else they tested seem fine.I have a better outlook now though after the diagnosis, apparently it will take months for the treatment to take effect. I guess now they found something they will stop investigating further (which worries me a little bit) but i guess its process of elimination so treat one thing at a time. Would be great to hear from others who also has this deficiency and whether the treatment was effective?
13 likes, 304 replies
brianmc1968 helenab
Posted
Hi everyone- 49 year old male, have always been in pretty good physical condition, rarely sick. Woke up with an awful sinus infection, dizziness, fatigue, and tingling in my left foot on December 23, 2016. Over the next few days, the tingling got worse, spreading up my ankles and calves. Started feeling extreme burning and numbness, primarily in my left foot. As most physicians go on holiday during Christmas holidays, I couldn't see my GP. I am usually an even keel person, but I noted, like many of us, that I was blue, and prone to bursting into tears at the slightest thing. Went to see my GP on 1/2. He did a full workup, ordered some blood tests. All came up fine. He was pretty well stumped, so he ordered a SED rate and CRP test to look for inflammation. All came up perfectly fine.
In the middle of January, I started developing the terrible tingling and burning in my hands. My GP slapped a couple of carpal tunnel wrist braces and told me to rest them.
My podiatrist told me that I had a Morton's Neuroma in my left foot and shot it full of steroids. Honestly, that only made it worse.
My wife, who is a nurse, suggested that he put in an order for some nutritional deficiency tests (magnesium, b12, potassium, and vitamin D). He agreed, and we foudn that all were normal except my D, which was 10. He put me on 50000 IU D2 weekly- on February 2! It's amazing how long it took them to sort things out! After taking the D2 for a month, I insisted that he put me on D3, as the literature that I have read indicates that D3 is more effective.
I have been on the D2/D3 for 6 weeks now, and have seen some of the symptoms diminish- primarily the emotional blueness and the burning in my extremities. Much of the tingling has diminished greatly, although it is still there. Anxiety is my biggest battle, to be honest. I have to tell myself daily that I will eventually get better. I've found that the day I take my 50,000 IU pill, my symptoms tend to decrease, then start to ramp up again right before I am to take the next one. I've also had some palpitations in my chest, although everything seems to be normal with my heart. I think that those are the worst. Also, the muscle twitching is not much fun- just watching your thigh twitch voluntarily is kind of frightning. Finally, I've had serial respiratory infections. It's been a mild winter here, so I've had a cough off and on for most of the last few months.
Beside the 50000 IU, I am eating as much salmon as I can afford, and I am getting 1000 IU in my multivitamin. And of course, for days when it is warm enough, I try to get out in the sun and absorb some rays.
I'm also supplementing magnesium (orally and epsom salt baths), Vitamin K2, and high-quality calcium. The magnesium in particular seems to help with the anxiety and tingling.
I am considering swapping over to 10000 IU pills daily rather than the weekly 50000 IU for the next month, as my GP wants me to be re-tested on 5/2. I am wondering if the daily dosage will help to even out the valleys that I experience in the days before I take the 50000 IU pill. Anyone have experience?
Overall, I do believe that I am getting better. These forums have been a mental help for me to realize that I'm not alone. I'll stay in touch with you all as I progress through the journey.
brianmc1968
Posted
Would also say that I do have good days and bad days. Some times, I feel well enough to exercise (running, aerobics, strength), and some days, it's all I can do to get out of bed.
Jaybelle brianmc1968
Posted
Hi Brian,
All of this sounds very familiar to us on here. The anxiety, weepiness, up and down days, wondering if you'll EVER get better, etc. I've been there, and I'm now back there, unfortunately (too low a maintenance dose of vit D. Oops.) It sounds like you're doing EVERYTHING you could/should be doing (with the exception of a holiday in the sun..?), but treat yourself gently and accept that it WILL be a bumpy, stop-start ride to recovery (like you, yesterday I was full of beans, today I'm wading through invisible treacle). It will also take longer than your GP will probably admit to reach recovery - just because your blood levels have reached an acceptable number does not mean that the metabolic bone processes have reversed and recovered. Listen to your body and treat yourself with kindness and patience.
Wishing you well.
:-)
rosemary48300 Jaybelle
Posted
A day. As you reach peaks and lies.
Anyhow I was told by GP it will take 5months to get back 50per cent of my energy back. My level of vitamin D3 is 12.
fishy79665 helenab
Posted
I read up a bit on Vitamin D about 5 years ago and tried a supplement, I cant remember how long for. I have tried quite a few different supplements and usually give them a chance over a good time period. I think I was probably trying to reduce the number of colds I catch and gave up on them as from that perspective I believed I wasn’t gaining anything. I think I must have picked up on recent publicity of Vit D and decided to give them a try again, then I found I could get a simple test with a finger prick test I ordered through City Assays UK, it was easy to do and only cost about £28 and I thought at least I would know if there was a need to supplement. While I was waiting the 5 days or so for the result to be emailed to me I download Dr MF Holick’s book The Vitamin D Solution. I couldn’t stop reading it as it is probably the most convincing health books I have ever read and felt I had gained a lot of knowledge on the subject. When I got the result I was surprised how low my status was, in the UK they use the SI system and my result was 32.4 nmol/L INSUFFICIENCY Interpretive Guide: (25-hydroxyvitamin D 3 : 29.6 nmol/L, 25-hydroxyvitamin D 2 : 2.8 nmol/L)When some people post that they are say ‘12’ it would help if they said what unit bases is being used, my 32.4nmol/L equates to about 13 ng/ml. The testing company rate this as Insufficient but they are not following the rates set by a lot of bodies now. My level is really Deficient and almost as soon as I realised I’ve started to feel much worse and wished I hadn’t stopped taking suppliments 5 years ago!
This forum has helped a lot as some of the symptoms I first heard about didn’t really match mine but on here I am hearing about the feeling of fainting which is definitely the worst symptom I have. Now I think about it a lot of symptoms I have, have been there for so many years/ decades I don’t even think about them as they become a part of life. I am really self medicating as I have very little faith in Doctor’s and anticipate sitting in the waiting room feeling I wont be taken seriously and fobbed off with some drug or other- I don’t really do medication.
Also I have listened to so much health advice over the years like use suntan cream avoid the sun, don’t eat fat etc etc. the advice all eventually gets turned on it’s head. But I am convinced by the advice Dr Holick gives in his book and from taking no suppliments ( If you eat a balanced diet you don’t need them- more rubbish advice from the NHS) I am now taking a vit D3 2000iu caps x 2or 3 per day, a multivit and magnesium/calcium tab. I’m thinking of upping the vit D to 8000 iu / day.
Even 5 years ago I was aware of the times of year/ day when UVB was available from downloading Navy azmuth tables. Now I can get data online from a weather station in Reading and looking at 2016 historic data there’s more UVB available in spring than is commonly thought. I am lucky I can get home for about 50mins in my lunch hour and plan grabbing this benefit from the sun ASAP. I think it needs to be about 3 on the UVI scale to start to be able to synthesise some Vit D. I am hoping the real thing might speed up my recovery which will no doubt take many months. Roll on the summer! I have only been taking the vitamin D3 for 2 weeks but think I am seeing an improvement in my IBS- I might be jinxing it by saying so!
I have read a little on Magnesium but it confuses me that they seem to make the same claims for cure-all benefits that the vitamin D people make. I’m taking some as long as it doesn’t upset my IBS, I might try a spray if I get problems. I don’t really want to read a book on this as I might start to lose faith in the vitamin D- no wonder the public get confused and apathetic to health advice
Good luck to all sufferers and if I get some good results in my recovery or learn any tips along the way I will post them on here
funfunkyfem helenab
Posted
I have been tired and depressed for quite some time just put it down to a break up and over worked, but then my eyes started to be dry and sore, my muscles ached, neck ache, and itchy skin, I went to the dr who said I had a virus and when I told her I'd lost a lot of weight a few years before for no particular reason but never came dr, she suggested a blood test just to be sure, I've been diagnosed with very low Vitamin D levels, and think I've suffered along time as in winter I always get miserable and in summer almost euphoric, I used to eat a lot of good healthy foods, avacados, peppers, leafs, hummus, and recently haven't so I do think this has made the difference in how ill I feel at the moment.
I have started eating more healthy just this week and taking vitamins daily and high vitamin D, I have also been eating egg yolks and feta cheese, I don't like oily fish or beef liver 😫 I have read some people have still been ill 8 months later and I really don't want that to happen as I will not be able to work if I feel like this everyday, anybody who has Had this and recovered quickly plz give me advice thank you in advance.
Jaybelle funfunkyfem
Posted
Really sorry to hear that you're feeling so poorly. Unfortunately, if you have been D deficient for a long time you just can't recover overnight. Part of respecting and nurturing yourself is acknowledging that you might need to make changes to your routines, rest, work hours or capacity for some time. Don't worry too much about dietary sources of vitamin D - it's not principally obtained from foods; it's a hormone that can be generated via sunlight on skin or through a supplement - are you taking >40,000IU per week for at least 12 weeks to treat the deficiency?
I have never heard of dry eyes being a specific effect of D deficiency, but it IS typical of the autoimmune diseases that tend to go along with D deficiency in some people, specifically Sjogren's syndrome. Blood tests can help to determine this - have you had this work done?
Wishing you well, soonest!
:-)
funfunkyfem
Posted
Jay belle thank you for your reply,
I have been given D3 sunvit 20,000iu weekly for 8 weeks and told to take multi vitamins for life, I have had blood tests but I'm not sure if I would have been tested for Sjogren syndrome, they did say my liver was ok and I didn't have diabetes and cholesterol slightly high but nothing to worry about,so I'm not sure, is it something you have to ask to be tested for do you know?
Jaybelle funfunkyfem
Posted
The standard dose of D to treat deficiency in the UK (according to most NHS health trusts) is 40k-60k IU per week for between 8 and 12 weeks. 20k IU for actual deficiency seems rather low.
You would not be tested for Sjogren's unless your doctor really suspected it and you had complained of serious eye, and possibly mouth, dryness. Autoimmune issues seem to crop up often alongside D deficiency, so worth bearing in mind even if you don't feel you need to do anything right now. (My free gift was autoimmune thyroid desease. Great!)
I think it's worth asking your doctor whether s/he has a particular reason for setting your D dose so low if you are actually in the range of deficiency, as opposed to insufficiency. 'Cos 20k IU/wk x8 ain't likely to get your blood levels back into the sufficient range.
You need to make it very clear if you don't feel well enough to work - GPs seem to have very little idea of how hard D deficiency (and the osteomalacia it causes) can hit and how long it can take to resolve. Just because your blood level is back to normal doesn't mean your bones have re-mineralised or your muscles recovered, etc.
Wishing you well.
:-)
LyLy helenab
Posted
How is your and your husband's vitamin d recovery progress? I am vitamin d deficient at 13 after 8 weeks I raised to 20. Was taking 50,000iu d2 but after the fourth week I felt worser. More fatigue, weaker and extremely thirsty. I cut back to 5,000iu d3 but symptoms didn't improve. D3 used up magnesium and potassium. Now I am just working on getting my magnesium levels up and just get vitamin d natural from the sun without me having to balance magnesium and vitamin k2. Vitamin d can cause side effects different than toxicity so be careful. Some people will have no symptoms and a few percentage of people will when taking d3.
Vitamin d deficiency hit me from nowhere in October. It came on as flu like symptoms with lightheaded feeling faint, then came the fatigue. Never felt this tired and exhausted in my life. Then the neck and shoulder pain, muscle weakness, headpressure, joints popping, hands and feet getting heavy at night, fingers going numb, dull chest pains, elevated blood pressure, odd heart sensation, shortness of breath.
Been to ENT and neurologist all test came back normal. Except vitamin d. But doctors says vitamin d can't cause all these symptoms. Now I am going to cardiologist just did 48hr Holter monitor now waiting to do echocardiogram. It's been 7 months trying to find a diagnosis is frustrating.
Jaybelle LyLy
Posted
The osteomalacia caused by D deficiency already causes imbalances in your blood mineral profile - magnesium, potassium, calcium, phosphate. D just moves them preferentially into your bones to rebuild them A level of 25ohD at 20 is still deficient and relying solely on sunlight to raise your levels to >50 nnmol/L could take a long time and expose your skin to a lot of UV radiation if you are exposing yourself to more than half an hour or so a day. Seven months is only halfway along for treating longstanding D deficiency osteomalacia; it took me 14 months the first time to achieve remineralisation of my bones, restoration of wasted muscle and be in a place where pain and fatigue were mostly gone.
High dose D supplementation does cause additional tenderness in some people; it does in me, but the effects of D deficiency osteomalacia are so much worse that it really feels like the lesser of two evils.
Wishing you well. You're halfway there!
:-)
fishy79665 LyLy
Posted
Hi taro93814,
I have times when my symptoms get on top of me, I'm scared I will collapse at work or somewhere public, that is my biggest worry. So I need to have a plan in place to reduce the worry and avoid a downward spiral of dispare. It makes sense to get checked out to rule out any other medical problems and not just assume it's all down to low vit D. However I'm not following my own advice and wont go to the Doctors unless I make no progress. I'm sure Doctors are all to quick to say certain symptoms dont match vit D difficiency. I am confident that it affects people in different ways as vit D is needed for so many bodily processes. I started taking 2000iu vit D and gradually stepped it up to 6000iu, but after 2 weeks the feeling of fainting seemed to get much worse. I'm pretty sure I cannot take that level of vit D. I would be really down about it if it wasn't for my plan which is as follows:-
1) Temporarily cut out high dose vit D- this already seems to be reducing the backwards step I took
2) Increase magneseium intake, using transdermal oil, eating as many foods high in mag (oats, buckwheat flakes, spinach, pumpkins seeds) it's in a lot of foods! and a mag suppliment
3) Getting as much sensible sun exposure as posible- I accidentally over exposed today and am slightly burnt- strange as some would say it's too early in the season here in the UK- they should look at UV reports- 5.1 today!
4) Gradually increase Vit D suppliments and workout what my system will cope with
5) Keep a diary of how my symptoms are, this includes feeling of fainting, sleep quality, IBS symptons- which have already improved more than I have experienced before, UV levels and how long and % of body exposed to the sun etc
I think everyone is different and we need different approaches- I read the best book of vit D but my body doesn't neccessarily want to conform with the high dose thing. But I am sure there is more than one way to heal Hope this helps a little
LyLy fishy79665
Posted
Hi fishy, I totally agree with you. The only vitamin d I take is from my whole foods multivitamin, diet, and sun. I also supplement with magnesium, magnesium oil, and boron. I too wonder if all my symptoms are all from vitamin d deficiency. I've been to ENT, neurologist, now cardiologist. Frustrating when all testing comes back negative and I feel unwell.
I am going back to my doctor to see if there is any other tests under the sun that I can take to eliminate the reasons for my crazy fatigue, weakness, lightheaded, irregular blood pressure. I will probably ask her to refer me to an endo to get a full thyroid panel, check adrenals and check hormones.
Being exhausted for no reason has taken its toll on me. Instead of being able to care for my kids, they have to care for me. I just want to get better for the sake of my family. Having them see me getting worse instead of better is the worse part.
Seeing so many specialist and no diagnosis is bittersweet.
I wish you a speedy recovery.
MightyBoosh helenab
Posted
Hi there people, so glad I've found this forum as i think it's finally made me understand what's going on with my body... Hopefully.
For years now I've been suffering from a general feeling of "unwell" that's started to ruin my life, it's a combination of many symptoms leading to one big problem, these symptoms include:
* Always feeling tired / sleeping during the day
* Aching bones/joints/muscles. Sometimes i feel so bad that i can hardly move! I've actually lost jobs over this.
* Foggy mind / short term memory loss and dizzy spells.
* Generally feeling hot, not being able to regulate my temperature and night sweats.
* Constantly having bouts of diarrhoea.
* Seem to catch all the bugs that are going around.
* Very low mood / slight depression maybe.
I've been to the doctors countless times about this but every blood test they do comes back fine, I always get told they're looking for a wide range of things but i never ask what because, well... They're the experts right? I usually get told to improve my diet and get on some multivitamins.
So today i get the results of my latest batch of blood tests and its shown that i have a vitamin D deficiency and my levels are very low, one of the lowest his seen in a while, I really don't understand why this is the first time it's showed up on the blood test, could this really be the first time they've checked my vitamin D levels? But now i know I'm deficient it's nice to see my symptoms really fit the condition for once.
fishy79665 MightyBoosh
Posted
Hi MightyBoosh,
What vitamin D level are you then? I think it helps people to know as if their Doctor says at their status they shouldn't experience certain syptoms then at least they can see what 'real people' actually experience at different levels of deficiency/ insufficiency. Although of course its always possible other illnesses or deficiencies are coming into play
Jaybelle MightyBoosh
Posted
Hi,
All these symptoms are familiar to us. Take the D supplement and any additionals you like (such as magnesium and vitamin K) and hold tight. It could take anywhere from three to fourteen months for you to feel like yourself again, so don't be shy with your doctor if you don't feel up to working full time for several months.
All the best,
?:-)
tata92410 MightyBoosh
Posted