Vitamin D deficiency symptoms

With all the sites out there that have info on Vitamin D, their just doesn't seem to be one that has all the symptoms that can accompany vitamin d deficiency. I'm going to list my symptoms, so that others may have some insight, in layman's terms. I hope anyone else with the deficiency would also post theirs.

[johnnymutt]

Symptoms I have had with Vitamin D Deficiency

Head
-light flashing in corner of left eye with movement. It comes and goes about 6 months and lasts for about a month
-jaw or mouth gets severe cramps
-a very severe sharp electrical type pain that shoots from my temple through my eye, and into my jaw. I lasts only a second, but can happen many times a day. Occurs every for or five months and lasts appx. a week or two
-left eyelid twitches very fast, can last a few minutes to several hours
-consistently feeling dizzy, like I've shifted a couple of inches one direction or the other, without really moving at all. I have been checked many times for ear infections or problems.
-Having petite mal seizures

Hands
-about four months ago I had sudden loss of strength in my right hand, with no pain, a couple of days later, my left hand followed suit. (this is when my doctor suspected MS). The weakness lasted about a month.
-four months later my hands went weak again, this time accompanied with pain. The pain was not specific, just all over pain. I have had carpal tunnel surgery in the past, and I currently have carpal tunnel again, but this was a different kind of pain and weakness.
-Currently both hands have about 40% of the strength that I had 4 months ago.

Arms
-Right arm started having a strange vibrating sensation all through it. The muscles started feeling tight. As the muscle tightened up, pain began to accompany it.  A really sore like feeling, like you have worked out way to hard. Eventually, the whole arm was in pain, and the elbow started hurting really badly, like the bone had been bruised or something.
-2 months after my right arm went bad ( I could barely use it at work ) my left arm. right and left shoulder began having the same problems.
-Currently both arms are in pain, practically unusable at work.
-I get a feeling like a needle is poking in my arm, like when you are getting a shot, quite often now. It's very painful, and pulsates repeatedly, last for days at a time.

Torso
-When my last series of symptoms started, my torso started having problems as well. I started noticing that was short on air. My muscles are squeezing my lungs almost continuously. I cannot hold my breath for more than 25 secs now.
-Muscle pain in both sides of the rib area, like they have been worked way to hard
-My lower back always hurts, feeling like a dull ache, sometimes feeling like I pulled a muscles
-I have a buzzing sensation at my tailbone at times, feels like a cell phone is vibrating.
-Problems swallowing, food goes into lungs when eating

Legs and feet
-The most prominent of the pain, I think due to the fact that I am on my feet all day, is my leg and foot pain.
-The feet feel like I am walking on marbles all day, causing tremendous pain. This pain turned on like a light switch, it didn't slowly get worse, it was not there one day, and the next it was.
-Both legs from the ankle up past the knees, felt like my bones and muscles were completely destroyed. I had no strength in either of them, meaning it felt like I was hauling around to stumps of lead. Getting through the day was miserable.
-Joints in my feet and legs were very painful, making it very hard to walk up and down stairs
-Constant buzzing sensation on the souls of my feet now
-Feeling of bugs crawling up my legs all the time
-Sharp stabbing pains, like I'm being jabbed with a spike or very large needle
-Burning sensation, mostly on the souls of my feet, but sometimes anywhere on my legs
-Right leg, twice before, has had weird hot, electrical type sensation, almost felt like my skin on my leg was wrapped tightly with a barbed wire fence
-right leg has a shifting buzzing sensation, like I have a cell phone set to vibrate, that comes and goes. It shifts from just under my hip, to just above my knee

Bladder
-I have had now for 3 or so months tons of bladder problems. Mostly I cannot get all of the urine out. I will really have to go bad, I urinate, and only a little comes out. The sensation of having to go will just stop. I often now, just sit down and wait. Because a couple of minutes later, I will have to go again. It often takes about 20 minutes to fully go now.
-Then sometimes I will be able to empty my bladder completely, but the amount of times I go is a lot. I get so dehydrated it isn't funny, as all the symptoms of dehydration soon follow. It takes me days to rehydrate.

Thirst
I have had for a long time now, a pretty much unquenchable thirst. I am always thirsty.

Cramps
-leg cramps in the back of my ham strings, comes and goes often
-cramps in the calf of my leg
-cramps in my feet, causing my toes to curl upwards
-cramps in my sides around the rib cage area
-cramps in my diaphragm
-hand cramp, right hand only, causing finger to pull in the wrong direction


Hot poking needle
-sensation of a hot needle poking me in the skin, happens all over the body, but mostly in the back. Can last several days at times.



I have sense all of this has started, gotten a Neurologist, who in fact found the Deficiency. But what he found, surprised the heck out of me. I now have:
-Deep tendon reflexes in my right leg are gone
-Abnormal gait in both legs, mostly right
-Loss of sensation in both arms and legs
-Loss of sense of temperature in bottom of both legs
-I cannot stand up with my eyes closed (hoffman sign)

I have had multiple MRI's, over 50 blood work ups, a CT scan. Needless to say, I have been through the ringer with doctors. I was thought at one time to have MS. I have been diagnosed with Bipolor syndrome, Depression, Tourettes syndrome, Polyneuropathy, and treated with some really awful drugs, like anti-psychotics and nerve medicines. It has not been a fun ride for me. I have been experiencing most of these symptoms for the last 6 years, and the painful ones for the last 3 years.I am certain I have left out some symptoms, but who could remember them all.

I hope this helps someone with similar problems.

Good luck, remember 85% of Americans are Deficient of Vitamin D, it's only a simple blood draw to discover the problem.

[Phyllis2010]

Here are my symptoms:

I've been going through this for 3 months with no diagnosis of an overall syndrome or disease.

Presenting symptoms (March) - the walking and urination problems were gradual and episodic in onset.
1) Abnormal gain/ veer to the left, unsteady
2) shorter time to muscle fatigue
3) fasculations, legs and torso (resolved)
4) Nocturia/thirst
5) Bowel frequency
6) Left thigh front - dead nerve sensation
7) chills - cold/hands feet, sometimes shaky (might be connection to carb intake) - increased sensitivity to cold
8) Rapid heart beat
9) Feels like metabolism turned way up
10) pins and needles (neuropathy) and intermittent neurogenic claudication in legs develop within the month; though pins and needles also in hands/arms/chin

Current symptoms:
1) Gait abnormality/unsteadiness (no longer veer to left as much possibly because damaged muscle in left leg may be healing)
2) Weight loss - Current weight 98-102 pounds
3) Nervous as if metabolism revved up, anxious
4) Night time thirst/nocturia worsened after taking vitamin d 50,000 IU
5) Rapid heart beat, palpitations - worsened with vitamin d side effects
6) Weight: 112 pounds (heavy for me usual weight 104-108)
7) More frequent bowel movements
8) Muscle weakness particularly in legs also arms sometimes, exercise intolerance, muscle wasting
9) Eyes more sensitive to  light, increased floaters
10) New onset back pain, sore muscles in back

Test findings:
I've had multiple blood tests which have ruled out autoimmune diseases (sjorgren's, lupus,  PMR, etc), infectious diseases (including Lyme), vitamin deficiencies such as B12, B6 etc.

EMG findings: Pinched nerve in lumbar spine, damaged leg muscle

Endocrine findings on blood tests: Vitamin D deficiency (level:20), chromium deficiency

MRI Findings
Brain MRI for possible MS: UBOs (history of migraines, 60 years old); neurologist concludes "although you can never rule out MS, your symptoms and MRI make it unlikely."

Cervical spine MRI: One area of mild spinal stenosis, mild spondylosis.

Lumbar spine MRI: Multi-level degenerative disc disease (4 herniated discs, 3 bulging discs, osteoarthritis, 2 areas of moderate spinal stenosis)

Bone scan findings: Severe osteoporosis in lumbar spine (T-score 3.8), osteoporosis in cervical spine (T-score 3.6), osteopenia in hip (T-score 2.5)

Visual tests normal, including visual field test

Ear tests normal although I've been accepted into the Rusk Institute vestibular balance program.

Like Johnny, I'm sure I've left stuff out but this in the gist of it -- I've got a vitamin deficiency and a very bad back in part due to long term calcium depletion (clearly my parathyroid was compensating for the lack of vitamin D by draining calcium from my bones)

[bisan]

Symptoms I have had with Vitamin D Deficiency,

Head:
Visual changes
Vertigo (eyes wiggle right to left quickly and  uncontrollable)
Ringing in the ears
Ears pain
Light flashing in both eyes at night
Brain fog inability to focus or concentrate.
loss of balance (such as a sinking floor feeling,like walking on pillow,rocking or swaying sensation)
Lock jaw,jaw pain
Dizziness
Headaches
Hypersensitive to sound
Light headed

Bladder:

Nausea
bladder & bowel problems

Emotional:

unrealisic fear
Anxiety attacks
Mood swings
Emotional roller coaster
Feeling of not getting enough oxygen

Muscle and bone:

Muscle spasms,trembling
Internal tremors
Buzzing sensation,vibrating start from my neck down to my legs this make my Insomnia even worse
Sever fatigue no energy
Muscular aches and pains
Deep bone pain
Muscle weakness particularly in legs and right arm
Back pain,sore muscles in back
chronic fatigue
Problems swallowing

Sleeping:
Too much sweating and hot flashes in the night
Insomnia

Other:
Sever PMS and Sever monthly cycle with bad headaches
Rapid heartbeat (above 120 beats per minute)
Heart palpitations
Unable to take any kind of medications or vitamins without the feeling of (dying sensation)Thank god this is over.

I feel better now,Most of my symptoms disappeared,Others are less severity.

[johnnymutt]

I never put together the ear pain and brain fog with the deficiency. I have noticed a really large drop in my cognitive abilities over the last year. At one point I could barely type, as I would think of one letter, and my fingers would type another one completely opposite. It's good to know that I'm not losing my mind after all, hehe.

[Phyllis2010]

Reading over these symptoms, you really see some common threads emerging in terms of the number of body systems affected by d deficiency.

[johnnymutt]

I cannot imagine the Millions of dollars being wasted with the misdiagnosis of so many people, including ourselves. I can see how the Dx could be overlooked because of all the symptoms, but it's my thought that perhaps a Vit. D test would probably be the cheapest test of all to have. It should be common day, to walk into a doc's office and have a vitamin test, before even saying hello. Sure a little money would be wasted on the blood work up of healthy people, but the cost savings on insane testing, and no lost work days should easily cover that cost.

You are right Phyllis, there is a clear pattern here.

[Phyllis2010]

You're absolutely right! It's a relatively cheap blood test -- vitamin D, B6, B12. I've had over $30,000 in tests including 3 MRIs and an EMG. Can you believe the healthcare system and how wasteful it is? Wouldn't it have been more cost effective to just run the blood test and treat your deficiency? Then, if you didn't respond to vitamin therapy, they could start looking for another underlying disease. Also, until I read other people's symptoms, I hadn't realized that vitamin D deficiency was such an MS mimic.

Even healthy people should probably track their vitamin levels just as they do their cholesterol levels.

[jimyblue579]

This is my first time posting on this site. I am a survivor of a Vitamin  D deficiency so bad. Today my prognosis is a pure vitamin D deficiency symptoms

[jimyblue579]

http://www.vitaminddeficiencysymptomsguide.com/

[krishana]

Hi everyone,
I was just wondering how long did it take for you to get the anxiety down? I seem to be having sever mood swings, especially towards anxiety.. I get random anxiety attacks and my Vitamin D level was 20, now it is around 30 but I still suffer from anxiety attacks.. However, I have noticed that the severity has reduced by 10-15% and have slightly more control over them.... So just wanted to know how long did it take for anxiety symptoms to resolve? My doctors are still not convinced that Vitamin D can cause such symptoms but after reading the posts here and doing some research online, it seems it is very possible.. This is my 3rd week of treatment..

Some info from the web:
http://drsorenson.blogspot.com/2009/01/does-vitamin-d-deficiency-relate-to.html
http://www.healthy.net/scr/article.aspx?Id=5815
http://www.easy-immune-health.com/Normal-Vitamin-D-level.html

[Phyllis2010]

Sorry it's taken so long to get back to you I've been busy and only sporadically visit this site. You're doing better than I am -- I started at 20 and I'm only up to 27. However, I've heard that vitamin D can definitely have a positive impact on mood disorders such as anxiety and depression. Hey, if after only 3 weeks your symptoms are reduced 10-15% it sounds as if you might get a lot better as your D levels rise.

[blossom88]

Wow, really glad (on my part) to see all your symptoms with this. I thought for sure I have been losing my mind for years. I've been tested for everything under the sun it seems, all but D until now. Last checked I was at 6. I go back in about 2 weeks to have it checked again and am hoping for at least a 7 :) So far after a few weeks of taking the D I feel no better, just worse... BUT keeping hope that it'll kick in soon and I'll start feeling a tad bit better.

[Phyllis2010]

Hey, Blossom, why don't you add your symptoms of d deficiency (as distinct from vitamin D intolerance) to our survey?

[blossom88]

My problems have been an ongoing issue for over 10yrs. I've been tested for RA, Lupus etc. so many times it's actually down right ridiculous anymore. My last Vit D was 6. Lowest my Dr has ever seen personally, he feels there is something else going on but isn't sure yet. I also have a very high inflammation level.

Vitamin D Deficiency symptoms

Visual changes
vertigo
ringing in ears
Foggy thinking (almost a confused feeling)
Balance has been semi to completely bad
dizziness sometimes to the point where I can't function
Migraines/daily headaches
sensitive to sound and light
Nausea (a lot!)
clenching teeth
Mood swings
Emotional
Anxiety
Problems swallowing to the point where I'd have to vomit to get things unstuck
Palpitations (pvc's with 122 bpm usually the highest)
Major muscle pain Calves, thighs, back mostly
Pins and needles all over
Hot poker type pains
Can not tolerate heat
Can't tolerate cold
sever fatigue
jumping muscles/spasms upper/lower legs and back
Night sweats
Muscle weakness
Dizzy/Vertigo feeling in the dark
Poor sleeping which has gotten worse

I'm sure more but so forgetful that I'm most likely missing some :)

Now if that isn't all bad enough... Taking the Vit D at 50,000 per week things are just 100x's worse. What I feel taking it is

Usually the day after I take it all I do is sleep or just lay around. And it's not a normal just laying around it's BAD. If the closest thing to me is the floor then I'll lay on the floor and just sleep. It's a very tired and terrible feeling. It's almost as if it's a drugged type feeling. I'm also having to pee a lot more often on the Vit D. I have almost no appetite at all. If my husband doesn't get after me to eat I won't for about 2 days.

I have taken it tonight so it should hit me in a few hours :) If it does and I will try and get on here to let everyone know what I'm feeling at the time.

[Phyllis2010]

Thanks for posting your symptoms and hang in there!! I also have migraines but not daily so I empathize with what you're going through. Read the adverse effects of vitamin D on the package insert it helps to distinguish intolerance from exacerbation of existing symptoms. Please keep in touch and let us all know how you're doing.

[blossom88]

Happy to say that this round of Vit D this week has been nothing like the others!!! THANK GOD!!! But, yesterday woke up with a new issue I had never had before. Hubby keeps asking if I hit my hand or something but I haven't. My hand at the pink/hand knuckle hurts soooo bad and my pinky, ring and middle finger keep bending, Almost like I'm gripping something with my hand. Ugh... But thankfully I am doing good with the Vit D this week.

[gadgetsmidnight]

Haven't been on a while.  Trying desperately to get some of the "joy" back in my life.  Wanted to list my symptoms, too.  They are in no particular order.  Just can't concentrate enough to make a good order.

Off balance feeling, like I am on a small boat
Blurred vision, occasionally
sensitive eyes
Think I see something out of the corner of my eye, but when I turn there is nothing unusual
ringing or low humming in my ears
tingling at the end of my nose and in my gums
Headaches, more frequent
Migraines, new onset
joint pain and morning stiffness
muscle pain
muscle twitching
unconscious movement of my toes (usually one at a time)
sensation of bus crawling on me, mainly lower body
extreme fatigue
difficulty concentrating
easy to get stressed in common situations
I just get cranky easier

I am sure there is more, but that is all I can think of.
One thing I have noticed is when I am tired, stressed, my blood sugar is really high (above 200) or somewhat low (below 100) or if I really have to urinate my symptoms are at its worse.  Is this something anyone else has noticed?

[Phyllis2010]

No, I have not noticed a change in blood sugar, though I sometimes think some of my symptoms are diabetes-like. I'm not a doctor but a blood sugar above 200 indicates diabetes(as do some of your symptoms); below 100 is normal depending upon how low (range - I think under 50 is hypoglycemia). It sounds as though your blood sugar is really fluctuating. Have you seen your PCP? An endocrinologist?

[gadgetsmidnight]

I do have diabetes (and am treated)..I just notice that when my blood sugars are high or somewhat low my other "vitamin D" symptoms worsen.

[Phyllis2010]

That's an interesting observation -- I wonder if there's a relationship between vitamin D and glucose tolerance? I've had insomnia the past 2 night and I'm experiencing positional vertigo today

[sleepy_casey]

I just received my test results today and found out that I am extremely deficient.  The nurse said that my level was "less than 4" and that the doctor had prescribed 50,000 IU daily (I don't remember if she said it was D2 or D3 -- I will need to check) for a month.  Needless to say, I have been scouring the internet, trying to find information.  Thank you for this post and this forum in general, it is very helpful.

I don't really know what of my issues are related to Vit D Deficiency, so I'll just lay them all out there.  Like many of you, I just went into the doctor knowing that something was wrong and it needed to be fixed.  The extreme tiredness had me especially worried.  I had many of these symptoms for years, but after my appendix ruptured earlier this year and I spent more than a week in the hospital, I have been far more observant about my health.  BTW, I'm a female in my early 30's.

Head:
Migraines and other headaches -- I have had these since I was 3
Seeing things out of the corner of my eye that are not there -- until someone else listed this, I had not thought to put this together.
High pitched noises -- I constantly think that I hear my cell phone ringing
Susceptible to cavities
TMJ
Grind teeth
Positional Vertigo -- not all of the time, just two different times (for long periods) which was diagnosed as an inner ear infection.

Legs and arms:
Odd stabs of pain in my shin bones
Achy pain in my shoulders/neck/upper arms that makes me feel warm and slightly itchy and also like a deep bone-deep ache
Cold hands and feet
Shaky hands -- I usually associated this with when I'm really hungry
My right arm will occasionally hurt so badly as I'm trying to fall asleep that it will keep my up for hours

General:
EXTREME fatigue -- I have told my husband that I'm "so tired that I *hurt*"  I will sleep 8-12 hours and still feel wiped out
Feeling down -- I feel like I'm often like Eeyore on Winnie the Pooh and I a very positive person
Mood swings -- especially with PMS, this is much worse than it used to be
Brain fog and trouble concentrating
Memory loss -- I have always been a good speller, but suddenly my brain and my fingers can't seem to remember how to type the correct combination of letters
Anxiety
Extreme sensitivity to cold -- and I live in a really cold state, so this is no fun.  I sit in my 66 degree house and need to have pants and socks and a sweatshirt on and sometimes the cold feels like I can feel it to my bones, especially in my shins.
Weight gain (around 15-20 lbs)
Feeling weak
Dizzy/lightheaded -- just sometimes, not all of the time
Random GI Issues

Sorry this is so long.  I'm really hopeful that the mega-dosage will work for me and that I can have more good days than bad in the months to come.

[Phyllis2010]

Casey, as you can see from this blog, many of us share some of your symptoms. To what extent vitamin D will help or whether many of your problems are due to other underlying condition(s) you'll have to sort out over time as your D levels rise. By way of encouragement, I have a friend who began treatment with a vitamin D level of 4 approximately 2 months ago -- I don't know where she is in her treatment but I know she was also being evaluated for celiac disease. I was at a doctor's yesterday who stressed the importance of taking D3, it's the most bioavailable form -- the prescription mega doses are usually D2 but they work well for some people I wasn't one of them. Best of luck wishing you good days only in the months to come...Phyllis

[9na]

These are my symptoms, starting with the ones appearing first:

- chest pain, a bit hard to breathe (about a year ago, getting worse this summer)
- tired/worn out all the time (fatigue)
- weakness in the limbs
- headaches
- mood swings, feel depressed from time to time
- dizziness
- frequent bowel movements (started late summer, comes and goes, really - good periods and really bad periods)
- joint pain
- musclepain in thighs, arms etc
- nausea  
- back- and neck-pain
- tender spots in head/scalp - different spots ache at different times
- throat-problems - often feels like a swelling on one side
- dry and painful eyes
- insomnia - for the first time in my life I sometimes just can't sleep at night.
- ears pain

I may have forgotten something, but this is what comes to mind.

For me, many of the symptoms seem to be strongly connected, and if my diarrhea is bad a couple of days, probably 'everything else' is also bad at the same time... Some days are far better, some far worse.

My bloodtest showed a D-level of 31 nmol/L, should be 75-150. I started about a month ago taking D3 (spray, actually). I started at about 3000 IUs a day, now I'm taking 5000.  Hoping it won't be too long before I se some improvement - I have two little kids and would really like to get to be the mom that I normally am instead of this zombie one... :/

[9na]

I'm just adding a few  that I forgot:

- tingling/numbness in hands and feet
- I tend to burp after eating or drinking
- dry skin in my face
- bone pain - i.e in the ribs

[Phyllis2010]

I started with a vitamin D level of 20; I'm now at 30.6 and my symptoms (described above) are much improved though it's difficult to know if the vitamin D is entirely responsible. Good luck -- the 5000 IUs a day should help and I hope you start feeling better as your levels rise!!!! Keep letting us know how you're doing...Phyllis

[9na]

It's so good to hear that you feel better! :)
Was your level 20 ng/ml or 20 nmol/L? In Norway we use nmol/L, but I see in here that in the US, it's mostly ng/ml. A bit of a difference - I think that my original level of 31 nmol/L would equal 12-13 ng/ml.

I think I can feel some improvement already, actually - but I'll give it some more time before I get mo hopes waaaay up ;) I'll have a retest in february, excited to see if my D-level is rising nice and fast ;)

I'll definitely remeber to keep you posted - I'm in here every day at the time. It's really a relief and comfort to 'meet' people who really can relate to my problems and understands it all :)

[David283727]

Hello all,
First post and thought I would share my experiences.
(Just been tested for Vit D and was at a level of 17)

Pressure in head and face
sinus problems?
fullness of ears
clicking jaw
'numb' feeling in temple areas
heavy headed
brain fog
memory problems
concentration/attention issues
a real strange sensation/pain in head if breaking suddenly in a car
convergence weakness (eye muscles)
scalp itching and flaking/red/tender on and off
extreme fatigue
a general feeling of being unable to balance - problems walking
anxieties (brought on by this health stuff in my opinion)
insomnia
sleep which does not combat tiredness
unable to sleep for more than 2/3 hours at a time
always thirsty
fluctuating appetite
fluctuating moods
intermitent swollen glands, mainly under arms. these become tender after consuming alcohol
a real intolerance to alcohol - hangovers from hell, last for days (have now stopped drinking altogether)
muscle weakness, whole body.
a general sense of feeling unwell.
muscle cramps
arms/hands shake after exertion
always feeling incredibly hot, even in winter
waking up with numb limbs. could be any, not one in particular
always thirsty
strange loud noises in head, lie waves crashing, happens about once a month - this tends to paralyse me for a short while and effects my vision.
excessive gas/bloating
pins and needles/tingling in different parts of body.
unbereable pain when doing a 'number 2' on the odd occasion - like a cramping of the inside of my rectum.
excessive sweat/clear discharge from rectum, brought on by being sexually aroused or running.
Rash in chest.
occassional abnormal LFT results, with 'no explaination as to why'.
disturbing dreams
sensitvity to light
problems with coordination.

The above is a list of symptoms that I have had over the past few years (I have only started to feel REALLY BAD ove rthe past 6 monjths or so - this was when all the balance/coordination and memory stuff started to really take effect)

Still not convinced that all of this can be down to Vit D levels?? I have been on anti-depressats for the last two months (reluctantly) but have not really noticed much difference. I started taking prescribed vit d tablets recently, and had teh injection this morning, and will be able to comment on whether this helps in teh next couple of weeks.

I have gone from being a sociable, fairly fit mid twenties male that is now a shadow of my former self. I have had blood wor done for just about everything you can think of and a CT head scan, with only the vit d levels coming back abnormal.

Should I accept that this is indeed the answer?!

Thanks for reading :)

[Seattleanne]

Migraine 
fatigue from mild - extreme 
blurred vision 
vertigo 
memory problems 
slow/ foggy thinking 
depression 
chest pains 
foot/ankle/leg/arm/shoulder/wrist/hand and finger pains in the muscle/joints and 
lower back and upper back pain 
excersise intollerance ( seemed to make me weaker rather than stronger and recover time got longer and longer) 
very susceptible to catching colds and flus 
night sweats 
mood swings 
dry skin 
sun sensitivity rashes 
change in allergies 
swellin in hands and legs 
weird heart beats 
I think that's most of them. I tested normal on ra but my joints had begun swelling as in ra
 Oh! I forgot two really disturbing symptoms.. 
Grinding my teeth Mostly when sleeping but once it was almost like lockjaw... Odd...and a combination 
of numbness tingling pain in my right upper thigh. 
I do get tingling in my hands and feet too.

[9na]

Hi, and welcome to the forum! :)

I recognise some of your symptoms, and I think many of them can be realted to the D-deficiency. (If you read everyone elses lists you'll see that there are some similarities, but also differences - it seems like everyone is bothered by their deficiency in their own personal way, somehow ;) )

And yes, I recognise your feeling of being a shadow of yourself! I'm 30 myself, mother of two, and It's been horrible! At times all I managed to do was get up, get them up, put myself in a chair and keep them safe... But better days will come, I'm sure - hang in there :)

Have you started taking supplements? Give it at least a month before you expect improvement - I've been taking D3 for about a month now, and I'm starting to believe that it's actually working ;)

I hope you feel better soon!

9na

[Phyllis2010]

9na, you're right my baseline level of 20 was 20 ng/mL which must be how the levels are measured in the States -- but chin up many people with levels of 13 have good results with supplements -- I have one friend who had a level of 4 another 9...David, I don't know what to tell you I'm kind of in your situation but not quite as I'm old (61) and have other findings however, my major metabolic finding is low vitamin D. The other metabolic finding is colloid nodules on my thyroid in the presence of normal labs -- I started taking protein supplementation and many of my hyperthyroid symptoms (weight loss, palpitations, heat intolerance, jitteriness) resolved or are resolving. I also have a very bad back (which might account for my walking, balance issues which have improved now that my compressed nerve appears to have healed somewhat) and UBOs (T2 weighted white matter hyperintensities) on a brain MRI (possibly consistent with a history of migraines). So, I don't know if the vitamin D supplementation will cure you but I don't think it can hurt and it certainly will help. Good luck, Phyllis

[Seattleanne]

My God, it's like reading my life for the past 15 years when I read these lists. Some of the symptoms I have forgotten about or never connected to the same condition...
It's appalling that so many people suffer for so long with something like this!!
I really wonder what to expect as a prognosis.
I never expected that the treatment would feel as bad as it does sometimes. I guess it makes sense as calcium returns to bones and body structure heals, but it *****.
I do notice some differences as I stay on d therapy... It feels like nerves are healing. The tingling is lessened and I am getting more sensitivity back in my fingertips I think. I'm starting to sleep better also. On days when I am active I still hurt a lot but I feel better after a nights sleep than I did before... Still I need to take it easy the next day it seems, and fatigue Or pain can still blindside me with no notice. But I've only been on d therapy for a little over a month.

[Phyllis2010]

I don't know if this helps or has the opposite effect but I've had initial adverse responses to treatment and adverse responses every time I up my vitamin D dose. Things like extreme back pain, etc...I'm also sleeping better than I have in years...I guess I won't know what's causing what until I get my D levels over 40...I've been on therapy now since May and just crested slightly over normal (30) in mid October. I'm scheduled for my next blood workup in about a week. Perhaps D deficiency causes horrible symptoms just the way B12 deficiency does though I still don't think it accounts for everything at least not in my case.

[Seattleanne]

Every bit of input helps! For instance, seeing everyones list of symptoms has helped me know I'm not crazy! So many years of feeling like I'm just broken for no reason that can be found left me feeling hopeless and depressed and attributing it all to being unlucky in the gene pool sweepstakes or worse.. Maybe deserving all this pain and decline because of something I did or didn't do.
Also, finding out how others are experiencing treatment let's me understand what to expect (generally). If I didn't know that treatment is also painful and slowwwwww I might have given up!!
So thanks to everyone!

[Phyllis2010]

Very slow (someone -- I believe Gadgetsmidget-- posted something 0n timelines) so hang in there...Phyllis

[David283727]

Hi there,

Thank you for teh reply and encouragement.

I am indeed taking supplements. Forgive me for not knowing doses or anything, I am just taking what was given without really looking into it. The packaging reads "Adcal-D3" PL 16508/0001. I am taking two daily and have been doing so for I guess 3 weeks or so.

I also had teh Ergocalciferol(sp) injection, 300,000 something or other the dose was I believe...

No benefits felt as yet!

I am well aware that anxiety is playing a huge part in my experience. To the point where it is now hard to figure out what the anxirty symptoms ae and what the vit d deficiency symptoms are, if that makes sense! I spent so long worrying about what could be wrong with me, that it has allowed some real nasty anxieties to creep up on me. This was most evidemt whilst I was waiting for my brain CT, the anxiousness caused me to almost become housebound, it's luck I have a great girlfriend who made didn't let me lose sight of the person that I am or I think I would have ended up literally driving myself mad with worry!.

Phyllis, thankyou for your words. I can also add palpitations and heat intolerence to my list of symptoms (so may that I have probably missed loads out!!). The heat thing is quite servere, I literally can not stand hot weater at all, and have not been on a typical 'summer holiday' for years because of it. My temperature is generally huigher than it should be (normally pushing 38), so I'm guessing this may have something to do with the fact I can not stand the heat.Who knows! My GO does not seem concerned about my temperature as it is not alarmingly high!
You mention that you have thyroid issues? I think that my thyroid function has always been normal when tested...

[Phyllis2010]

David, be patient and stick to it your D counts will go up. Also, remember that D3 is best metabolized when taken with a fat (so take it at meals or with a bit of cheese or nuts or something). Well, my thyroid labs are also normal when tested. However, because I had symptoms suggestive of hyperthyroidism or hyperparathyroidism, along with a strong family history of hyper and hypo, I booked an appointment with a thyroid/parathyroid specialist. Luckily he thought outside the box, and even though my labs would not justify an ultrasound to the insurance company, he performed the ultrasound for free. Sure enough, I was found to have multiple colloid nodules on my thyroid. He phoned me to say I needed to really focus on getting my vitamin D levels up and that I should see an endocrinologist and that he would monitor me on a yearly basis. So, I guess that vitamin D and the thyroid and these anxious symptoms (palpitations, heat intolerance etc) must be connected.

[Weakandfalling]

I have had most of your symptoms.  I know D deficiency can cause MS-like symptoms, but I really think you could still have MS rather than just D-deficiency.  There is an over-reliance on diagnostic tests and a reluctance of many doctors to listen to patient symptoms.  Some patients with MS never have signs on their MRIs or in their spinal fluid. Have you ever had evoked potentials done?  

I must tell you that based on my experience, it is my opinion that there is widespread suppression of neurologic diagnosing currently going on in our country.  It's not like cancer, where they make so much money from it they would never dream of delaying or suppressing cancer diagnosis.  Selling us all the many tests for a neuro inquiry, brings in much money.  Also, I believe our govt. is not eager to pay the disability often resulting from a neuro diagnosis.  So my opinion is that there is not a full, forthright effort being made to diagnose neurologic diseases in the U.S. today.  

Your symptoms speak of any number of conditions:  MS, ALS, Lyme, sarcoid etc.

Dr. Martz, who spent 30 years in internal medicine, was given a firm ALS diagnosis by an ALS expert, but on his deathbed, he decided to try antibiotics just in case it was really Lyme rather than ALS that was afflicting him.  That was a good move on his part:  The Lyme treatment cured him.  However, don't expect most MDs to be able to help you with Lyme.  Most are ignorant about it and there is, I have heard, currently suppression of Lyme recognition and treatment going on in this country.  MDs who treat patients for Lyme kind of need to "go underground" to avoid being ostracized by their peers and chastised by the AMA.  Lyme, for many in the medical field, virtually does not exist (just like the mafia doesn't exist).  If you did want to pursue Lyme it is crucial to find a Lyme specialist (not just an infectious disease MD -  heaven forbid!!)

I have experienced the frustration you have had in seeking a diagnosis.  Perhaps the answer lies in seeking medical answers outside our country.

WAF

[Weakandfalling]

One more thing:  You mentioned not being able to stand with your eyes closed - an experience that I also have had.  You called it Hoffman sign.  Actually, the proper term, I believe, is Romberg sign.  Look it up.

WAF

[9na]

Question for you all - has anyone else experienced increased intraocular pressure in one/both eyes with their deficiency? And/or very red and dry eye(s)? Just wondering ;)

[wkathryn43]

Thank you for posting your questions along with your idea to post our symptoms.  I agree, I think the symptoms of vitamin D is much more extensive.  Just reading these posts help me feel more at ease that my problems could all be from a vitamin D deficiency. For years, I have been having strange symptoms that every doctor has said was anxiety, even though I keep insisting that it feels like it is my body not my head.  I cannot tell you how drs tried to push me to accept an anxiety disorder.  I refused the anti anxiety medications and have been concentrating on my diet and eating super healthy.  Because of a recent heavy menstruation, my gyno became suspicious of an iron deficiency.  Turns out my iron is fine, my thyroid is normal, but my vitamin D was at 17.  I asked him about my issues lately and he said they could be linked.  These doctors have no clue.

Since I have had several serious auto accidents which has left me with an inner ear rupture and a disc that needed to be removed (I had a cervical fusion), I thought a lot of my symptoms were related to that.  Now, after reading all these posts, I don't know.  I have the ringing in my ears (sometimes so loud I cannot stand it), constant headaches, always achy muscles (arms, legs, feet, neck, shoulders, skull, forehead), dizzy at times, light headed, exercise intolerance (but keep trying), fatigue, feel drained, had heat senstitivity where I could not tolerate the sun hitting my skin even in the car, jaw pain, cannot tolerate a drink (and I love my red wine), and a constant feeling I do not feel good.  I think some of the different symptoms are related to women and hormones.  What I have not heard yet, though, is a heart rate that temporarily goes over 180 at rest.  Twice, my heart rate went so fast all of the sudden that we could not even feel a pulse.  It came and went quickly.  I felt like I was going to die.  In the hospital, they could not find anything wrong and labeled it anxiety.  Both times were in the summer.  All so bizarre...and to not have an answer is frustrating because I still worry I might end up having something seriously wrong that could have been cured if they caught it earlier.  Scary.

I hope we hear more answers and more research into the Vitamin D deficiency and that the public is notified.  Why suffer when it is so easy to fix!

[Grandlady]

Thank you! thank you!  Just found out about the vitamin D deficentcy that I have not sure the levels ect.  but Doc ordered 50,000 IUNs 2 times per week for 12 weeks.  

I have been on Paxil for about 5 and 1/2 years Suddenly it wasn't working anymore.  I couldn't concentrate and I was having to stop and ponder simple questions, like what to drink with supper.  Oh and talk about being exhausted that was me, no matter what I did I was tired.  I am on Trezadone to help me sleep but it was not working either.  I seemed to have a cold or the flu every other week and the pain in my body was debilitating.  The slightest bit of extertion would leave me unable to do anything for two to three days.  Things I enjoyed doing were to taxing and uninteresting.  Talk about grumpy, I wanted to rip peoples heads off.  The sound of running water drove me nuts.  Couldn't stand to have any really tight clothes on, and everything felt really tight.  Many more of the things you all have listed like; not being able to get enough air, the tipsey feeling, even the weight gain that one of you listed, and many others, has hit home as well.

I took my first dose on Wen. and today is Sat.  the difference is like night and day.  I'd say that I saw about a 30% change in me.  I look forward to feeling like myself in a few weeks.    I thought I was losing my mind but now I know that I wasn't and that has help a lot as well.  After reading the post on here I feel like I can breath again.  Thanks everybody for your imput.  It really helps.  

[Finlander657]

I've been diagnosed w/Vit D deficiency, my level is 4.  After reading all of the possible symptoms I certainly have many of them.  I am wondering, has anyone experienced a lot of nausea?  I have it when I first wake in the a.m. (NOT pregnant :) ) & periodically throughout the late afternoon.  Also, how long before any symptom relief kicks in after starting Vit. D.?
Thanks in advance for any input. :)
Cindy

[9na]

Hi, and welcome to the forum! :)

Yes, I've been having quite a lot of nausea. It fluctuates, as does many symptoms with VDD, but in bad spells I've been waking up nauseus, it calmed after a while, and then the nausea would come back as i went to bed.

I've been taking about 5000 IUs of D3 for 3 months now, and right now I'm having not-so-bad days, and I believe that it is improvement - but I'm not sure, and tomorrow I might feel horrible again... So I'm not sure if I can answer your timeline-question, but I do know that it takes several months for everyone, and also it is very individual...

4 is very low - what doses of D3 are you on?

We'll follow eachother on our way towards full recovery :)

[alifogg]

Hi there, yes I often get nausea in the morning too!

[Finlander657]

Thanks so much for the replies.  I'm so glad I found this forum!  
My dr has me on only 400 IU's of D3 per day!  After reading all of the posts & higher dosages prescribed for a lot of us that suffer from D deficiency, 400 IU's per day is probably not going to raise my D-level one iota.
I have an follow-up appt w/my dr next week & plan to ask him plenty of questions & hopefully he'll raise my dosage asap.  If he doesn't, I don't know what to do...I am so miserable with the symptoms that have been getting increasingly worse over time, and now with the nausea it's even worse.  I had an ultrasound of abdomen last week, everything A-ok w/that, and am awaiting results of some more blood work to figure out the nausea.  Suspect that it, too, is because of my D-deficiency but not sure.  
Hang in there, everyone.  Again, thanks so, so much for the replies.  

[Seattleanne]

Hi and welcome!
You are very very correct that 490iu will do nothing! At the very least you should take 5000iu a day. If you can tolerate it even 10,000iu / day is safe.... And take it for about 3-6 months! I highly suggest you go to a vitamin store or online and buy a supplement on your own...D3 (not d2) and in dry form... Plus a good multivitamin plus magnesium of at least 300mg to take daily. D needs magnesium to work properly!
Also check out : vitamin s council website and easy immune health website! Both are full of great and supportive info about d deficiency :)

[wanttodie]

My vitamin D level is 11 and I am taking 50,000 IU for about a month now. My major symptoms is that I feel I am on a boat and feel dizzy all the time. I feel very weak to the point I dont want to walk. I am constanly fighting this problem and I feel defeated now. I am having hard time to study (I am a 24 year old student). Whenever I focus on the computer screen I feel that I cant concentrate and see moving screen. Whenever I quickly see from screen to keyboard I feel even more dizzy. I have to sleep a lot in order to get through the day. Brain MRI is normal but my ENT thinks I might have an inner ear problem too lik eBPPV or labyrynthitis (hes not sure). I also have anemia (hemoglobin 10.8) and low blood pressure. I want to know if anyone else here feel like the way I am feeling especially with dizzyness on a boat? Cant focus on computer for long time etc? I really need help because now I am getting really behind in my studying due to this. I really want to die :-(

[gadgetsmidnight]

Hi there.  I have a question for you?  If you look at my symptom list above you will see that I listed an off balance feeling.  Like being on a boat that it is constantly moving side to side or front to back. (Like being tossed in rough seas)  I don't feel any spinning type of dizziness.  Which kind of dizziness do you experience?
If your ENT thinks it is BPPV they can check that.  There is a test where the blow warm air into your ear.  If you develop the spinning type of dizziness, then you have BPPV and there are exercises you can do to help lessen that type of dizziness.
When I was at the beginning of this journey I was just like you. Diagnosed Jan 2010. Couldn't focus, so tired I couldn't even walk across my house. (It took my two days to write my symptoms in this thread in a understandable order.)  Honestly when I got my numbers in the 30's I started feeling a lot better.  I still have the off balance feeling, but the other symptoms have improved greatly.  There is a thread somewhere in this forum that asks us who have been treated to write down where we are at in our recovery.  Hopefully that will give you some hope.

[wanttodie]

Thank you for replying me buddy......I have constant feeling that I am on a boat and weakness in my muscles. I have to take breaks when I am walking in a mall per se. I went to the ENT and he basically said it could be either BPPV or Labs based on history itself without any testing as you mentioned. I got my Vit D checked again and it is 50 now but I still have the feeling on boat......I also have iron deficiency anemia.
I dont know what else it could be now??? Does it take a while to get normal even if you vit D to almost a normal level?

[gadgetsmidnight]

Once you get your Vitamin D numbers up it still takes a long time for symptoms to resolve.  Out of all my symptoms the off balance feeling is still with me.  Go to
http://www.medhelp.org/posts/recovery-after-vitamin-D-deficiency/Updates/show/1488373
for a list of many people's updates including my own.  
Studies show it can take many months at being in levels that are normal before patient's symptoms disappear.  I have to sadly say that only symptom that has not improved is my off balance, but I have only been in the normal range since Feb 2011 and that was after taking supplements for over a year.

[Phyllis2010]

Gadgets, have you tried balance therapy? I had a course of it at the Rusk Institute and found it really helpful. At present, I'm not having gait problems or balance issues (inability to walk across atriums etc); however, I'm not sure whether this was related to D as much as to my back issues and, possibly, the T2 white matter hyperintensities (UBOs) on my brain MRI. Here's hoping my D levels are still rising from the 40s to the 50s...if not, I'm upping my dose.

[wanttodie]

Gadget I was wondering if you have any other problems besides vitamin D deficiency if you dont mind telling me or the ppl here.....I have searched that anemia can cause lightheadedness but I m not sure if the feeling of lightheded and off balance is same.........my feeling is that basically i have to hold on to things at times when i am walking....I CANNOT run......not because of pain or anything...but because of off balance.....in terms of other problem.....I only have off balance and muscle weakness.....I have to sleep often and onger if I am studying for a test.....
Also do you have hard time to focus from your computer screen to keyboard?? I feel that my screen moves every time I look from screen to keybord? I hope these are all due to vitamin D deficiency....and hopefully we all feel normal soon!!!!! AMEEN!

[gadgetsmidnight]

My other health issues are a Vitamin B12 def., Diabetes, and chronic stomach ulcer. (Been fighting  ulcers since 1996.)  Probably most of my vitamin deficiencies can be traced back to the chronic use of stomach meds.  (Many meds that reduce the acid buildup in the stomach can reduce absorption of vitamins.)
Lightheadedness can make you feel like you are off balance, but also can make you feel like you are going to faint.  Have the figured out why you are anemic?  It could be you don't eat well, heavy menstrual cycles, internal bleeding issue, or you just don't produce red blood cells correctly.  I know this is out of left field, but while you are anemic you should stay away from tea (hot or cold).  I work with people who have very high hemoglobins and they are instructed to drink tea to bring down those levels.  If you are a big tea drinker that could be part of your anemia.
Back to the off balance feeling.  It has been a part of my life for almost 2 years.(this May)  I actually walk with a cane. (It took me a long time to start using it.  Probably a pride issue, because I am not that old.)  The cane has helped me with the need to hold onto things.  I don't use it so much in the house anymore.  I don't know if it is because I feel safe here or if my symptoms are improving.  I am giving myself until October (studies show some VDD symptoms can take 8 months of good levels to start improving) then I will start doing some more investigation of the off balance factor.

[Phyllis2010]

I also walked with a cane for about 7 months. I used this beautiful cane that had been my Mother's it actually kind of made a fashion statement -- I figured if i had to use it I might as well embrace it sort of like wearing outlandish glasses frames. Of course, I am older, in my 60s, so it wasn't as difficult for me to walk around with a can. But, one thing I did notice was how many other people of all ages used them. Strangely, as my D levels rose or as my pinched nerve healed or I went into remission, I started using it less, first, giving it up in the house, then on short errands, now I don't use it at all. Here's hoping your balance keeps improving!!!

[wanttodie]

My anemia is because of poor diet and heavy stress of studying, not enough sleep etc.....I dont know what to do about this problem....if this thing does not get better then I announce it pubicly that I will end my life!!!!!

[wanttodie]

wait a minute....has any of our doc said that we are feeling this way is due to vitamin D deficiency? or even a possibility? how did we ever found out that off balance/dizzy is due to VDD?? Is there a study?? or just bunch of us came together and made our own epidemelogical study and just sitting around doing nothing about it......my doc said only one thing...VDD will cause bone pain and deformity....thats it!!!
Thank you everyone who is reading this and I hope we all feel healthy again.

[gadgetsmidnight]

Most doctors are under the old impression that VDD is just a bone issue. Your doctor is sad to say, wrong!  More and more studies have shown that VDD is more like a super hormone.  When it is low it can affect a lot of different areas of the body.  The problem is... that testing for and recognizing VDD has been on the back burner for so long.  Usual studies are made by drug companies.  They are not going to make billions on something that is readily available either by the sun or with an inexpensive med.
Google Vitamin D council.  They have a lot of the most up to date information on Vitamin D.  
Also read things on Dr. Holick. He has done a lot with Vitamin D.

I know at first my Doctor was completely unaware of the problems low Vitamin D can cause.  He has now started testing more people with similar problems as me and everyone of the has come up deficient.   Don't give up hope and certainly DONT give up your life for something that could be easily reversed.  It just takes time.
Also, work better on your diet.  That is something you can do.

[gadgetsmidnight]

Thanks for the comment on the cane.  I am hoping that I can get to the same place as  you. (sooner rather than later)

[fidesviva]

Wow - it's great to see all these other experiences!  I just found out yesterday that my vitD level is quite low - 21 (whatever the units were) compared to a reference range with low normal at 30.  So not nearly so low as some have reported.  I only found out about this because I have been having issues (I thought?) with my thyroid.  I was diagnosed as hypo thyroid about 2 years ago, started on thyroid hormone, got the dose adjusted okay, was good for about a year, then at a checkup, the doc found the thyroid levels low again and started upping the dose last summer.  

The last straw was the last dose increase (along with a change from brand to generic) that made me feel very bad - I felt like it was just too much.  To varying degrees, I haven't felt well since, and the symptoms ramped up again a week or so ago for no particular reason.  Last week I went to the doc for just feeling so terrible, they included a vitD test.  And maybe the low D they found is some of the cause for some of the symptoms I've been having, and it's not all thyroid as I have been thinking.  The doc lowered my thyroid dose a bit and also set me on 8 weeks of weekly vitD at 50,000iu (I think).   I'm hoping that much of my problems were to do with low D (as thyroid numbers weren't very much out of line). We'll see what happens.

Symptoms (vitDdef and/or too much thyroid meds?)
cold hands and feet
periodic pains at the tips of my right-hand fingers
elevated BP
mood: much too easily anxious and/or crabby
hard to concentrate or focus, brain-fogged, somewhat forgetful, more typos than usual
ringing ears
sense of fullness in upper throat and ears
thinking I'm hearing high-pitched things that aren't there
tired, even right out of bed
a sense of "vibrating" or tingling or something like that in my arms and legs
mild backache/muscle cramps at the side of the middle of my back from time to time
bottom of my feet want to cramp up when I go to bed sometimes

[Phyllis2010]

Once your D level get into the 30s and 40s I hope you'll feel a change for the better and, perhaps, be able to differentiate thyroid from vitamin D symptoms..Interestingly I had hyperthyroid symptoms and, even though my labs were normal, was found to have benign colloid nodules on my thyroid (a mini goiter)...I repeat this because my thyroid specialist said it was really important for me to work on getting my vitamin d levels in the normal range. He''s not a great communicator but maybe there's some relationship between low d and thyroid issues...Here's hoping the D works for you, Phyllis

[beebreeze]

I googled recovered from vitamin D deficiency and stumbled upon your thread. It was really interesting and inspiring. I do not know the equivanent of my test with yours but i got a 63nmol/L , they said it should be 75 or even 78, Even if i'm not as low as the others who are posting here, everyday has been a challenge!! I feel weak and tired everyday even after a week of vacation. I have been taking 2000 IU of D3 for 3 months now and I really don't know if there is a significant change or improvement. I still feel really weak. Should I increase my dosage? I am worried of over dosing since I am not way below the test. BTW this is my first post. I am glad that I found this forum!

[Seattleanne]

Up to 10k/day is safe and yes, up your dose to between 5-10k iu. Make sure it's d3 and not d2... Also take at least 300mg magnesium and 1k calcium. Good luck!

[beebreeze]

Thank you so much for the reply!, I'm going to buy those supplements today :) Have you recovered from you deficiency already?

[Seattleanne]

Yes and tentative yes :)
It's a long process: see the updates thread! After five months of taking 10k/day I finally feel better! The bone pain is completely gone...I still get mild stiffness but really quite minor in comparison to what it was. It was, as I'd been warned a long, often more painful than before process. Powering thru and not giving up on treatment is crucial!! Use this forum as support! It's full of wonderful intelligent ppl who understand what you are dealing with! I met 9na thru here and she is amazingly supportive and our emails kept me going (and maybe mine helped her too) drop a msg in profiles to ppl u connect well with :) so... The tentative yes is I'm still in a wait and see mode for other symptoms.. See if they are really gone. I think another month or two will tell.

[Phyllis2010]

Sorry, it's taken me so long to respond to your message -- I've had a cold, just a plain old cold, and got hit with work today. I support everything Seattleanne has said. Throughout my recovery I had to depend upon this forum for advice with dosing because, as noted, I felt worse prior to every increase in D levels and reduction in symptoms and I also had terrible problems tolerating megadoses of D3. On a cautionary note, I found that I had to titrate my D3 dose up gradually -- I'm currently taking 4400 IUs D3 gel caps divided into 3 x daily to maintain a steady state. I suggest, as Seattleanne advises, upping your dose to at least 4000-5000 IUs and possibly 10,000 if you can tolerate it. I'm also taking 1k calcium and 500 mg magnesioum. As a word of encouragement, I'm 80-85% improved (of course, I've other problems probably unrelated to but exacerbated by D deficiency that have also improved) but it took me 6-7 months and it was a roller coaster. Do not give up even if you feel worse you will get better you just have to stick with it. This is a great supportive Forum filled with intelligent people who know more than my doctors at a university medical center. Keep in touch and let us know how you're doing. BUY THOSE SUPPLEMENTS and keep taking them. BTW, as soon as my levels hit the 30s I felt much better my symptom improvement seems to correlate with my D levels rising -- I'm now in the 40s.

[beebreeze]

Thanks for your time, I am also more prone to sickness and colds than before, Its really bad how just 9 months ago I was playing basketball and lifting weights and now, I can't even drive my girlfriend to the airport.

Is there a conversion of the measurement used for vitamin D? Majority of the forum members are measured not in nmol/L, so I am not able to relate my readings with the others.

Interesting thing happened to me last week, I felt almost normal for around 2 days and just when I increased my dose and had good sun exposure, Its like I'm back 3 months ago with the weakness.

I'm really glad that you are almost there. Do you know anybody in the forum who is 100% recovered? Just a thought. I am really thankful for your time. I stopped telling these kinds of stories to some of my friends because I think they are tired of my complaining.

[Seattleanne]

Yeah, once the healing begins, it hurts and fatigue can really wipe you out... But it's part of healing. Not sure if I've seen any posts about 100%, which is why I suggested the update thread. I have a feeling that once people are all healed up and feeling better, most move on and try to forget this ever happened. It's pretty common to want to forget bad expreriences and vdd is pretty traumatic, given the battles ppl have for years with their doctors, many misdiagnoses, many more blind alleys, relationships deteriorating because no one without vdd gets how freaking hard it is to have, exhaustion and then a recovery period that often is emotionally and physically tough. Uh... Sorry. Got carried away... Point is, I think the 100% ppl are out rebuilding their lives... I promise I'll leave updates even when I get to 100% :):)

[Phyllis2010]

I hope to make it to 100% in terms of vitamin D recovery; however, I'll still have other problems which prolonged D deficiency contributed too -- back "issues," benign colloid thyroid nodules.

I'd like to comment on your energy surge observations. I experienced the same thing -- periods of feeling normal or better than normal, almost euphoric, then back down on the roller coaster. My theory is that the supplements (I was megadosing) took my D levels way up (intolerance symptoms) then on the way down they'd normalize and I'd feel good before crashing. It took me months to get to a steady state level within a sustained normal D range without bouncing. Every time I'd increase my dose I'd go up on the roller coaster then back down. Finally, I think I built up enough D in my body (and repaired enough damage) to level out. This is just my theory -- no studies have investigated this that I know of...You'll find the dose that's right for you -- I did with the help of this Forum.

[Seattleanne]

Oh Phyllis! I totally agree about the roller coaster aspect of healing from this! I took 10k/day fr the start and would experience the same thing...I think the first few months ( like 5 ) are the body reincorporating d into the whole body. My experience was that symptoms flared in different areas as they healed. It was pretty hard to take! One week more joint pain, one week shoulder arm pain, next foggy thinking and exhaustion... Etc and it just kept traveling around. I agree too that it once you build ip enough in your system AND heal enough it settles down. Are you sure your intolerance was not your body healing too fast for you to handle? Each healing ( nerves especially ) was really quite painful.. That is to say each improvement came after a period of what almost seemed like a step backward or a 'bad spell'.

[beebreeze]

I can relate to that. I made a personal joke before that every week seems that I had a pair of dice , each side was either head ache, muscle pain, dizzyness, sickness, or a side that has "tolerable day". hehe

[Phyllis2010]

I agree that each improvement came after a dramatic bad spell which was weird and somewhat frightening. However, I was really intolerant to the mega doses I was initially prescribed (D2 50000 IUs) -- had many of the AEs listed on the PIs....Once I settled into the right dose, thanks to the Forum, it was the roller coaster thing, yes, I believe it has to do with the body long deprived of D adjusting to it, healing and correcting imbalances. It will be interesting to see what my next blood test reveals...Interesting too is that if I take a bolus dose of D, like increasing it 1000-1500 IUs, I get kind of high, overly energized until I settle in to the dose increase.

[Seattleanne]

Beebreeze: lol so true! Sometimes you're rolling those dice a few times a day even!

Phyllis: I've heard others say they get that high if they take too much... I'm pretty stable at the max of 10k, but as we've ' discussed', I suffered in the other direction with a crash when lowering too fast. Guess it's the hormone aspect of d :)

[Seattleanne]

Oh! Something else... Youre taking d3 now right?? It might help with the goiter over time :)

[beebreeze]

Just came from the mall to replenish my vitamin D supply, felt like a candy store, I saw vitamin D in liquid form, Vitamin D from mushrooms, and one from wool oil, all of them D3 , I guess my question is which one would be better next time? (I got the wool oil version)

[Seattleanne]

Wool oil (lanolin) is most common d3 I think.
Let's start a new thread... Newly diagnosed(?)

[Phyllis2010]

Yes, I'm taking D3 in gel cap form 4000 IUs per day/4400 with my multivitamin. Yes, you and the thyroid specialist are on the same page in terms of the importance of raising D levels to possibly help with the mini goiter...FP

[beebreeze]

Just came home from the doctor for a 4th opinion. He saw that i was only a few numbers below the normal value. He recommended anti depressants and he said that vitamin D shouldn't affect my energy levels or other symptoms that I had. My other tests were normal anyway. He is a senior doctor btw. Maaan, hope hes wrong about that! Otherwise , I don't know what else is wrong with me. On the other hand, my sister who is a nurse in Virginia is convinced it is vitamin D.

[Phyllis2010]

It can't hurt to take vitamin D3 and it might help....All my physicians are affiliated with a major university medical center here in NYC, yet appear to know little about Vitamin D, though some are interested in learning more. The Neuro said the improved mood I've experienced with D might be attributable to the fact that whenever you resolve a vitamin deficiency people feel better and, therefore, their mood improves. In other words, he's not sure you can postulate a direct relationship between vitamin D and mood in the absence of data and stating the relationship is indirect. I think they need to do those studies and investigate the neurohormonal actions of vitamin D and also see if it has any impact on things like serotonin reuptake.

[Seattleanne]

Omg! It's soooo frustrating that doctors are so slow to acknowledge what is right in front of them! One visit to this forum would 'cure' their myopic views!
Depression in vdd ppl is, I believe, both symptomatic of AND in reaction to vdd. It's stating the obvious to say 'well people in pain and discomfort for long periods of time get depressed' duh!!!!!! But from what I've seen on here and experienced first hand, low d causes depression because it effects both ones hormone production and nervous system (includes the brain). Come on, medical community! Step it up!!!
Anyway, It's not at all clear that antidepression meds will help. In cases of severe depression, short term use might be ok, but long term might interfere with the healing process (?) do t know of course, but since the depression primarily  comes from the condition, and because o the condition secondarily, I am in favor of letting the body heal itself once it has the tools to do so (vitamin d3 is the tool). I think most everyone on here has tremendous courage and mental fortitude as most of us have dealt with a barrage of tests, misdirecting by doctors, long term pain, and misunderstanding from the medical community (often culminating in the dismissal of our condition as depression,for example) and we are still working, living our lives and kept searching for answers! Yay us!!! Docs that frickin don't listen has only added to the problems in most cases. I am thankful that at least we all found someone who tested for d finally...even if they remain ignorant (willfully so) about treatment and how big a struggle recovery itself can be.
Hang In there and check 'updates' for actual progress reports :)

[Phyllis2010]

Well said...I also hate that docs tend to dismiss vitamin d deficiency as the latest "fad." That kind of willful ignorance will keep the clinical research that needs to be done from being done. Yet, with conditions like macular degeneration, the NIH/NEI did the AREDS study to investigate whether a particular combination of vitamins would be beneficial -- it was. Guess who manufactured the vitamin product they tested -- Bausch and Lomb!!!...Until Big Pharma has a sell nothing will be done.

[smelison]

My vitamin d level was the worst case my rheum had seen at 6. It took a long time for docs to pick it up. I was SEVERELY ill for nearly a year before they did, but have had the symptoms for a few years.

I have kidney disease so I have lots of other things wrong with me, and it's hard to know what symptom is from what problem, but I these are the ones I know were because of vit d deficiency cos they're improving now I'm on treatment:

- Very, very severe pain all over my body. Pain to the touch like I'm bruised all over. Bone pain. Muscle pain. Joint pain. Constant pain which didn't respond to pain meds. Pain that put me in a wheelchair. Pain that made me housebound. Pain that made me give up my p/t job. Pain that meant my husband had to cut back his working hours to help me support our three year old son. Awful pain and loss of mobility like nothing else. Slowing improving on meds.

- Fatigue, completely wasted by late afternoon.

- Insomnia, I was getting very little sleep and the sleep I had was poor quality. I woke up feeling hungover every day. It took me about three hours to get up and dressed and ready to start the day. I couldn't function before midday. The first improvement I noticed on treatment was my improved sleep. It's so much better, and I hope it continues to improve.

- Probably mood swings and anxiety (and panic attacks), though I was so stressed out at feeling so awful and getting no answers from docs, so it could just have been that!

- Stiffness.

- I think I might have calcification. This is calcium deposits (in soft tissue in my case) causing restricted movement and pain. This hasn't improved since starting treatment. Having kidney disease puts me at high risk of this, but I think low vitamin d could put someone at risk as well, not that it's particular documented. But calcification can be caused by low magnesium levels, and magnesium and vit d are closely linked.

- Nausea and loss of appetite.

- Loss of libido.

- Possibly weakened immunity, I was so ill over the winter month with bugs, I had to go into hospital with one of them.

Will add any more I can think of once treatment has really started to work - I will know what symptoms are vit d related when they start to ease off!

Thank you to everyone on here for the helpful lists of symptoms.

[smelison]

Just wanted to respond to wkathryn43 to say your symptoms sound so similar to mine. I've had that feeling of anxiety in my body rather than my mind, and palpitations. Docs kept telling me I had anxiety and in the end I gave in and accepted meds. I took one and spent the next 24 hours vomitting. My body was obviously telling me I didn't need the meds!! Obviously I stopped.

I also had very heavy periods, and asked docs if this could be related to vit d. They didn't know. I had the coil fitted recently to control the periods so I'll never know if increased vitamin d levels will result in lighter periods.

All the other symptoms you mention are the same too.

[Phyllis2010]

I hope you'll keep us posted as your d deficiency symptoms improve and, yes, I hope you'll then be able to differentiate your D deficiency symptoms from those of your kidney disease. Hey, D therapy can't worsen your kidney disease and might make those symptoms better or at least more tolerable. It's interesting to track how your symptoms improve in relation to your D levels rising. I know I started feeling significantly better once my D levels hit 30. Feel better!!!!!

[roseenglish]

I am D deficient (level 21 LAB reports)

Its makes perfect sense because I got sick in 2001 sat at home, never went out, I live in the UK.
And then I got Malignant Melanoma so what bit of sun I did get I avoided like the plague, I remember the day I felt “ill” it was 6 months after my cancer diagnosis and I just felt run down, like I had a cold which wouldn’t go away.

Found out I was D deficient in 2009 after being in bed with viral type symptoms for 8 weeks and ending up with sever anxiety, phobias and depression.

I didn’t take D was too afraid as I had been fighting what I was convinced was systemic candida and unable to get rid of it. Each time I took anything (anti fungal) the die off put me in bed for weeks so I was worried that Vitamin D would boost my immune system and cause die off and I would be in bed for months again and I have my own business in the middle of a recession etc..

Long story short, for some reason and I don’t know why, the foods I used to eat that would make me sick (sugar) stopped making me ill...its like my symptoms of Candida vanished without treatment but what took their place was a very low immune system.

I would get a virus (a lot!) and it would last weeks, months... in bed one day OK the next, not too good the day after then back in bed...all over the place with virus symptoms like:

Aching legs and lower back (monkey bone) vague headache, weak and shaky, or sometimes I would get classic symptoms - sever headache, sore throat (rare) burning up and sweating, shivering.

I also had lots of dental infections and ear infections one time bursting my ear drum.

I can have 3 months of feeling almost OK...well enough to go out then I get a cold and it takes me months to get better.

I used to have sore joints and pain in my rib cage and arm and thumb! Thats how this is started...I was in bed for 8 weeks with Virual type symptoms AND the sore pain.
The pain has gone now. - I just keep getting sick all the time and this has been going on for 18 months on and off.

Its kinda like flu but I never get the sneezing or coughing or true cold and flu symptoms just the aching and weakness

I am worried I have ME (Chronic Fatigue) because there IS NO CURE for that crap and i need hope...years of my life have been lost to one illness or another (from 30 to 42)

I don’t have the very common symptoms of ME like sleepiness or brain fog and I can’t seem to see a pattern “ high activity one day - crashing the next day” I am either too ill to do anything or I am OK and this can go from day by day to week or months and no particular pattern that I can see.

My memory has been crap for years anyway...as has my ability to get words confused when I talk (My mums the same so I just put it down to age)

I started taking D3 at 400mgs for 2 months (Doctors dose) but have learnt that wont do anything so I am now on D3 7,500 a day with Magnesium, calcium, (have ordered Zinc and Boron and Vit K)

So far I seem to be tolerating it. No obvious sleepiness or chronic pain...the 400mgs  I was taking don’t count so technically I have been on therapeutic doses of D3 for 2 weeks.

My question is:

Can a terrible immune system actually be caused directly by D deficiency ?

I know it supports the immune system but I haven’t seen much evidence of people saying they get viral symptoms or sick for weeks or months with virus type symptoms that keep coming and going.

I literally do not know how I will feel one day from the next.

I work from home which is just as well as there is no way I could GO to a normal job.

Anyway, I WILL come back in 6 months and tell you if the 7,500 D3 I am taking has cured or even helped...

I just wanted to know if anyone HAS been cured or can relate to a very weak immune system like I seem to have?

[Seattleanne]

Hi Roseenglish!

I totally can relate! For years I caught every single bug that went around...and seemed to getvit worse than others and more often than not it 1. Lasted longer and 2. Turned into something only antibiotics would cure... Which of course meant yeast issues.
YEARS! Upwards of a decade. I started taking d3, magnesium, calcium and multi in November last year. 10k/day. I haven't had a single cold. No flu. I did get a uti but it cleared right up with cranberry pills! I no longer feel like I have no barrier between me and every germ on the planet. Yes. I do believe that low d destroys the immune system...especially if left low for a long time.

[Phyllis2010]

Just posted a study about vitamin D and the immune system...

[VitaminDiva]

Hi there. I just want to add my history to help those struggling. I am a success story! It has been a full year since the beginning of hell. If only I would have believed what low vitamin D' levels could do I would have had a much shorter healing time. I am a business women- was in a high stress job. Work in an office all day. Protect myself from sun when out. Been very healthly all my life. Eat good. Active. Social. Three wonderful boys. Very busy. Never took time out for myslef. Then all of a sudden hell broke loose.  Here is my history.

2008-2009 (Symptoms slowly creeping up)
Back pain- mid and lower
Increasing fatigue morning/afternoon
Needed caffeine or sweets in AM and PM
Felt irritable when hungry
Digestive problems
Diarrhea
Constipation
Pains in stomach
Disrupted sleep
Heavy periods
No sex drive
PMS
Bloating
Gas
Irritability
cramps
Fibroids
Hysteroscopy; D & C- removed polyps
Colonoscopy- clean


Jan 2010- July 2010 (still creeping up)
Extreme fatigue
Increased back pain- mid and lower
Increased PMS
Increased digestive issues
Increased irritability/shortness
Extremely tired when at rest
Increase anxiety- shake under pressure
Breast pain
Weight gain around middle
Craved carbs / caffeine and alcohol
Extremely heavy periods blood clots filling a pad every 5 minutes
Easily dehydrated- passed out
Dizziness when standing
Sleep disruptions

July 2010- Dec 2010 (beginning of hell)
Dizziness increased
Panic attacks – 1 month
Tremors all day- 4 months
Worse in morning
Chest pain
Loss of cognitive ability
Heart palpitations
increased pulse rate- 90's
Acne
Extreme insomnia
Increased fears- this was a big one
Headaches
Neck pain
Increased back pain
12 lb weight loss in 1 month
Hair loss
Sleep disturbances
Appetite suppressed/ nausea
Low blood pressure – 90’s
Blood pressure- 125 when laying down and 85 when standing
Worsening PMS- symptoms increased
Heavy periods with large blood clots- 7 days
Craved meat/cheese/ milk
Felt cold all the time
Certain foods made me shaky; sugar, carbs, fruit
Stress recovery av. 2 weeks

In July I was in the ER 4 times and repeatedly visiting the doctor to try to figure out what the heck was wrong with me. I even spent time in a heart hospital. ALL TESTS CAME BACK CLEAN!! They gave me antidepressants and told me to get therapy. The antidepressants made me worse. Obviously my body was rejecting them. Therapy made me feel broken- said I had an axiety and panic disorder. I even went to a chiroprator - he said my back was not aligned and my spine was bending. (hum.. was this a clue)

I knew that there was something else wrong! This was not me. How does something like this just happen!! So I took charge of my own life. Per my request- they took more blood tests and found my Vitamin D was at 30 in October. By then I was trying to exercise more, walking outside during lunch, out at soccer games, making a point to be active again... so if my Vitamin D was at 30 at the beginning of October I must have been really low before. Frustrated that something bigger didnt show up, I didnt think much of it because it felt like so much more then just a simple vitamin deficiency. I ordered nutritional supplements from www.womentowomen.com. in Dec (By the way a wonderful resorce for womens health!!) I began starting to feel better slowly. Midwest winter kept me inside. I thought nothing more of vitamin D. Here is what I was doing.

Oct 2010- Applied recovery strategies
Meditation
Light exercise
Deep breathing
Taking time out for self
Having fun as much as possible
multivitamin/magnesium and calcium / omega 3’s ( the supplements I was talking about)
Learned to manage stress
Changed stress causing behaviors
Changed stressful job
Minimized carbs and alcohol- eat healthy

Little by little each of the symptoms faded away.
Documented throughout the months that symptoms were most prevalent around ovulation, 2 weeks before period and towards end of period

April 1- hysteroscopy;  D & C to remove polyps (why do I keep getting polyps!)

May 2011- Only symptoms that remain:
feeling keyed up around ovulation and 1 week after period starts.
heavy periods (D & C was suppose to clear this up)
Lower back and deep right hip pain intensified around the same timeframe

At this time I went to a Endocrinologist and had a multitude of blood tests done. I felt MUCH better but something was still off. I was convinced it was my adrenals or hormones. All adrenal, hormone, ... tests came back fine but my vitamin D was now 22. REALLY!! I have spent the last 3 months outside planting, walking, watching my kids games... how could I be this low. So I started researching Vitamin D deficiency and learned that all of these symptoms are tied somehow. Vitamin D effects every part of the body someway- adrenals, hormones, nervous system, bones, heart.... He stated that the preferred level was between 50- 100 and doctors are now starting to test everyone for this because they are learning that it can cause/ prevent many health issues. The ideal levels used to be between 30-50 but research is starting to prove otherwise. Thank God!!!!

So he put me on 1 X 50,000 IU of D2 per week for 8 wks then wants me on 2,000 a day for the rest of my life. I am on week 4 and feel great! My period is normal!!!! My hip pain is starting to diminish. There are still days that it hurts or is tight but for the most part I can tell it is going away.  I have lots of energy!

The nutritional supplements that I still take has some vitamin D in it but not nearly enough. I have learned that there is a connection between vitamin D, magnesium and calcium. Constant prolonged stress can deplete magnesium. Its important to take all three so that they work together.

So the moral of my story is to find a really good cocktail of nutritional supplements (multi, magnesium + calcium, Omega 3, vitamin D), LISTEN TO YOUR BODY, take it slow if you need to. Your body tells you what it needs if you listen. Eat well, take time out for yourself and start enjoying life again!!! Good luck and take care my friends!!!!

[K83]

I've just been told that I have low vitamin D levels.

I presented to the Dr a few days ago with very bad stomach pains which have been progressively getting worse, plus a fever, headache and nausea. I'm feeling better since then but this is the 3rd time I've had these exact symptoms. Other problems for me:
Increasing muscle fatigue and poor recovery (I normally train 5 times a week but have had to cut back)
Tx spine pain - currently seeing a sports Dr
Poor memory, vague and poor concentration
Constipation/diarrhoea
Craving sweets in the afternoon (very unusual for me)
Tiredness and irritability
History of sever period pain (small amount of endometriosis removed last year)
Bad stomach pains (particularly in the afternoon)
Anemia

The Dr has given me vit D and calcium supplements as well as reflux medication (which I'm not taking because I know it's not reflux) I'm hoping the vitamin D helps, but I'm curious to know what's causing the deficiency as I get plenty of sunlight. Does anyone have any suggestions?
I suggested to the dr that it may be worth checking for candida or the bacteria levels in my gut, or that I might have a wheat intolerance - he wasn't convinced on any of my suggestions. I've just started taking the vit D so I'll see how that goes - but not sure it's going to help my stomach problems which is causing me the most discomfort and concern...
Suggestions??

[Phyllis2010]

I can't comment on whether D will help your stomach symptoms. However, the one thing about raising your D levels is that it can only help although it certainly can't cure everything. The reason the sun alone can't raise D is that 1) some people have problems absorbing D from sunlight, food, vitamins, etc and 2) you'd have to stay in the sun a very long time to get enough D to resolve a pronounced deficiency (in particular the older you get the harder it becomes to get enough D from the sun -- I'm in my sixties and would have to stay in direct sunlight for at least an hour and a half). To learn more about vitamin D, you should visit Dr Holick's website....Good luck with your recovery!!!

[Gary3243]

Thanks for your post.  Great to hear you are feeling better.  How much magnesium, calcium and omega 3 are you taking?

[VitaminDiva]

I take 300 mg of magnesium, 600 mg of Omega 3's, 500 mg of calcium from supplements. You could take more than this. These doses are in the mid range. I started eating very healthy to ensure that I get these vitamins from the food I ate too. Some people dont absorb supplements fully. Especially if the body's PH (acid level) is off balance. Food is the best way to get your nutrients but in the case of D deficiency food doesnt give you enough. I have also learned that D deficiency can also be caused by food we eat too. If there is too much acid in what we eat the body naturally expells it. Lining the stomach and intestines with a protective barrier to get rid of foods that are high in acid- also getting rid of the nutrients too. I bet most people on here have some sort of stomach problem... IBS??? Nausea??? weight gain/ weight loss??? I dont think that is a coincidence. I'm now starting to dive into this theory and will keep folks updated as I learn more. Bottom line- eat healthy, eat fresh, eat often, drink water, take your supplements, get some healthy sun exposure, find an active hobby. I cant tell you what a difference I feel now!!!

[Gary3243]

Thanks, thats about what Im taking.  I take 300mg chelated magnesium, 1000mg omega 3 and 350mg calcium(but drink two glasses of milk and eat yogurt everyday).  I do have stomach issues also (GERD), but am just trying to control that with my diet (docs want me on PPIs).

[Gary3243]

plus I take a RAW mens multi

[VitaminDiva]

Sounds like you are on the right track. How much D and for how long have you been taking these together? Watch the calcium intake via food though. As soon as we learn we are vitamin D deficient the first thing we do is head for the dairy. Thats where we always heard it was right? Too much can offset the PH balance. Dairy, especially cheese, is very acidic. Just make sure you're getting raw fruits and veggies in there to balance it out. If you dont like them now trust me, once you add them your body will crave them. Its kind of weird how that happened. Im sitting here right now with cucumbers in my water and a bag of carrots. Habit now. 1 year ago at this time it would have been a cup of coffee and a snickers bar for energy.

Think about how people lived and ate in the days of grandma and grandpa. There was always a balance of meat, potatoes, and veggies- not gobbs of one or the other. Most food was locally grown and fresh. We got outside more instead of being cooped up behind computers.

Good luck my friend!!!

[Gary3243]

Thanks, I was doing the 50,000iu of D weekly in feb and march, my level went from 15ng to 35 ng, then my doc had me on 1,000iu/day and my level went down to 29ng.  I was not taking mag or calcium.  I think I had some mag def becaue I satrted feeling worse mid march.  In mid May I started 5,000iu of D per day and started with the mag and calcium supplements, along with a multi (which has 800iu of D).  Im like you, a busy professional, who used to drink lots of coke and ate terribly (lots of late night fast food).  I now have at least one glass of V8 everyday, at least one apple, usually some oj, yogurt and a glass or two of milk, and eat lean meat when I can.  I have started to feel better at times and am looking forward to the day I have no more bad days.  I will be certain to supplement D and Mag the rest of my life.  Take care and God Bless

[mellomike]

Found out in May that my vitamin D levels were 23. At that time I started suffering from several symptoms which have kept me from working: muscle weakness, fatigue, poor stamina, dizziness, sensitivity to heat, no appetite, and low libido. I also have several food allergies and food sensitivities and these have gotten far worse since May. What I could tolerate before, like tomato and quinoa, I can't eat anymore, whenever I do, the muscle weakness and dizziness is much worse. Neither myself nor my doctor took the low vitamin D reading seriously. I was taking two drops of D3 a day sporadically (4,000IUs), but wasn't doing it faithfully every day. After reading this thread, and many others, I'm going to start taking four drops a day (8,000IUs) with magnesium. I thought my symptoms were related to a new product I started taking back in March from low testosterone, but after reading this thread and reading more about vitamin D deficiency, it sure looks like my symptoms stem more from D deficiency.

[mellomike]

Thought of a few more symptoms to add to my post above: constipation, poor memory and concentration, and sleep disturbances.

[Phyllis2010]

We've all been there and I empathize with you. Once your D levels get into the 30s and hit 40 you'll feel much better. (I'm having the problem of keeping them there). Definitely take a higher dose and the magnesium should help with absorption (a lot of us have trouble absorbing D). Don't take D3 sporadically but rather regularly preferably with meals as it is more bioavailable when taken with food, specifically a fat. Hang in there -- here's hoping you feel better soon!!!

[VitaminDiva]

I too had issues with food all of a sudden. Things that I loved made me feel aweful! Anything with sugar and white flour made me shaky. At the lowest point I didnt want to eat anything. I would gag when I put food in my mouth. I kept forcing myself to eat and tried hard to eat healthy and eat what my body was asking for. Sounds weird but it tells you what you are deficient in. Those are cravings.  Eventually that phase stopped.

Everything you mentioned I had at one point. Document your stages and check back in every couple of weeks. YOu may not know it at the time but once you notice a symptom or two dissapeared you will know you are healing. Keep up with the D every day and you will notice a world of difference in no time!  

[mellomike]

Thanks VitaminDiva and Phyllis for the encouragement. Sugar does the exact same thing to me also. I've reached a point where I'm paranoid of all foods, I have to check the food labels very close to ensure I can eat them. I've lost 13 pounds since early May. I have zero appetite but eat to keep up my strength.  Do you have food sensititivities, VitaminDiva? I'm wondering if my food sensitivities and food allergies are a result of low Vitamin D? Just a thought.

[VitaminDiva]

I had no food allegies but was tested for years before because I felt like I did. Of course all tests came back clean. I became obsessed with foods because I new that when I ate certain things I felt like crap! I lost a bunch of weight too but I knew I had to eat. I got accustomed to eating omlettes in the morning. Usually filled with veggies and bacon because my body craved salt (that has to do with your adrenals being exhausted-- yes tied to VDD). Eventually too much salt made my heart pound. So by then it was tIme to lay off the salt. That is actually a good sign because it means your body is adjusting correctly.

I look at my recovery in stages. At first I listened to my body and ate what it needed. If it wasnt telling me anything I ate as healthy as I could because those foods didnt affect me. I ate salads every day for lunch and a balanced meal for dinner. I also added a snack between meals to keep my blood sugar balanced- usually almonds or a nut mix. Always added a little protien. As I became healthier I could add more things in. At first I would test them and then I could add them fully. For example wine. I LOVED my wine. Had a glass every night. When this hit I couldn't tolerate it. Complete bummer! I can now!!! I also couldnt do much fruit. Particularly in the morning. Fruit has a lot of natural sugar. Kept adding it slowly. I can enjoy it all day now! The trick is to balance what you eat. Dont eat too much of one thing.

The thing with me though was that I didnt take my diagnosis of VDD seriously until a couple months ago. Not until a went to a endocrinologist did I learn more. My primary doc just said take a multivitamin and a 400IU D supplement. I wish I would have investigated more then!!! Since I have been on a high dose I feel amazing!! I can eat whatever I want. Including smores every night while on vacation a couple weeks ago. I still do limit (not restrict) my sugar and white flour intake though. I've been eating so good why go back.

Not eating is the worse thing you can do for your body right now. Food and nutrients should be your best friend. Take your D as directed, add a multivitamin and a magnesium/calcium supplement, balance your diet and you should be feeling good in no time!!!

[mellomike]

Thanks again for the encouragement and guidance. You may not have food allergies but it sure sounds like you have food sensitivities. I had a blood test done last year which identifies most foods and if I had any food sensitivity or allergy. Found out I had allergies to beef and milk and major sensitivities to wheat and wheat gluten. It was a huge blessing and I felt so much better until my Vitamin D levels got too low. I'm not too concerned about it now that I've identified the cause of my weakness and fatigue.

[Phyllis2010]

I've had to drastically limit my intake of sugar. I try not to eat anything regularly with more than 5gm of sugar and I upped my protein. I do not have diabetes but I do have nodules on my thyroid though my labs are normal. I was also plagued initially by intense thirst which has since diminished unless my D levels start dropping. I also take a vitamin supplement called glucose tolerance factor (chromium). Good luck with your recovery and be aware that for some of us -- like me-- high doses of vitamin D also cause symptoms.

[VitaminDiva]

I did have some sensitivities thats for sure. Good luck to you as well my friend! I have read that too much can cause symptoms too. It appears the key is to find what works best for you. I myself have scaled down to 5K a day now instead of 50K a week in one dose. I did fine but now that I am on week 7 I feel like I tolerate lower doses more often better than a mega dose. Hopefully my theory works. I'll go back for testing in a few weeks. For now it feels like its working. Phew! What a delicate balance our bodies require!!! God Bless!  

[mellomike]

You are so right about the side effects of taking high doses of Vitamin D. Monday I took 10,000IUs and felt awful (hard to explain, kind of a headache and numbness in the head). Tuesday went down to 8,000IUs by taking 4,000 with breakfast and 4,000 with dinner and felt much better. Yesterday (Wednesday) I took 4,000IUs with breakfast and 4,000IUs with lunch and felt bad again but not as bad as Monday. Looks like I need to space the doses out to 4,000IUs every 12 hours. I have noticed one improvement since taking Vitamin D: I sleep much better. Last night I got 9 hours of sleep!!!! I haven't slept that good in ages. :) The magnesium really help absorb the D, too. That was a great tip I learned from this thread.

[Phyllis2010]

Exactly, I learned the same lesson -- take your D3 in divided doses with food. Also, once you get used to a dosage level you can gradually increase it. Yes, vitamin D has greatly improved my sleep as well -- it's wonderful. Good luck with your recovery.

[mellomike]

I'm certain there's a correlation between vitamin d deficiency and food allergy/sensitivity. I've been taking D3 faithfully for a week now and I'm already sleeping better and I'm less sensitive to certain foods. I'm fully expecting my symptoms to improve each week. I've long suffered from bouts of fatigue, though not to the extent I am now, and now I know why. Vitamin D deficiency can cause all kinds of problems. In fact, I've encouraged my wife to get her D levels tested. She suffers from weakness, fatigue, brain fog, fibro, and depression. I'll be reporting on her results here soon. Got my D levels rechecked too.

[VitaminDiva]

Hey there. Sorry for the late response but I was on a mini vacation this weekend. Yes, thats right! I was having fun by the pool drinking frozen cocktails and munching on various 4th of July type foods. All with NO side effects! I'm not bragging but hopefully giving hope! LIke I said for the past year there was NO WAY I could do what I did this weekend. Thank heavens the old me is finally back... but calmer and less irratable :)

I am so happy to hear you are already noticing improvement. I have been telling everyone who cares to listen. My parents, my friends... all of them. Hopefully they benefit as well. I havent been able to sleep well since as long as I can remember. I sleep like a baby now. MY HIP and back pain is gone folks!! GONE!!! I have suffered from this for years!!! I couldnt even pull up my pants without being in horrible pain. The only thing I have lingering is feeling a little keyed up around ovulation (sorry for the girl talk :)) But if you read my very long list above you will see this is tremendous improvement.

MIke- You had your levels rechecked? What were they? I hear it takes some time but everyone is different. I'm going next week.

[Gary3243]

Great to hear of your success Diva!!  We are all anticipating that day.  I have just started to feel better after 4+ months of supplementing.  Im looking forward to getting back to my oldself.  Take care

[mellomike]

That's great to hear that you're doing so well. Your success story inspires us to keep taking our supplements, even if progress is slow in coming. It sounds like you've been taking D3 for a few months, is that correct? How low was your vitamin D level? Yes, I just had my D level rechecked. My wife had her B12 and D levels checked and thought I might as well have mine rechecked while we were at it. We're just waiting on the test results now. I wanted to make sure that what I have been taking is working and that some level of progress is being made.

[VitaminDiva]

Hell started in July 2010. All tests came back clean except for low Vitamin D in Oct 2010. It was 30. By then I was walking and meditating outside regularly so I always wonder what it might have been in July. Doctor told me to take a 400IU a day. I didnt think much of it and neither did they. Did not take the D. "I feel too bad for it to be a simple vitamin deficiency." Started taking the cocktail of vitamins in Dec 2010- multivitamin, omega 3, magnesium/ calcium. By the way- I strongly believe in high quality vitamins. Vitamins are not strongly regulated and you get what you pay for.

Anyway...My health increased slowly but surely but in May 2011 I decided to go to a endocrinologist because I couldnt get over the hump. I did not want to go back to my primary because she kept saying nothing was wrong with me. Sad, huh? That is when I learned my levels were now 22 and considered severely deficient. I was then schooled on the consequences and put on a 50K IU of D2 a week for 8 weeks. I took 6 weeks of that then switched to 5K D3 a day since. I am outside at least 30 min a day. It has been 8 weeks and the difference is monumental. I'll go back next week for tests.

So I did have a little bit of a head start when I started to take the cocktail of vitamins in Dec. That is why is is so important to supplement with more than just D. If I would have listened earlier I might have healed much faster. But now I know so much and am determined to help others. This ***** and if I can spread the word far and wide to whomever will listen to me I will. :)

I hope this inspires!!! I wish you all luck. Mike and Gary- Please keep us all updated as you progress. My prayers are with you!

[Phyllis2010]

What high quality brand of vitamin D3 having you been using?....I agree they are not strongly regulated and the contents highly variable because of this. I've been taking Jarrow, gel cap for best absorption. Thanks.

[mellomike]

Had my D levels rechecked last Friday. I've been taking Liqui-D3 drops by Rx Vitamins. My vitamin D level on May 11th was 23 (I had been using these drops sporadically since 1 May so my levels were probably even lower). Last Friday my level was 44!!! Wow, pretty impressive. For the past week I've been taking 8,000IUs (4 drops) per day and prior to that I had been taking 4,000IUs a day but only sporadically.  My question is: should I continue to take 8,000IUs per day or should I take less like perhaps 6,000IUs? I'd like to get my levels between 50 and 60 and I'd like to keep them there. I'm just wondering what would be a good maintenance dose.

[VitaminDiva]

I buy mine from Whole Foods. I like to buy organic. I also look for those that say 3rd party tested. If you dont have a whole foods close I would check into a vitamin store rather than pick up the 2 for 1 sale at the local grocer.  One way to know if your vitamin D3 is the real thing is if it says fish oil or soybean oil. D2 is derived from plants. D3 is derived from fish oil. You will notice that there are several D3's that say soybean. That proves to me that it isnt regulated so Im not going near it. Soybean is cheaper. Study after study says that D3 is better than D2. My mega dose was D2 and it was just fine. I'm on D3 fish oil now. I think its a matter of what your body absorbs better-- but Im not a doctor. :) Good luck! My thoughts are with you!

[VitaminDiva]

Oh my gosh!! That is great! Congrats! What did the doc say to do? How do you feel? I'm so excited for you!!!

[mellomike]

Don't feel much of a difference yet. The doc didn't tell me anything, it was just a nurse who called in my results. I've only been taking the D3 for 8 weeks now. I'm not expecting to feel much of a difference for another 4-8 weeks. We'll see. We're still waiting on my wife's results.

[mellomike]

This past week it felt like I regressed in how I was feeling. I was feeling even more fatigued and the dizziness and muscle aches were the past two days awful. I had some strange headaches and awoke this morning with muscle cramps. The muscle cramps clued me in that I wasn't taking enough magnesium (I was only taking 300mg's a day with my D3 drops). So I immediately took 600mg and within an hour the muscle cramping went away along with most of dizziness. I still had some muscle aches this afternoon so I decided to take 400mg of Natural Calm drink (magnesium citrate). I have to say that the muscle aches have almost gone completely away. I think there is more to the use of magnesium besides helping D3 absorb in your body. It seems like the use of D3 needs magnesium to work and if it can't find it normally it, will take it other ways causing all kinds of problems and symptoms. Any thoughts on this? Today's experiences sure seem to validate the importance of taking enough magnesium. It my readings it appears most of us don't take in enough magnesium which can also cause of issues on our road to healing using vitamin D3.

[Phyllis2010]

I agree that you need magnesium -- I went up to 500 and now I'm experiencing diarrhea so I'm going to adjust my dose downward...@VitaminDIva, thanks for your insights, I buy my D3 at Whole Foods but just noticed due to your feedback that it's in olive oil (however, I also take fish oil omegas); I guess I'm going to look for another preparation that's in fish oil for better absorption.

[VitaminDiva]

Ahh... youre listening to your body. :) I think Magnesium is going to be the next big topic in the healthcare community along with Vitamin D. Mag + D + Calcium are building blocks. They need eachother to do its magic. Along with all the others we see in a multi. We've always focused on getting more calcium but havent taken the other in consideration. Stress breaks down magnesium. If you are not getting enough D on top of breaking down magnesium your wacking yourself twice. With this your body starts looking for reserves and finds it within your bones. Once the bones are targeted your whole body suffers. Hence all the acks and pains we keep having. I think the key is to find YOUR balance.

Phyllis- I dont think Olive Oil is a bad thing. Right now I am taking Full Cirlce and it has fish oil and soybean. Fish oil is the primary ingredient. I have no issues with either plant or animal dirived D. It all depends on what your body absorbs better. I have read that fish lasts longer in the system (i've read 5 days in comparison to 10; sun lasts longer) but if you take it on a regular basis I dont see an issue. My thought is that if a vitamin is representing themselves as D3 and contains no fish then it most likely isnt regulated. That is my cue to look the other way.

I do have one burning question that I have on my research to do list: If Omega's are fish oil and D3 is fish oil then are we getting the same benefit from both? Are they one in the same? I cant imagine that a fish is like a side a beef with different cuts of oil. ;) Both vitamins are huge right now boasting oodles of healthcare benefits. Is it because it's the same darn thing... things that make you go hummm......

[Phyllis2010]

I think you've raised an interesting question on the Omegas and whether they're providing D. I did get up to the 40s with the Jarrow olive oil D formulation (then dropped down to 28)  so I'm going to stick with it for consistency and I've raised my dose. Also, there was a suggestion about Kirll Oil, another source of omegas. They've also found omegas probably play a role in preventing macular degeneration and improving eye health in general...Right now, I''m just trying to pull out of the slump I'm in and get my D levels back into the 40s or higher.....that's my goal, a very simple one.

[VitaminDiva]

Good luck my friend. I am interested in looking into the Krill thing. Small fish contain less mercury.

If you look at the list of benefits medical science is finding with Omega's and D it is very similar. Interesting...

Are you getting outside and gettting a little exercise?

[Phyllis2010]

Interested in hearing more about the Krill thing as I've also heard that small fish are less toxic and very often fish oil is based on anchovies and sardines...One of my problems is too much exercise -- I've destroyed my back -- but, yes, I'm getting outside and riding my bike whenever possible. Right now, I'm experiencing problems walking again either due to underlying problems/injury to my back or my vitamin D dosage and my levels rising. Typically once my D levels get into the high 30s-40s I feel great and many problems resolve -- it's just keeping my levels there. Thanks.

[mellomike]

I've been using Liqui-D3 drops by Rx Vitamins. This particular brand is made from sheep''s wool. I have to say this stuff is potent and got my levels from 23 to 44 in just six weeks. As I stated in my last post, it appears my worst symptoms--fatigue, muscle weakness, new food sensitivities, and dizziness--were a result of magnesium deficiency. It looks like I was fighting two different problems, Low D and Low magnesium. It also appears that taking the D3 drops was making the low magnesium problem even worse. I've significantly upped my magnesium intake and I feel amazingly better. I'm going back to work tomorrow. These low magnesium symptoms are the same as those who suffer from low D, so I didn't realize I was low in magnesium until my leg muscles started cramping up. Just passing this on in the hope it can help others.

[VitaminDiva]

Went and got my blood drawn today! Wish me luck! I feel great. Cant wait to see what it is.

Mike- totally agree with the mag thing. I think because they are both key building blocks to eachother when one is low the other suffers bringing both down. When I look back to my original symptoms I believe it was tied to mag deficiency. I was under extreme stress and stress breaksdown mag. When I had my D levels checked the first time it was only 30 then kept going down even after I was taking the multi. Ever since I have been taking the mag and D I have noticeably been feeling much better. I am now down to 2K IU a day and 600 mag. I feel great. Hopefully my blood says so too!

[mellomike]

Mag deficiency can be even worse since it's really the building block mineral used in so many bodily processes, over 300!!! Let us know your lab results. We are all waiting. BTW, my wife found out she has hypothyroidism, explains a lot. Her D level is 30 so she's now taking mag and D3.

[VitaminDiva]

Good morning! I got my test results back and my levels are now within the normal range at 58!! I am so happy!! Its been 10 weeks since I started on the D supplements. I also had my calcium checked too that that was normal. Yea!!!

I did a little experiment this weekend and didnt take my vitamins or D. Went camping so got plenty of sun. Within 3 days my hip pain returned. This tells me that I need to get D from more than just the sun.

I will now commit to stay on 2 K of D3 a day for the rest of my life in addition to my multivitamin, mag/calcium, and Omega 3's. Ill get retested in the winter to see if there is any change but for now I am ready to move on and continue to enjoy life. I learned so much about myself. I have decided that this year was the year of self discovery. I changed so much about myself for the better and truely feel like this little bump saved me from much bigger health concerns later on in life. Through our journey of life sometimes stubborn people like me need a slap in the face every now and again. :)

If I could leave you all with any words of encouragement I would say stick with it my friends. I did this. I am real live breathing person that survived a very trying year. Read my story above and you will see. I am a better person because of this and you will be too. Every day you get smarter and stronger. Listen to your body, find balance and continue to keep stepping into a new day. Find a doctor that will listen to you and dont be afraid to ask for what YOU want. Gone are the days of taking doctors orders.  If I would have listened I would have been on antidepressants and going to a shrink.

I cant wait to go back to my primary and tell them that someone who actually listened cured me with a simple vitamin. But the good thing is that I am educating her and educating anyone who will listen!!! The more we share our stories the more doctors will listen. They are great but my goodness there is so much complexity in a human body its no wonder we keep finding new things.

You know your body better than anyone else. YOU ARE THE DRIVER!!!

Thanks for being there to listen to me. I hope I was able to be a good listener and inspiration to you.

Take care my friends!!! Gook luck to you and dont give up!! God bless.

[VitaminDiva]

...one last comment.... I highly recommend www.womentowomen.com. WONDERFUL website!!! That is were I get my vitamin pack (multi, mag/cal and Omega's).  They have been a huge part in my recovery. They now have a "Bones Builder' vitamin pack with mag and 2K IU of D. Im going to give that a try. Several of my friends have tried them and are feeling a huge difference. NO I dont work for them :) just spreading the word.

[mellomike]

Congrats on your terrific progress!!!! You are an inspiration for all of us. Please check back often.

[Gary3243]

Just had my levels tested, they are at 48ng (started at 15 in February).  Been feeling better, but still having bad spells with weakness in hands/fingers, legs feet, dizziness weakness and sweating lots, some twitches shaking pins and needles in my fingers.  I can't wait for the day to come when these symptoms are gone forever.  I have just gotten my levels up in the normal range, so I plan on trying to get them to the 60-70 level then finding my proper maintenance level, then hopefully my symptoms will disappear.  I have had about every test know to man (MRIs, CAT scans, scopes, blood work etc) done with all of them being negative.  It has not yet been 6 months since I started supplementing, and I dont believe I started properly supplementing until just a few months ago.    

[mellomike]

I was just diagnosed as being hypothyroid and just started taking meds last Saturday. Your symptoms sound just like mine. I have found that hypothroidism and vitamin D deficiency often run hand in hand. My T4 free level was low normal (1.0), borderline, but I have a family history of hypthyroidism, had the classic symptoms, and the low body temperature. What were your thyroid levels? What tests did they do to rule out your thyroid? My vitamin D levels are now in the upper 40s/low 50s but have really felt no difference in energy levels, dizziness, and muscle weakness. Just something to think about.

[Gary3243]

Thanks MM.  My T3 was 32 (ref range 22.5-37), T4 was 8.7 (ref range 5.6-12.6) and my TSH was 1.18 (range .40 -4.5).  This was back in March.  My doctor did not say anything about it.  For hypo isnt the TSH high and the T4 low?  My levels seem to be fine.  I think my mom is hypo.  Thanks

[mellomike]

If you're still experiencing symptoms of hypothyroidism I would run new labs. You need to have the FREE T3 and FREE T4 checked not the TOTAL. Also have the Reverse T3 lab done. If hypothyroidism runs in the family I would definitely have new lab work done.  Yes, classic hypo does typically have high TSH and low T4/T3, but not always. Check out the website Stop The Thyroid Madness. It has symptoms and labs and other great info. Good luck!

[Gary3243]

Had my free levels tested.  They look good:  Free T4 1.4, range .8 to 1.8, Free T3 272 range 230-420, TSH 1.27 range .4 to 4.5.  How are you feeling??

[adw75]

Hi,

I am new here.

I am a 35 year old male. 17 months of rheumatic symptoms.  I have had ALL the blood tests over this time, especially this year (now the idea that a virus is behind it seems unlikely).  Everything normal except vit D - 43nmol/L = 17 ng/ml.  My rheumatologist has that my symptoms sound most like vit D deficiency.  She said it can take time to increase levels.  I haven't been retested. I have been supplementing inconsistently for 9 weeks and am a bit discouraged as she said that symptoms should decrease linearly with vit d level. I would have thought I would be well into the normal range by now.  I would be averaging about 2500 IU/day.

Symptons are:

Fatigue
Tendon and Muscle pain - left foot, arms, hands, shoulders, lower back, legs.

The only real change I have noted in the last 9 weeks is that the pain has decreased on my hands a little.  I can go into a fair bit bit more detail if it is of interest.

Adw75

[mellomike]

My Free T4 was 1.0 which is within range and my other labs were normal, too. But I still had all the symptoms of hypothyroidism. I have a big family history of the disease, and exhibited physical signs of it including low body temperature (my temps are always in the 96s or 97s). When my vitamin D levels got in the 40s and 50s and I still wasn't feeling much better the doc and I agreed to try thyroid meds. I'm on the lowest dose (25mcg). I've been on them now for a little over 3 weeks and I'm starting to really feel a big difference (more energy, better mental clarity, more muscle strength, digestion improving, etc). If you vitamin D levels have been in the 40s/50s now for a month now and you haven't noticed a difference in your symptoms you may want to investigate further your thyroid. Labs aren't always the indicator. Look at me as an example.  

[AlisaLara]

This is INcredibly like late stage Lyme disease.... <3

[AlisaLara]

Sorry should clarify I too had extremely low vit d and b12 and of course given all those "syndrome" diagnoses's like Chronic Fatigue/Fibromyalgia which in laymen's term means I'm exhausted & in pain but you have no idea why.... ANYwho after a looooong journey, it all turned out to be due to Lyme! Lyme depletes your body of everything and can attack you from the joints to the nervous system ect.... You'll know it's Lyme when Nothing else works!  

[Carla75]

Thanks so much for posting your symptoms.  I was recently diagnosed and have thought I was losing my mind.  I wondered how can I all of the sudden start feeling bad and have all of these symptoms.  I literally thought I was going crazy and knocking death's door.  The symptoms I have are a lot of what is listed by other posters, but I will list mine (what I can remember) in the hopes that it will make someone else feel better as the previous post have helped me to.

My symptoms are:

Palpitations (Holter Monitor test-no cardiac problems)
severe headaches
dizziness
nausea early in the day, lasting for a few hours (likened to morning sickness)
tingling in my hands and feet
chest pressure under the left side of my rib cage
shortness of breath, relieved after a few minutes
SEVERE fatigue
sore throat
Jaw pain
SEVERE neck pain
abdominal bloating
thirst
pain, all sites of back and pelvis (thought I had a kidney stone or cholecystitis)
hot flashes, with no fever
ear pain

I'm sure there are several that I'm forgetting, but seriously isn't this enough?  I think it's ridiculous that people are not tested for this routinely.  My level was 20.9 and I've been on 50,000 IU once a week for 12 weeks.  I am now 3 days away from my 6th dose and have just started to feel better.  I actually had 4 days last week where I felt like my old self and started feeling crummy again late yesterday.  I have been too tired to exercise or even go out of the house most of the time.  All of the previous posts give me hope that it will get better.  Can't wait for my blood draw in Novemenber to see what my levels are.  Also want to point out that the only other conditon I have is Hypertension, which was diagnosed 2 1/2 years ago and told it was a result of birth control pills.  I'm now being told that it could've actually been caused by VDD.  WHAT?!  I have been switched from blood pressure pill to blood pressure pill because of palpitations, headaches, or other issues.  Would it not have been simpler to just test me for VDD?  I have a new doctor and an awesome Nurse Practioner who, as an after thought, decided to test me for it.  Who knows how many years this could've gone on?!  

Good luck to all!

[Phyllis2010]

And, best to you for a speedy recovery!! I began at a level of 20 and I'm now at a level of 49. I do feel much improved, although some of my problems are not due to D deficiency. Once you achieve your goal, you'll want to consider taking D3 in gel cap form with a fat or at meal times. Good luck.

[gadgetsmidnight]

Welcome to the forum.  Feel free to ask questions and definitely look at past posts to get an idea of what to expect during this recovery phase.  (granted the timeline is different for everyone)

[Gary3243]

Interesting we have a lot of the same symptoms.  I had a HIDA scan done for gallbladder issues and my gastro has recommended that my gallbladder come out.  Have read that gallbladder issues can cause Vit D deficiency.  You may want to look into it.  Ive also had digestive issues, so hopefully getting my gallbladder out will take care of all my issues.

[Gary3243]

Had my gb baldder out two weeks ago.  Met with my surgeon yesterday.  It was diseased and abnormal (no stones).  Surgeon said a bad gb can defitniely lead to VDD def due to malabsoption of fat due to bad gb (Vit D being a fat soluable vit).  Something to think about, especially if you are having RUQ pain, which I was.  Bad gb can also affect your liver and pancreas, which helps process vit and minerals.  Been two weeks and starting to feel better.  Doc said it takes approx 8 weeks to get to the new you after having gb removed.

[Carla75]

Wow, Gary, sorry to hear about your Gallbladder, but glad it's out.  I know I have gallstones from a previous CT scan, but haven't had any issues with jaundice or feeling bad after eating.  I did have an experience with Palpitations the other night again and noticed my blood pressure was elevated, so i went to the ER, which I dread doing.  Honestly, who wants to sit and wait in a room when you're feeling like crap?  They did and EKG, Chest x-ray and drew some blood.  Turns out I have hypothyroidism.  I've had this tested within the past couple of years, but it looks like it finally caught up to me.  The ER doctor gave me a prescription for a low dose of Synthroid (because my hypothyroidism is not very severe).  I got into my doctors office the very next morning and she redid the prescription from 30 days to 60 and I will go back at that point to have labs drawn to check my TSH again.  I have a very good conversation with my Nurse Practioner, who encouraged me to continue taking 1000-2000 IU of Vitamin D3 a day and the synthroid.  Did I mention that I had my Vitmain D checked after finishing the prescription last Tuesday and my level went from 20.9 to 36.2???  YAY!  She said once I get my thryoid level where it needs to be, I will feel a lot better...memory and energy wise.  I can't wait!   This forum has been such a source of comfort for me.  

[Carla75]

Wow, Gary, sorry to hear about your Gallbladder, but glad it's out.  I know I have gallstones from a previous CT scan, but haven't had any issues with jaundice or feeling bad after eating.  I did have an experience with Palpitations the other night again and noticed my blood pressure was elevated, so i went to the ER, which I dread doing.  Honestly, who wants to sit and wait in a room when you're feeling like crap?  They did and EKG, Chest x-ray and drew some blood.  Turns out I have hypothyroidism.  I've had this tested within the past couple of years, but it looks like it finally caught up to me.  The ER doctor gave me a prescription for a low dose of Synthroid (because my hypothyroidism is not very severe).  I got into my doctors office the very next morning and she redid the prescription from 30 days to 60 and I will go back at that point to have labs drawn to check my TSH again.  I have a very good conversation with my Nurse Practioner, who encouraged me to continue taking 1000-2000 IU of Vitamin D3 a day and the synthroid.  Did I mention that I had my Vitmain D checked after finishing the prescription last Tuesday and my level went from 20.9 to 36.2???  YAY!  She said once I get my thryoid level where it needs to be, I will feel a lot better...memory and energy wise.  I can't wait!   This forum has been such a source of comfort for me.  

[Carla75]

Wow, Gary, sorry to hear about your Gallbladder, but glad it's out.  I know I have gallstones from a previous CT scan, but haven't had any issues with jaundice or feeling bad after eating.  I did have an experience with Palpitations the other night again and noticed my blood pressure was elevated, so i went to the ER, which I dread doing.  Honestly, who wants to sit and wait in a room when you're feeling like crap?  They did and EKG, Chest x-ray and drew some blood.  Turns out I have hypothyroidism.  I've had this tested within the past couple of years, but it looks like it finally caught up to me.  The ER doctor gave me a prescription for a low dose of Synthroid (because my hypothyroidism is not very severe).  I got into my doctors office the very next morning and she redid the prescription from 30 days to 60 and I will go back at that point to have labs drawn to check my TSH again.  I have a very good conversation with my Nurse Practioner, who encouraged me to continue taking 1000-2000 IU of Vitamin D3 a day and the synthroid.  Did I mention that I had my Vitmain D checked after finishing the prescription last Tuesday and my level went from 20.9 to 36.2???  YAY!  She said once I get my thryoid level where it needs to be, I will feel a lot better...memory and energy wise.  I can't wait!   This forum has been such a source of comfort for me.  

[Carla75]

Wow, Gary, sorry to hear about your Gallbladder, but glad it's out.  I know I have gallstones from a previous CT scan, but haven't had any issues with jaundice or feeling bad after eating.  I did have an experience with Palpitations the other night again and noticed my blood pressure was elevated, so i went to the ER, which I dread doing.  Honestly, who wants to sit and wait in a room when you're feeling like crap?  They did and EKG, Chest x-ray and drew some blood.  Turns out I have hypothyroidism.  I've had this tested within the past couple of years, but it looks like it finally caught up to me.  The ER doctor gave me a prescription for a low dose of Synthroid (because my hypothyroidism is not very severe).  I got into my doctors office the very next morning and she redid the prescription from 30 days to 60 and I will go back at that point to have labs drawn to check my TSH again.  I have a very good conversation with my Nurse Practioner, who encouraged me to continue taking 1000-2000 IU of Vitamin D3 a day and the synthroid.  Did I mention that I had my Vitmain D checked after finishing the prescription last Tuesday and my level went from 20.9 to 36.2???  YAY!  She said once I get my thryoid level where it needs to be, I will feel a lot better...memory and energy wise.  I can't wait!   This forum has been such a source of comfort for me.  

[Gary3243]

Thanks Carla.  My digestion seems to be doing better already.  Was told that it would take 8 weeks for the"new me".  Interesting with the hypothyroidism.  I had my levels checked.  They were all within normal ranges.  However someone said even if in low normal ranges could still be affecting.  My free T4 was 1.4, range .8 to 1.8 and free T3 was 272, range 230 to 420.  Were yours in the normal range?

[amywoodling]

I have bee recently diagnosed with VDD my level is 27.3. I go for a BMD test tomorrow to screen for osteopoprosis. i just turned 33 a few weeks ago. i think i may have a clacium deficiency as well because for the past couple of weeks i have been having muscle twitches all over even in my face. i have had this deficiency for many yrs but it was never diagnosed. i am sure my levels before were lower than what they are now because my upper back used to hurt so bad you couldnt touch me or it would hurt bad. i broke a rib coughing is what led to the suspicion to check me a few weeks ago. i have bee put on 50,000 iu of vit d3 once a week and now that the muscles started twitchig was told to take a womens vitamin once daily as well. i have had muscle/boe pain for yrs but actually wrote it off as possibly gettig arthritis or havig the fibromyalgia some people have. but turns out is is all due to a VDD. i have had ringing in my ears over the past few months and am now wondering if this is why. i have take 2 of my weekly 50,000 d3 dose ad so far the feeling of beig "ill" has left for the most part and the muscle pain in my right hip i have had for yrs went away yday. but my leg muscles, knees, feet and upper back throughout my ribs still hurt. i feel dizzy a lot too but i thik that is anxiety, i am a sufferer of that as well. a bad suffere, i dont hardly leave my house. but i have been taking valium and my dizziness disappears when i take one, so yes it is anxiety. i struggle to climb the stairs, which there are oly 8 of them, lol, it feels like a hike. i am fatigued. i generally felt like crap for yrs ad now with the thought i have a cure in the form of d3, and possibly calcium, i will know 2maro on that, i am in high spirits. i am glad i will eventually feel better after a while. but it has been nearly a decade since i know i have had this, so i am not sure if that is goig to slow the healig process or if it has damaged my bones. i have a broken rib now as i said but i dont know for sure if it was due to weak bones from this or just a coincidence that thankfully led to the discovery of it.

[Gary3243]

Welcome aboard the VDD train!  You WILL get better.  You may feel worse during recovery, but you will get better.  Come here for support.  We are here for you.

[kirstenl]

wow! I went to Dr 6 mos. ago with so many of the posted symptoms. I was worried it was thyroid since it runs in family & a lot of the problems are the same. I was basically blown off by being told nothing is wrong. It took me 5 months to get a second opinion.(being the typical female I figured it was all in my head.) Got results back & Vita. d low levels. I thought yeah, and what'll that do? Lucky for Me I found this forum & see I am not crazy. Thank you Thank you Thank you!!! I went & got my d3 but dr. said dose at 1000. After reading this seems like diddly squat.  Should I go for more? Also, did anyone have trouble with thinning hair?

[Gary3243]

I would go for more, 5k/day until your levels are above 40ng IMHO.  Read through the forum.  Good luck!

[VitaminDiva]

Hey there! It's been a while. I wanted to update you all on progress from posting my success story several months ago. I am not the same today. I decided right after I found out my levels were 58 to stop taking vitamin D. I thought I would get it from the sun- 30 minutes at least every day. Thats how nature intended! Well since then my levels plummitted from 58 to 36 is less then 3 months. My last check was in Sep. I am sure I am lower now. Many of my old symptoms are coming back. I came back to this forum and was amazed at reading my words back when I was feeling better. What the heck was I thinking! Now I have to start all over again and find that balance. This goes to show I need supplementation for the rest of my life! For some reason my body doesnt absorb it from the sun. I felt so super I thought I was ok to taper back. No can do! A word of caution my friends. Find what works and stay with it!!!

[Jceee]

I have followed your vitamin D Deficiency thread starting with your symptoms to your recovery. I too am a recent victim of this horrible deficiency, I was found to be tested at 17. I like many others went through test after test doctor after doctor to no avail. It wasn't until I spoke with a close friend about the possible link of Vitamin D def. to the symptoms I was suffering from; dizzyness, fatigue, anxiety just to name a few. I have had MRI's bloodwork and a pleathera of other tests done to find nothing except the deficiency of vitamin D. I am currently on 50,000 I.U. of D2 for 12 weeks, I am currently on dose 3 and feel about the same. I have done a lot of research and been to alot of forums but I really was happy I stumbled onto yor thread, because of your positvie nature and you were a "survivor". I am hoping, even though I don't know you, to get support from someone I truly admire who has been through this "hell". I am otherwise healthy don't drink or smoke within my weight range and exercised regularly before this. I want advice on how to get better and comfort to know that this is temporary. I apologize for reaching out through a message but I tried to leave a posting after your latest thread dated 12/7/11 but for some reason was not able to "reply". I have never been through something like this and am looking for any help I can find. My family and friends are supportive but have no idea what this deficiency is capable of.        

[Seattleanne]

Just bumping thread up to the top cause it's so important for ppl to read

[Carla75]

Hang in there Jceee!  It WILL get better.  It's crazy to think that life can be going along normal and something like this happens and your whole word is thrown out of whack.  I was diagnosed in August 2011 and put on the 50,000 IU for 12 weeks also.  I didn't really notice any improvement until 4-5 weeks in. Whatever you do, do not stop taking the vitamin D.  I would even recommend that when you finish the prescription that you start right away on a good Vitamin D3 supplement.  I take Vitacraves Gummies (2000IU a day).  It really needs to be D3 and NOT D2.  After my last pill, I was diagnosed as being Hypothyroid as well, which I had been tested for over and over again.  I'm told that it could be caused by my vitamin D Deficiency.  Not trying to scare you, just want you to be aware of the possibility.  I would ask them to test your TSH level when they draw your Vitamin D next time, just to be safe. Good luck!  You will be full of energy soon:)

[Gary3243]

Hi Carla.  What was your TSH level?  My last test was at 1.27, so they dont think its hypothyroid.  Tx

[sevans1993]

Hello.  I am a 41 yr old mom with 3 teenagers. My Vitamin D level at the present time is 7. Yesterday, I began my first dose at 50,000 IU once a week. I also have been going through hormone replacement therapy for over 2 years. For the fatigue and other symptoms like kidney infections, weight gain, edema, high blood pressure, and even some of the original body pains I contributed to menopause in the beginning. About a little over a year ago something (I thought was a virus) attacked my body. The fatigue and body pain intensified many notches for me. I was zapped of energy and just did not bounce back. It has been a decline in over all health from that point on. During that time, the Vitamin D test was not given. SInce I am the mother of 3 very active teens, active in the community, married, travel much, run a horse ranch this has been a shock to my system and to the health of our family life as we have known it. I have always thoroughly enjoyed the outdoors and have pretty much become a couch potato the last year- not by choice. The fatigue and pain I have felt in various parts of my body are responsible for that. I began noticing early on tingling and pain in my feet, legs. Sometimes stabbing pain which causes a noticable limp in my left leg. I thought maybe this was arthritic in nature do to an old horse injury and that is how it was treated by the local physician. I also have pain in my lower back, tail bone area down my left leg which flares up forcing me to rest. There is pain also in my jaw, left ear, neck and down my vertebrae. I feel like it seems to be nerve or bone pain not really muscular but I don't know. My hands will fall asleep while cooking or just normal things and stay that way for awhile.I have seen a GI doctor and Urologist for other complications experienced. Edema and high blood pressure have been other issues. My doctor has treated me for arthritic symptoms, bp, and edema. My weight gain has been disheartening. My diet is strict and good but my weight gain has been 30lbs and it doesn't seem to want to budge. Abnormal weight gain is not something that I have really struggled with before. ( I contributed some of this to menopause)  With the fatigue,menopause, and pain the weight gain is understandable but I am trying very hard to lose it. I am looking forward to my energy returning and exercising like I use to again. My white blood has been staying high as well even if an infection is not detected Anyone else? My thyroid tests are normal.  This is the first time my D levels were tested and this was done at my GYN. She called and put me on the Vit D 50,000 right after the test results came in. Seems kind of unbelievable that a deficiency is responsible but the more I read the more I believe.Since yesterday was my first dose, I don't feel so hot today and that is why I looked this site up. Perhaps, the Vit D is going through my body and starting the healing process. Many of you report what a slow process this can be. That's a bummer.  

For the gentleman that began this thread, I wanted to say how sorry I am for what you have been through. In 2006 our teenage son became very ill, with symptoms so much like yours. He had been to multiple specialists in and out of hospitals during that period of time. It was at first contributed to Rocky Mounted Spotted Fever which he tested borderline positive. That lead to cerebral illness and ultimately according to the doctors attacked his nervous system. They treated symptoms as they appeared and began leaning toward MS or Neuropathy because of the crippling impact it had on him and his slow response to healing. He had balance, vision,heart, and pulmonary issues also. Since he didn't heal as they anticipated on down the disease line and many specialists,many months, many doctors we went. The specialists he was seeing sent him to Mayo in Minnesota at the pediatric unit. We went back off an on for 2 years of treatment, group study, and re-checks. The 3rd year he went back 3 weeks of doc appointments and then 3 weeks of pain management w/other teens in a study group. Interestingly, part of the last visits there they tested the teens for Vit D deficiency. His was low (not acute) according to them but enough that they added Vit D to his other meds. It was 2000 iu/day not the 50,000 I am on now.  I thought many of you would find it interesting as well, that many of the adolescents tested low in Vit D- some acutely.These were  pediatric- adolescents (mostly over the age of 14) suffering acute pain/neuropathy/ autoimmune disease, etc. Today, my son is pain medicine free walking normal, breathing normal, and living a normal life again w/only bouts of neuropathy pain. He is also very health conscious eating healthy and working out regularly. I added his story only for the connection to the Vitamin D test and the MS/neuropathy symptoms and perhaps our teens should be checked more routinely whether they are already ill or just showing signs of fatigue if it can be a preventive.  

So what triggers the Vitamin D deficiency? Perhaps doctors are just seeing the connection between illness and the deficiency? I'll be honest when they tested the adolescent group with chronic pain for D deficiency over 3 years ago, I thought they were silly back then. I mean we had all been parents that had seen our kids put through the ringer (w/every test possible) if you know what I mean. I do believe that if they would have set us down and went over what the deficiency could cause parents would pay more attention! Think if some of those kids even mine would have been tested when the symptoms first began? It could have helped in the healing process sooner.

So I guess it is time for doctors to answer the question: Which comes first- The chronic pain/illness or the deficiency? Even with the testing done on the adolescent group, they contributed the deficiency to sick kids not eating healthy and not getting enough sunshine. It was never approached as the deficiency could have been responsible for some of their symptoms. A cure-all. I am still not so for sure a lack of hormone or imbalance or even virus did not contibute to a deficiency in me. Time will tell.              

[Moongrl]

I am so glad I found this forum! After about 12 years (maybe more) of being sick, tired and in pain and the doctors finding nothing wrong with me but only testing "routine" stuff until recently, I found I have a vitamin d deficiency. My level is 11.  Today, the doctor is supposed to call me to tell me what to take. She has also done two other tests that haven't come back yet. One for bacteria/yeast in the digestive tract and one for cortisol.

My symptoms:
Pain
Fatigue
weakness
Brain fog
Severe IBS with vomiting at times, about 1/3 of each month on average
with the ibs comes a "malaise" - general feeling of sick/toxic in every single part of my body
Joint pain (I have hypermobile joints and this has been blamed for my pain)
Tooth problems
migraines
dry eyes
extremely dry mouth
insomnia
depression and anxiety (only when sick!)
heat intolerance
PMDD
skin itching, a few times a month, like bugs crawling
weight gain
Recently- pressure in head and unsteadiness at times upon standing
GERD- been on PPIs for 15 or so years- I stopped them in January due to thinking maybe they were causing my symptoms- some things definitely resolved when I stopped those- 2" off my waist, no more bloating, 6 pounds lost without trying. However, I do have heartburn now. But on the PPIs, I was waking with acid in my mouth many times per month even though I hadn't eaten in hours and hours and raised bed and all that.  So this is actually better.

If I alter anything like get a new car, new pair of shoes, new chair, my body throbs with pain for days. I always thought this was my hypermobile joints getting out of whack and maybe it is but maybe the pain level is due to the vitamin D deficiency.
I wonder if the years of PPIs caused the insufficiency or of it is due to diet and lack of sun. I live in the north and read that for most of the year I will not get enough sun to get the vitamin d up here even if I try.

I'll post again when I hear from my doc. I am really praying that this is a good answer for me.

[NazikAbuzaid]

OMG I can't believe it guys, I  have exactly the same symptoms you are talking about and I have been yesterday diagnosed for vitamin D defecincy (value 4.7)  
For the last 3 years I have been taking so many drugs and the doctors ****** my life because of wrong diagnoses Omg

[NazikAbuzaid]

OMG I can't believe it guys, I  have exactly the same symptoms you are talking about and I have been yesterday diagnosed for vitamin D defecincy (value 4.7)  
For the last 3 years I have been taking so many drugs and the doctors ****** my life because of wrong diagnoses Omg

[NazikAbuzaid]

The only One thing I can add is fertility problems

[les22]

Glad to find this forum and see that all of my symptoms may be due to my deficiency.  My symptoms got really bad about 4-6 months ago, some I think may have been for years, but until recently I have just dealt with aches and pains and never thought anything of it.  Over the last few months I have deteriorated quickly and sought help, lots of blood tests, to find I had a vitamin D deficiency, my number was 19, so I can't imagine how bad some of you feel when your numbers are below 10, I felt like I was slowly falling apart at 33. I have only been on treatment 5000 per day for 4 days, so no change yet, but I am hoping I get some relief soon.  I also had ok level of iron, but low iron stores, so I am on a supplement for that also.

My dr said the last place she was a large portion of her patients were deficient, so that is something she always checks, lucky to have her so this did not keep going for years

My symptoms
headaches - use to get them rarely, now they are very frequent and sometimes not relieved by any medication
extreme lower back muscle pain - dread bending over for any reason or having to lift anything
nausea in the evenings
intermittent upper back muscle/shoulder pain and neck pain
severe joint pain in my elbows and ring fingers on both hands, picking things up wrong can give me sharp shooting pains in my hands and elbows
mild joint pain in my other fingers, wrists, ankles, knees, toes
bowel problems - on and off for years, severe lately
pain and aches in calf muscle almost continuously for months on end
periodic thigh muscle pain, sometimes dull sometimes severe
receding and tingly gums
tooth problems, for years I have been getting cavities and tooth pain I have never had before
eye pain, itchiness and dull ache almost constantly
extreme fatigue - I have had problems with this most of my adult life, falling asleep constantly in college, dozing off at the computer, fall asleep when I try to read, can't stay awake through a movie, I sleep 8 or more hours a night now and still need daytime naps, never feel refreshed
muscle weakness - whole body
bicep pain - comes and goes
memory fog/confusion - trouble remembering simple things I should know, constantly loose train of thought, hard time following conversations, always have to reread things or forget what I was doing, having a hard time spelling and remembering words, extremely forgetful - use to be able to remember everything
loss of appetite
loss of sex drive
weight loss
muscle twitches in legs
irritable
weakness in hands - hard time opening things
joints are always cracking and popping in my whole body, neck, back, shoulders, elbows, wrists, knees, hips, ankles
severely itchy scalp
occasional sharp stabbing pains in my diaphragm area
rapid breathing
feels like I have jello legs at times - feel like I am walking funny a lot
feel faint on standing frequently
get pins and needles in arms, legs, hands, feet frequently
have to lean against something when standing for long periods, feel like I can't hold myself up or have to sit all the time
waking up in night sweats periodically
feel cold all the time
horrible intolerance to heat or cold - feel like I am freezing until about 75 degrees, then I feel hot and uncomfortable, I am always either cold or hot, rarely comfortable
weight loss and problems gaining weight
have had low blood sugar lately

I have no idea if these will all improve with treatment or not, but I hope at least most will.  I will post once I start to see improvements

[Moongrl]

Les,
I feel like your list is my list. I too "just dealt with" the pain, fatigue, feeling like I couldn't stand for more than a minute at a time. Itchy scalp, (itchy skin in general for me but some nights my scalp itches so bad I scratch until it bleeds.) Night sweats, pins and needles. All of that.

Here is my question: Did the low blood sugar "lately" start with the vitamin D? Because suddenly I have a change in blood sugar feelings since starting the D. I always felt I had low blood sugar issues but this has a different quality to it. I hope to hear back from you and best of luck. I'm over here rooting for you.

[gadgetsmidnight]

Are you testing your blood sugars?  I know when my blood sugars are really high or really low I find my symptoms from the VDD to be worse.  I have been on this roller coaster for a long time. Diagnosed in Jan 2009.  Had terrible time getting my numbers up.  If my next test for VDD is in the 40's or above, I will have had my numbers up for a good 9 months

I have been doing well for the last 4 months.  Blood sugars are now low normal.  Other symptoms for the most have vanished.  I still get off balance and some fatigue.  Pain comes and goes, but not as intense as it was. (I do have fibromyalgia, too.)

[les22]

I started feeling shaky and checking my blood sugar a couple days before I got my results from the Dr about the Vit D and actually called her because I was worried it was running so low all the time, always in the 60s unless just after a meal(Sometimes not even going up much after a meal) and sometimes dipping into the upper 50s.  She said to switch to 5 meals a day and to make sure I am eating every 3 hrs at least and to keep an eye on it.  I did not start the Vit D until a day or two later, so it can't be from that.  I ran out of test strips yesterday and have not been able to pick more up yet, so I am not sure if the change in eating has done much yet to keep it up.  It never gets super low, so I am not so worried, but I know it is suppose to be above 70 or 80(according to where you get the info from) or you are considered hypoglycemic.  I have a feeling I have probably had that for a long time, I have always got the finger trembling and irritability from not eating if I have had to go to long without eating.  I just never checked it regularly until one of my blood tests showed a low glucose level a few weeks back when I first went to the dr and had my first round of blood drawn.

I said lately, because I know it has been lately, but never checked before just recently, so this could have started years ago for all I know, it never goes to dangerous levels apparently, so I mainly just get shaky.  I have always drank tons of coffee for about the last 15 yrs so I always thought the shakiness was too much caffeine, but now I think maybe it was being slightly hypoglycemic the whole time.

[megpng]

Hi all,
I am so glad I found this forum ... I'm feeling a little guilty as my symptoms are nowhere near as bad as so many of yours, and I appear to be reacting almost immediately to the D3.  But this just explains so much.  Over the past 3 years or so I have been feeling progressively more crappy - tired, listless, can't be bothered to get out of my own way, aches and pains, arthritis-type issues particularly in my fingers, put on quite a lot of weight without a obvious change in diet etc.  However, it has only been in the past three months that things have gotten pretty bad ... I have been so dizzy all the time, my right hand has been seizing up and really painful, my feet have have this kind of weird burn and inability to keep bending if I walk more than 100 metres or so and my mood has just been so low and flat - I really started to wonder if I was depressed and I'm one of the lucky people who have never had that problem ... anxiety and stress absolutely, but no depression.  I went to the doctor and she tested me for all different things, nothing showed up.  I went back and she retested for lots of other things.  The good news was that I didn't appear to have anything life threatening, the bad news was that she had no answers and I still felt like crap.  She had done lots of bloodwork as I have haemachromatosis (iron overload) and she said the only thing that showed was a deficiency in Vitamin D - I didn't ask her at the time about the readings as I didn't think there was much to it honestly.  Anyway, I suggested I get a little sun at which point she hit the roof - I had a melanoma a year ago lol - she prescribed the D3.  Now this kind of made a little sense to me as since the melanoma I had been being a bit cautious about being out in the sun ... so I went home and started taking the D3.  After about a week or so, I started to feel a little lightening in my mood over the next few days and just felt a little healthier generally.  At this point I didn't even think of the D3, as I had no idea of the symptoms of deficiency.  Then ... I forgot to take the tablet for 2 days ... and felt like crap!  It all came back, the low mood, my hand which I hadn't realised was feeling better started hurting again, my brain was all fuzzy again and I couldn't keep hold of a train of thought.  I came home and glanced at the tablets and thought oh yeah, I forgot ... then thought ... noooo, really????  I started taking two tablets instead of the original one.  I feel bloody terrific.  Obviously my levels could not have been that low and I guess the deficiency is only fairly recent, but the difference has been completely amazing.  I have been reading as much as I can on the subject and have been amazed at the percentages of people with the deficiency, even in countries like Australia where there is so much sunshine.  I am really hopeful that this lasts and will be going back to see my doctor to let her know and get my levels rechecked (and find out what the first one was).  But thank you everyone for your stories and information, it has really helped.  Meg

[Moongrl]

I don't think it is necessarily that your levels "weren't that low" but that you seem to be able to absorb the vitamin tablets more efficiently. How many IUs of D are you taking? Is it D3? I go to the doc tomorrow to find out if my deficiency is due to malabsorption. I hope not. But your story gives me hope anyway. I am glad you are doing so much better. It's important that we support each other and pass the word of our experiences on, so that others who are suffering can find it and get tested and hopefully get better. Thanks for sharing Meg!

[megpng]

I didn't actually think of the absorption issue ... although that makes a lot of sense. So many of the posts and different articles i've read refer to difficulties with absorption so yes, perhaps that's it.  I've been reading so much that i haven't really sorted it all through yet, but i do recall reading of links with haemachromatosis/ferritin and issues with absorption also ... although this doesn't appear to be effecting my ability, but i need to research a bit more on that.  And yes I am taking D3 - the doctor initially said 1 tablet of 1000iu, but after my 'crap' day,  I made an executive decision to up the dose to two tablets and that saw the symptoms basically disappear within a few days.  So, i will go back and talk to the doctor and see what she has to say.  I hope your issue isn't the malabsorption as you say ... it does seem to be a difficult one to solve. I recall when my youngest was little and very ill, he had to take so many different minerals and supplements as there was always one that decreased or increased his ability to absorb another - such a difficult thing to follow sometimes.  Thank you for your kind words and yes, i'm passing on the message.  

[les22]

if you do have absorption issues, did you get checked for celiac disease?  From what I have read it seems like D is one of the supplements that is sometimes hard to absorb if you have celiac.  A lot of people don't have the absorption issues once they are gluten free.  I also read it can cause hypoglycemia and a lot of the symptoms D causes also.  I may ask to get checked at my next visit, just to be sure.

[Moongrl]

Hi Les
I was tested for celiac antibodies, but they were negative. I just saw the doc yesterday and she says I have a bacterial and yeast overgrowth in the small bowel and I start on high doses of antibiotics and then anti fungals and then megadoses of probiotics plus L-Glutamine- the whole thing takes a month. I asked her for an other upper GI with a small bowel biopsy and she said that was fine but I should do this treatment first. If there is celiac, the damage won't be fixed in a month so it will still show up if it is there. I also have a B12 deficiency so I go on Friday to start my B12 shots. I also have to have a serum calcium level and PTH (Parathyroid hormone) level because people with vitamin D deficiency can have secondary HyperParathyroidism. I am so excited to finally have the results of all these tests. I see a dietician tomorrow. For all I know, she might put me on a gluten free diet. I better eat my chocolate chip cookies up today! ;) I'll report back after.

[trky8787]

I was also diagnosed with VDD 3 weeks ago. My level was 4. I am taking megadoses of vit D weekly and daily. My symptoms are exactly the same with les22 above. I was tested for my PTH and calcium and of course my PTH was high and my calcium level was low due to VDD. I am trying so hard as you, I feel a little bit more energic but still my pains are bad. I am glad that there are people like you, so I dont feel alone.

[Gary3243]

HI.  Hoiw did they determine that you had yeast and bacterial overgrowth in your small bowel?  I have been having digestive problems for some time and going in for a colonscopy tomorrow.  Had my gallbladder out a few months ago.  Have had all kinds of blood work done.  Just wondering how that condition is diagnosed and what medicines are your tkaing for it?  May suggest my doc look into that.  I do think I have candida overgrowth from strong regiment of antibiotics I was on last year.  Tx

[Moongrl]

I know one way is a hydrogen breath test in which you eat something and then they measure the amount of hydrogen that comes out of your mouth- a by product, I think, of the yeast/bacteria in the small intestine. But the way they diagnosed me might be even better because it gives more information.
She used this three day stool collection test: http://www.gdx.net/product/10006 and then you send it via fedex overnight and get the results back to your doc in about two weeks from when they receive it. If the doc has trouble interpreting the lab company will do a phone consult with him/her. Treatment (for me) is two weeks of Xifraxin antibiotic, then one week of Diflucan anti-yeast, then one week of megadoses of probiotics (to replace the good bacteria) along with L-Glutamine which apparently helps heal the digestive cells. It's important to note that I think this antibiotic only affects the digestive tract so it shouldn't throw you off anywhere else. But I really don't know. I start the antibiotics today. You feel worse before you feel better because all the bad things in there die off and have to get eliminated from your body. Then when you put the good ones back in, you are introducing billions of bacteria back in and you can feel bad while doing that for a couple days too. But I'm done feeling like I am going to die and not being able to do anything about it. I am taking my vitamin D every day, and slowslowslowly, my body/joint pain is getting better.
It occurs to me that if you are having a colonoscopy today, you are all emptied out of stool. You might want to wait two weeks or so to make sure you get some stool built up in there to actually test. Good luck!

[les22]

so, I have been on the Vit D and iron supplements for 2 weeks and I am happy to say the calf pain I have been experiencing nonstop for months is almost completely gone.  My lower back feels much better, still sore, but not as severe, same with my joints.  My upper back/shoulders seem worse, but I am wondering if since the more severe pains I was having have subsided, maybe it is just more noticible now.  Nothing else has really changed, but these were the most severe symptoms that led me to the dr in the first place, so I am happy I at least am getting some relief and hope for the rest to subside with time and supplementation.  I have read that a lot of people take months to get better, so I am glad I am showing some improvement so quickly, hopefully that means I am on the road to a full recovery.

[Moongrl]

That's great to hear!
My pain seemed to get a little worse before it got better, particularly in my upper body. It's so weird because I used to be so tense I felt like I needed a massage all the time and now my muscles feel a lot looser since being on the Vitamin D. I am glad you are feeling hopeful and seeing an improvement!  I am feeling even better since starting B12 shots and Bcomplex.

Take care!
Moon

[kellyangelface]

I have low vit d, level was 23. I have many of the same symptoms as you all. I have severe leg pain, cramps, feeling like can't get enough oxygen, anxiety, lack of sleep, foggy minded, heart racing at times, off balance, ear pain, you name it, thats just a few. I was wondering what did you guys take to get your levels up. My dic said no way vit d could cause all I have mentioned, evidently he isn't much of a Doc, I am seeing a new Doc soon. Please any help would be appricated! My email is kellyangelface@ hotmail.com  Thanks!

[Moongrl]

Kelly, I am on 5000IU of D3- in a capsule format. Many of those symptoms have gone away for me. I am still very tired and I do still have some joint pain but I think that is related to my B12 insufficiency.
Your doc sounds uneducated in these matters. Try to find an integrative medicine doc or sometimes Rheumatologists are better than GPs. Good luck and I hope things get better for you soon. I know how hard it is.

Moon

[DawnJS]

I too have a vitamin D deficency but a recent study done on patients with the autoimmune disease Hughes Syndrome shows everyone tested thus far has extremely low vitamin D you all should look it up all of your symptoms is exactly what i deal with and Hughes is a bllod testable disease. Go to Hughes Syndrome Foundation for info because its a newly discovered disease often mistaken for MS or Lupus so most websites dont have a wealth of knowlege on the disease yet. I hope this helps good luck everyone!

[les22]

Kelly, like Moongrl I am also on 5000 D3.  I feel great compared to before the supplements.  My muscle pain is almost completely gone, just some mild pain occasionally in my upper back.  Joint pain is almost gone, still bothers me occasionally.  My energy has increased dramatically.  Before I would have to nap at least once a day for a couple hours and never had the energy to do anything.  Now for about the last week I have not needed to sleep during the day, have been able to do some yard work, etc.  I still get worn out easy and am very tired by bedtime, but it is a great improvement from before.  I don't feel totally back to myself, but I am starting to feel normal again.  The rest of my symptoms are better also, I definitely think this was my main problem.  I would definitely check into another dr, EVERYTHING on my list above is better, not gone, but better and seems to keep improving.  The only things I have changed are the 5000 Vit D3 and an iron supplement and within about a month and a half I have seen so much improvement.

[lollipop43]

I have had a few episodes with hypoglycemia 5-10 years ago, but it became severe and frequent August of 2011. I would get anxious and lightheaded, heart palpitations, sweaty, and couldn't think straight. It was generally worse in the morning, and seemed to be the worst about 2 hours after eating. After I started checking my blood sugar levels, I was never lower than 75, but I guess you can still have reactive hypoglycemia, where your level is still considered "normal",but it's a big drop, say like 140, then drops to 80 quickly. My symptoms would disappear once I started to eat. My vitamin D level was 14 last August, then after the megadoses of vit D, in March 2012 it was up to 54. Eating more protein has helped as well as more frequent smaller meals. I was also super hungry, I gained about 20 pounds with all the eating.
Other symptoms:
extreme fatigue
anxiety
cracked fingernails (anyone else have this? I didn't see anyone list this)
upper back pain
seasonal allergies much worse
sinusitis
nausea
inflamed gums
irritable
inability to cope with mild stressors
poor concentration
very sensitive to sounds
I have been taking a maintenance dose of 5000 IU daily for 7 months now. I do feel much better, but I still get a little lightheaded and anxious sometimes, especially when I'm tired or stressed.And about a week out of every month, I'm just exhausted, and sleep 10 hours a night, as well as a 2 hour nap during the day (when I can!) My endocrinologist told me not to worry about magnesium supplements, but I'm going to start taking them based on eveyone else's advice here. It's so comforting to know it takes more than a couple months to heal from this....I thought something else must be wrong with me since my levels were measuring in the 50s. This forum has been so reassuring! Thanks to all your comments!

[Sheli74]

Hi, so happy to find a site that gives me hope towards my future! my problems all started about three months ago. i started omeperzole for heartburn at the end of June, by the middle of july started having jaw pain,blurred vision,joint pain,tingling and numbness in feet and hands. so my first thought was having a reaction to Omeperzole. which a lot of people do. i have been off for five weeks. since then i have been to the ms doctor and have had a mri with contrast which showed no lesions on brain. next week i im for an eye test to see if i have nerve damage. hopefully not ms. i have had tons of blood work done including b-12 and magnesium. all Came back good, except vitamin d. this showed i was 21. My symptoms now are muscle weakness, some spasms, back and neck pain, heat intolerance, off and on jaw pain, racing heartbeat,numbness in arms at night, burning on souls of feet especially at night and with shoes on, blurred vision, and overall just feel terrible. my question is could all this be from being vitam

[Carla75]

Hi Sheli!  Did they check your TSH or T3 Free and T4 Free? Just wondering because I was diagnosed with vitamin D Def and later found out I was hypothyroid as well.  A lot of the symptoms are the same for both.

[Namooni]

I started to cry when I read this groups posts. I have been very sick for 3 years. I was FINALLY diagnosed with VDD. Today I started 50,000 d2 weekly and magnesium oil daily. I have had every test under the sun only to be in the normal range and "maybe" I should see a shrink. I could literally cut and paste everyone's list as my own. Thank-you for being here! I do want to add one symptom that I haven't seen yet and that is lack of libido. I am a 38 yr old female in my sexual prime but I have no desire (sad).  Again Thanks so much!

[charlie1109]

Hi all, I'm new to this group!..  im 26..  after finding this forum and reading up on low vit d I noticed that my symptoms matched most of them listed!.. I was gping back and forth to the docs and getting told it was post viral.. anxiety ect.. after 3 months of being fobbed off by the docs i demanded a test for vit d it came back 45nmol/18ng!.. my doc told me I'm not deficent but insufficient and just to takd a multi-vit a day n ill be fine. they have no clue.. so after researching and looking on here I'm now taking 10,000iu of d3 a day, along with a multi-vit and 300mg of mag.. I'm only on day 6 sooo Looking forward to getting better!.. all these aches n pains are getting in the way of playtime with my 18month old. :(

Just one ques though.. i havent seen anyone mention this in there list of symptoms.. like something is under my right rib doesn't hurt just like there is something heavy there or tugging!.. hard to describe does anyone else have this??.. thanks in advance..

Charlie

[charlie1109]

Hi all, I'm new to this group!..  im 26..  after finding this forum and reading up on low vit d I noticed that my symptoms matched most of them listed!.. I was gping back and forth to the docs and getting told it was post viral.. anxiety ect.. after 3 months of being fobbed off by the docs i demanded a test for vit d it came back 45nmol/18ng!.. my doc told me I'm not deficent but insufficient and just to takd a multi-vit a day n ill be fine. they have no clue.. so after researching and looking on here I'm now taking 10,000iu of d3 a day, along with a multi-vit and 300mg of mag.. I'm only on day 6 sooo Looking forward to getting better!.. all these aches n pains are getting in the way of playtime with my 18month old. :(

Just one ques though.. i havent seen anyone mention this in there list of symptoms.. like something is under my right rib doesn't hurt just like there is something heavy there or tugging!.. hard to describe does anyone else have this??.. thanks in advance..

Charlie