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recovery after vitamin D deficiency User Group
Vitamin D deficiency symptoms
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Feel free to tell your story,Let's hear your experience.

Founded by bisan on February 15, 2010
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Avatar_m_tn
I would go for more, 5k/day until your levels are above 40ng IMHO.  Read through the forum.  Good luck!
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1710899_tn?1309351233
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!!!
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1942513_tn?1324153377
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.        
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Avatar_f_tn
Just bumping thread up to the top cause it's so important for ppl to read
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1797743_tn?1389217285
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:)
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Avatar_m_tn
Hi Carla.  What was your TSH level?  My last test was at 1.27, so they dont think its hypothyroid.  Tx
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2066178_tn?1331133297
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.              
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Avatar_f_tn
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.


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Avatar_f_tn
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
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Avatar_f_tn
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
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Avatar_f_tn
The only One thing I can add is fertility problems
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Avatar_f_tn
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
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Avatar_f_tn
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.
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1156694_tn?1265213626
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.)
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Avatar_f_tn
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.
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Avatar_f_tn
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
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Avatar_f_tn
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!
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Avatar_f_tn
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.  
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Avatar_f_tn
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.
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Avatar_f_tn
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.
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Avatar_m_tn
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.
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Avatar_m_tn
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
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Avatar_f_tn
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!
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Avatar_f_tn
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.
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Avatar_f_tn
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
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Avatar_f_tn
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!
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Avatar_f_tn
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
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Avatar_f_tn
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!
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Avatar_f_tn
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.
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Avatar_f_tn
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!
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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
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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.
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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!
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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
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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
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Hi everyone!  I am hoping that I can help anyone that may be in my situation.

I started getting really tired and having heart palpitations about a month ago.  At that time it seemed as though I had heart problems.  I didnt have the strength to walk up the street and if I tried, my heart would start beating fast and Id have palpitations.  It got so bad that I could not really wall anywhere, even just to get groceries, for example.  I learned that my heart is fine after getting a cardio exam and stress test.  

I visited an internist and found out my vitamin D level was 16and she said that could be the cause.  I hit bottom about a week ago although I had been taking 2-3k d3 daily for a week or two.  Then, i started taking D2 50,000 IU and have made a lot of improvement in the last week.

These were really my only symptoms, though.  Some anxiety but I feel like the extreme fatigue and weakness really are the cause of that.  I felt like I was going to die, basically. Also, i am in my early thirties, 200lbs and pretty good health.  No other bad results on my blood work and no other symptoms, really.

Hope this helps to compare notes!  
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I can't find my post from earlier today. Can someone help?  It's about Vitamin deficiency.  Thanks

Gin
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Hey everyone! Not to many posting in this group much. But last week I went to the docs and my level was at 15.

My symptoms all started arounf my period!    

Heart flutters
Nausea ( morning is the worst)
No appitate ( hard for me to eat)
Very tired
Pins and Needles ( on and off through out the day)
Headaches


I seem to feel better towards the end of the night for some reason.

Iv only been on the suppliment d3 2000ui since tuesday. and Im thinking thats not enough. I go thursday to see her again. Maybe she will give my a higher dose. ?!    I know it takes away to get better but I really feel like crap. Iv never felt like this in my life!
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Hi everyone,
just wanted to share my symptoms as well, to understand better if all of this is originally due to VDD (my level was 14 ng) and may be help to some of you to understand better what is going on. Before this issues I was very healthy person, careful with my nutrition and doing sports:

Emotional and cognitive:
-severe insomnia,
-anxiety and fear
- bad memory and concentration
- feeling out of it all

Heart
-pains and palpitaions
- hot sweat in the night


Arms and legs:
- strange red sores on the skin
- shacky+ internal tremor

Head:
- had an impression of a very high pression, always red cheeks and nose, and the skin on the face was constantly red and irritated at the point that it hurted me to touch to my face!
- Burning nerves on the face and the neck
- loosy muscles on the face (I realised it when I saw myself in a mirror, while I was bowed forward), looked like I was 90, although I am only 27.
- feeling too hot all the time


Bowel issues

Neck:
tight muscles, an impression that there was something stuck in the throat,
strange sensation in the thyroid zone;

Bones:
- Back pain
-other bones pain
MRI of the back showed
- arthritis in the lowerback (it was strange because only 6months earlier, there was no such a problem on the x-rays)
- denenerative processes all the long of the spine
Densitometer showed that I had only 60 per cent of the normal bone density on the arm bone -> ostheoporosis (I am 27!)


I was to see amounts of doctors, they rechecked my thyroid 2 times and everything was ok, they said it was psychological issues. Then they discovered I was VDD, but didnt want to accept all these issues could be linked to Vit D. And even if I had only 14 ng, they didnt want to give me a treatement for this at first, saying it can be toxic and there is no reason that it is not MY normal Vit D level; Eventually I found an endocrino who gave me a treatment.

After 8  weeks of 50 000 IU weekly I started to feel better, insomnia has gone, skin sores have gone in first weeks, and my face started to be less red, the skin irritated; After my Vit D was at level of 55ng, I started a lower dose (1000 IU a day), and very quickly, in only 1 month without treatment, started to feel bad again. Rechecked my level, it was 21 ng!!! At the same time they found that this time I had Thyroid issues, Hachimoto, but the thyroid is still able to produce the right amount of hormones, apprently...
Now I am at the end of my second VitD cure, my level is back to around 55ng, and I feel okay,but now feel my thyroid being unhappy, and my cheeks are slightly red and loosy, and my skin looks much older than before.. and my endocrino says it cant be due to VDD
euh. I am still very emotional, but now I think it s due to the fact that I am done with having been not healthy for all this time.

Good Luck to all of you.





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My skin has done the same thing. I am 39 and have always looked way younger than my peers. I always got carded at bars. After this last year and a half of bringing my d levels back up my skin just looks terrible (aka old) and I now have lots of white hairs. I started doing bi-weekly home spa treatments I've found on pinterest to help each problem. It's working just slowly.
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After a year and a half I am still battling this and have a hard time keeping my levels up. I will feel like I'm doing great then the motion sickness starts and thing spiral back to were I was before. I now know it's my d levels again and boost my daily's back up. I am having to stay at 6000 units of d3  a day and using magnesium oil foot baths 3 times a week. (I can't take internal mag. it runs right through me)

*I wanted to add to the symptoms list of inflammation everywhere in my body. There isn''t a place on me that isn't swollen and inflamed. I even developed a lot of allergies to stuff that I was never allergic to before.
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So I have recently been diagnosed with Vitamin d deficiency of 15. I have been light headed for 3 yrs and have been to every doctor in town. My wife is ready to throw me out the window but I don’t blame her. They all think I have anxiety and I just started taking a pill for that which does not make me happy and all it does is make me sleepy. I will start taking liquid D3 on Fri. My Neurologist told me to take 2000MG and did not think much of my numbers. He also said he did not think this was my issue and gave me a pill. My symptoms.
Light headed ( I feel like I had a few drinks)
Vision gets a little blurry ( been to the eye doctor already)
Some Ear pain but better now. I was told I had an inner ear issue but they were wrong.
Joints hurt, but I'm thinking it's Arthritis
Teeth hurt - went to an Oral surgeon and he said it was TMJ which seems mostly better now.

My big questions........... Did anybody who had a vitamin D deficiency who started taking a high dose of D3 feel better as far as the light headedness? How long did it take? The light headiness is my biggest issue
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I have a friend his level is 9ng but he feels fine and he just complain about pain what I think all we have anxiety and depression problem ?
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I have a friend his level is 9ng but he feels fine and he just complain about pain what I think all we have anxiety and depression problem ?
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I know you asked this question a long time ago and answering it may help someone else. Yes the light-headedness goes away. It will also be one of the first symptoms to return if your d levels drop again. I always get light-headed and my nausea returns when they start to drop again.
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I'm a 43 year old healthy male. In April I had a respiratory illness and was over prescribed the steroid prednisone. I believe this contributed to my already low vitamin D levels. I had no idea at the time what was happening to me, and felt as if I were losing my mind. It wasn't until last month Oct. 2014, I was diagnosed with vitamin D deficiency (level was a 12). Ive been prescribed 5000 units of D3. I'm also taking a  good magnesium supplement called Natural Calm. After only one month I'm starting to feel a little better, and I'm so grateful because my symptoms are no joke:

Hypnic jerk in throat & involuntary swallowing, I felt like I had to swallow constantly this was scarey because I couldn't even find the correct words to describe it for so long, and because of the swallowing I was spitting nonstop. I'm still struggling with some of the swallowing, but it isn't nearly as bad as it's been.

very high anxiety
sudden panic attacks
depression
feeling as if something was crawling in my skin

burning sensations on my skin at different times ( I had this for years and I'm guessing this is also associated with VDD)

very bad migraines
bad concentration
night sweats
one of my hands gets very cold, and one hand remains warm

My life was falling apart I'm beginning to slowly recover. I have another appointment with my Doctor next month to check my levels and see what is going on. I'm so grateful for the clarity I've received here. It's really helping me to understand how serious this deficiency is. My heart goes out to you all.
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Hello
Thanks so much for updating the site on your progress.  It is good to hear you have felt some impact after a month.  Reassuring to know. All the best for your continued recovery.

How much magnesium did you take?

I was diagnosed on Monday 10th Nov,  my level is no where near as low as yours (24) but all our bodies are different and react differently to low Vit D.  I have neurological problems which are very worrying, numbness and stiffness in hands and feet, bone pain all over, fatigue and sweats.  

I also had tremors, concentration problems and headaches, low mood too.  However these have improved after B12 for last month.  
I am now taking 2000IU D3 and Chelated Magnesium 2-300mg.  

Thanks for your input.  It would be good to know if I'm taking enough Magnesium and what sort is best . Every good wish your your recovery.

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Wow, reading all this, for the first time in almost 3 years I have found someone who is going through the same things I am. Thanks for this group, you give me hope :)
My story
2010: I was put on bedrest in the spring, pregnant with twins that ended up being born very premature. I was bedrested 24/7 for 6 weeks, after that we spent all our time inside the hospital until autum with the twins. My health was surprisingly good despite all these things
2011: Late 2011 I started having a little nausea, always thinking I was going to be sick but that wasnt. Slowly it got worse
2012: I was very tired, at home with my twins, they where sick alot and needed a lot of care. I started working again in the fall and had than been having
-mild bone pain
-abdominal pain, felt like I had been hit in the stomach
-nausea
when I started working everything started to get worse.
2013:
-I was diagnosed with endometriosis
-started having flu symptoms very regulary
-bone pain
-cramps in fingers
-extremly fatigue
-trouble concentrating
-memory loss
-having hard time finding words
-always getting sick when having my period
-loss of appetite
-loss of libido
-lost 13kg over 9 months
-vision problems, loss of vision
-feeling being unwell
-sinusitis
-pneumonia
2014:In january I went to the ER, got MRI of my head, ENT tests which all came back normal and the final diagnosis was migraine. The things that got worse or where new this year are
-chronic headache
-brainfog
-unable to think and hold up conversation
-always feeling unwell
-started loosing time at work, only able to get to work 2-3 days at a week
-hip pain
-pain in legs that no pain medicine I have work one
-feeling like have no feeling under my feets
-vertigo
-dizzinesss
-lightheaded
-ear pain
-pressure in ear
-sinusitis
-pneumonia
-feeling really cold
-feeling really hot
-pressure in chin bones
-pressure in eyes
-feeling I have stone in my head, so heavy and nonfunctional
-felt like my brain was paralised and the function was just to keep me alive
-no energy
-could not take care of my twins or anything at home
-eye muscles in pain and very bad feeling in eyes, just want to lay down and close my eyes
-stopped working in april
-in may I got the diagnosis of having a burnout and got told to stop working for 2-3 months and recover
-week later, got my D-vitamin results 24nmol/l (10ng/ml)
-started taking 1000IU  and after very short time I started feeling better in my head
-august I upped my dosage to 4000IU and have a long way a head in recovery, my energy levels are extremly low, my head is much better but still a long only having one day at a time feeling almost good but limited because of low energy. I am a part of my family now, take care of my boys at some point, help with everything in the house as I can. I have starting having a good bodyfeeling for just a small time but always getting longer periods (started 0min but now sometimes hours)

I think my symptoms are mostly do to the D vitamin deficiency not the burnout but burnout might be a part of it. I work hard and push my limits all the time to keep on with my recovery. This is a rollercoster and I still get a bad periods that can last for weeks but slowly the good things are coming more frequent.

I am probably forgetten a lot of things and you can ask anything :)
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forgot a symptom
-very low blood pressure 84/54 sometimes lower
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I know this is a weird thing to say but, I am so glad I came across this thread and saw everyone's symptoms. Just knowing that there are people out there who have gone through this and starting to come out the other side brings me so much hope. I am on 20,000IU and my level in the American units is 9 I believe (23 in the UK, I believe you divide by 2.5?) Trying to list my symptoms....

No concentration.
Constant fatigue no matter how much I sleep.
Losing eyesight focus.
Lose stools.
Constant fogginess.
Forgetting words or names of people that I know. Such as a Nephew and feeling confused why I could not bring it to mind.
Anxiety, fear it was a heart attack.
Chest pains.
Back Pains.
Arm pains.
Hip Pains.
Feet Pains.
Wrist pains.
Numb arms and face.
Hypertensive.
Muscle weakness (not feeling like I would make it to the top of the stairs).
Night swets.
Heart palpitations.

I felt like I was on my way out. I was constantly fearing I had something and the doctors were not finding it and this was going to kill me. This made the anxiety worse as my wife became pregnant with her first child.

I have had mild forms of these symptoms about ten years ago for a winter but, it got better. This time round it started 3 years ago and has just got worse. I maybe should have spotted the signs as I started to feel ok in the middle of summer.

Even though it has only been 1 1/2 weeks since takings the supplements the fogginess has eased a little and some of the symptoms are calming down. Say by 10% the pains have been much more painful although only lasting in shorter bursts. The anxiety is still there even though I know it is not the heart as I have been tested. Loads of other tests such as MRI have been done.

The thing that really annoys me is due to the chest pains I ended up in A&E were they took blood tests and I want to find out if this showed Vit D issues as this was 10 months ago and I could be much further along the road to recovery. Although to be far I do not think they were testing Vitamin levels as they were suspecting heart attack (This came back as fine).

I hope everyone starts to feel better soon and wish you all well.


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