Avatar universal


Hey everyone!
I thought it might be a good idea to have a thread solely about updates on peoples progress. We with vdd need all the good news we can get!

I started out d therapy in November 2010. I jumped right in with 10,000 iu/ day. Starting level was 9 ng/ml. Retest was done in February and am now 38. I reduced my dose to 5000iu/day. I'm having longer periods of time when I feel sooo much better ( hours at a time)! I still have some symptoms, but, not as constant and my recovery times are muuuuch better. I can totally see the light at the end of the tunnel and think I'll be having a pain free summer!
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16854144 tn?1456517590
Hello All-
I'm new to these forums and i am so happy that SOMEONE is posting their recovery. I can see that these posts are from a while ago but unfortunately Vitamin D Deficiency is still apparent and no one understands truly how it affects a person unless you are a person going through the whole shebang, AND I am seeking some encouragement 5 years later. :)  
I am 3 months into treatment, (started with a level of 18 in Sept. 2015). Just was retested last week (Dec. 29 2015) and levels were great, a nice 73! I am happy to see my levels go up, but I really was wishing i was back to my old self again without the anxiety, slight paranoia of the 'what if', the RANDOM extreme fatigue, I have sternum pain as well (i have had my heart checked and i'm as healthy as they could get).

Symptoms that are light to none exsisting (for those of you new to the deficiency):
Dizziness/Faint feeling
Heart Skips/Palpitations
Random Crying Spells
Shortness of breath/associated with panic

I'm reaching out to you all because I see time is of the essence with vitamin d deficiency, and I am assuming since I dont see many posts after 2013 that you guys are feeling GREAT!

Is there HOPE/Life/Success after vitamin d deficiency or do people just get tired of posting about how they feel. (all jokes aside) PLEASE, just want to know I am not crazy, and it will get better, and I will survive.
Helpful - 1
Avatar universal
Wanted to post a recovery story... about 10 weeks ago I went to the doctor with loads of nonspecific problems.  I am an otherwise healthy 30 year old woman.  I thought I was suffering from anxiety or panic attacks (though I had no history of such things).  In a list, I felt:

-extremely lethargic (was basically not able to get off the couch - literally)
-nervous and anxious to a point that I was leaning towards nonfunctional
-had panic episodes at random times, doing things that I have never experienced panic doing before! (like shopping or hanging out with my husband)
-a sensation like dizziness, but not dizziness - more like being chronically off balance or the sensation of floating as if on a boat
-feeling "out of it" all the time, as if I was crazy or in some kind of bubble, disassociation from real life

(I should note that I live in the Middle East in a conservative country where we cover our legs and arms daily and the weather is too hot to go outside 3 months a year and too dusty for much of the rest!)

The doctor did a series of tests and everything was totally normal except for a big Vitamin D deficiency (40.64 nmol/L).  He said to me, it's no wonder you feel like crap.  I am so grateful he tested me for it right off the bat.  He put me on a megadose of 50,000 D3 for 10 weeks and told me to come back for retest after that point.  He swore that if my levels came up I would recover completely.  I was skeptical to say the least, I couldn't (and didn't) believe that a vitamin deficiency could cause such terrifying symptoms.  He explained to me that it affects everyone differently.  

So, I dutifully took the dosage once a week as prescribed and after 4-6 weeks noticed a HUGE difference.  Now, at 10 weeks out, I feel like a new person.  I realize that not everyone is as lucky as I am, but I feel great - almost normal.  I am going back next week to get my levels retested but am sure they have come back into the normal ranges.

Just wanted to share a real-world story!  Not everyone has the same symptoms or experiences, but these are mine and I hope sharing can help others.  I am so thankful my doctor was up on these deficiencies and didn't think I was crazy!

Helpful - 1
Avatar universal
I got this from another website, somebody's success / update story, I hope I recover as fast as her. Hope this gives hope to somebody

Patty says:
February 8, 2011 at 4:05 pm

Back in Oct. 2010, I was diagnosed with vit. D deficiency (level was a 17). My endocronologist prescribed me 50,000 IU of D3 a week for 8 weeks. My levels went up to 56 within that time (levels should be 50 or above). I was feeling so much better: more energy, less brain fog, less aches and pains, less irritable, etc. After stopping the megadose of D3, I started taking OTC Vit. D3 (5,000 D3/day, plus multivit. with another 1,000 IU of D3)for about a month. My levels went back down to 30, so Dr. put me back on another Rx of 50,000/week for another 8 weeks. It’s now week 3, and I feel great again. I haven’t felt this good in years! I have been feeling awful/tired for years. I was misdiagnosed with Chronic Fatigue Syndrome back in the 1990s, so I thought it was that for a long time. Another doctor told me it was my diet, so I changed the way I was eating, i.e., less sugar/carbs. At least I know now what the real problem is…thank goodness! Dr. said may have to keep me on the prescrip. for rest of my life. I am ok with that as long as I feel as good as I have been feeling the last few weeks. So for those of you who want success story, I guess mine is. So far, so good.
Helpful - 0
Avatar universal
Phyllis: I too still get migraine. I thought at first that they were going away at last, but they returned 1-2 months ago. Like you, I'm waiting to see if they are actually reduced in frequency. I'm pretty sure they have decreased in intensity and duration though.

So latest update for me is: I'm experiencing almost no bone pain, still. However, I'm getting my butt kicked by some heavy duty depression and food cravings. Not sure what's going on there. I did reduce the amount of d I was taking. Maybe I did so too early? Any thoughts?
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Avatar universal
As to migraine, I hope mine had disappeared too but they have returned. It's raining a lot in NYC and the weather affects my migraines as do certain food triggers so it's too early for me to comment on whether anything about them has changed. Hey, vitamin D can't cure everything!!!!

Well, I think that vitamin D is a neurohormone and as such can influence mood (and possibly food cravings). Again it would be interesting if scientists investigated the effect of vitamin D on serotonin production etc in the brain -- but since it's not a Big Pharma drug that's unlikely. I've noticed that when I up my D dose it makes me feel kind of up almost high (as it does another friend of mine) so I imagine that decreasing it could have the opposite effect. I'd like to up my dose from 4400 IUs to 5400 IUs but the physicians want me to hold off doing so until my next blood test in June. In the absence of data, yes, based on my experience I think vitamin D might influence mood and possibly food cravings. Someone should study this.
Helpful - 0
1156694 tn?1265210026
Good thread to start.
Found out I was VDD in January 2010.  My level was 11ng/ml  ( I asked for the test, but my MD was just humoring me.  He sure was surprised by the result)  I was placed on 50,000IU of the rx D2.  
April 2010 level was 36ng/ml and I was feeling about 50% better. (still on 50,000IUD2)
August 2010 had me at 40ng/ml.  Not much progress with level or symtoms. (On 50,000IU D2 and we added 2000IU of the D3
November 2010 level was 53mg/ml.  Probably 75% better overall with my symptoms (continued on 50,000IU D2 and 2000IU of D3)
February 2011 Level is 57ng/ml  Holding steady on improvement. Doctor takes me off of the 50,000IU D2 and has me stay on the 2000IU.
I did catch some kind of virus in February and to this day have had difficulties shaking it.
We did check my Vitamin D in March, but it was remaining stable.  My next check will be the end of May.

Symptoms that are gone:
sensitive eyes
ringing or humming in my ears
extreme fatigue
difficulty concentrating

Symptoms that are 50% (or more) better:
blurred vision
seeing things out of the corner of my eye, but when I turn there is nothing unusual
tingling at the end of my nose and in my gums
joint pain and morning stiffness
muscle pain
muscle twitching (very rare now)
lower extremity feeling of something crawling on my skin
easily stressed
not as cranky

Little or no change:
off balance feeling..like I am on a boat
unconscious movement of one or more toes

Over all I am doing so much better than I was.  Still can't work more than 2 days in a row or I get worn out. (I am in the medical field)
Helpful - 0
Avatar universal
Just hit the  5 months (still going) of d therapy and I'm happy to say I'm feeling MUCH better! That being said, last month was a nightmare...
Just when I thought I felt improvement, BAM!, I took what felt like a dive for the worse. A few things contributed to this, I think:
1. I got great test results and per the doctor lowered my d intake by 1/2. (. 10k/day to 5)
2. I've noticed that major or even minor improvement seems to be preceded by a bad spell

So... Lowering d too fast and too soon is a baaad idea!

I'm back on 10k/day and feeling really good consistently for the first time in years!!! Not 100% but I'd say 75-80%!!!
Estimates of 3-6 months to feel improvement seem to be spot on:)
Helpful - 0
Avatar universal
Good post, great observations, thanks. I've noticed the same thing that major or minor improvements are always preceded by a bad spell...Also, you've confirmed my instinct that lowering d might be a bad idea. I wonder how to arrive at an adequate maintenance dose? Titrate down very slowly. Or, should therapy at an established dose continue long term?...I'm with you at 75-85% improved, at least at present.
Helpful - 0
Avatar universal
Phyllis: good question! I'm thinking the titration approach will be best... And during early summer months would be ideal. (when sun exposure can pick up any slack) once the fall/ winter months I plan on taking no less than 5k/day to maintain good levels. I NEVER will be deficient again :) also it's been shown that higher d levels are as good as a flu shot at preventing flu! So thru flu season I'll be taking 5k+.
Helpful - 0
Avatar universal
This is a great thread you started! I am praying to read about somebody who recovered 100%, I'm reaaally getting impatient and frustrated and sad etc..  I've been feeling weak and weird for 7 months now, although I I only discovered I was low late January 2011

Heres my update

October 2010 - Extreme Fatigue and weakness, Head aches, Dizzy Spells, inability to cope, Tingling Fingers and Feet, Sickness, Muscle Twitching, Muscle Pain

December 2010 - Tingling Fingers and Feet Gone 90% though I think it was because of B complex supplements my sister recomended. New symptom appeared; always drowsy!!

January 2011 - Found out I was 63 nmol/L (not too low like the others but I the feeling was still unbearable) Started on 2000 IU per day.

March 2011 - Muscle Pain 100% gone, Muscle Twitching reduced by 50% I think, STIL TIRED AND WEAK

Today - Still lethargic and weak,. I'm very new to the thread that is why I probably don't know much like the others. After 3 months of 2000IU and not feeling much improvement, I worry sometimes that its something else, I hope not,.. my sister said i should wait and see. after all,  thats the only thing wrong that came up in my blood test, everything else was pretty okay..

Helpful - 0
Avatar universal
Thanks for posting! At three months you might start feeling a change for the better, but you are likely to still be healing some major stuff and might experience the rollercoaster ups and downs. My fatigue JUST STARTED resolving at 5 months. Do not lower your dose until you are feeling great for several months in a row AND when you do reduce do so slowly over time - that is just my opinion... I lowered after 3 months because my dr. Said to ( after my test results showed improvement ) big big mistake!! I spiraled down for a month until I returned to 10k/ day. My theory on this is that just because the numbers are up for the first time in years doesn't mean your body is fully healed and it's still utilizing more than normal levels to keep healing. Also, because 'vitamin' D is actually a hormone, dropping intake too fast messes up the balance of everything dramatically. Hang in there! Most ppl need to be on d for 6-12 months... And even after normalized 1-2k /day forever is probably wise if you don't get enough sun year round.
Helpful - 0
Avatar universal
WOW 5 months and your fatigue is completely gone? :) Extreme fatigue is what actually brings me down because my line of work needs at least 8 hours per day. Some days just 3 hours wipes me out totally, then finishing up the day would be a struggle. After 3 MOnths on 2000 IU, My head aches are almost completely gone. I only get dizzy sometimes from being in front of the computer for hours ( I edit with my PC for work so I'm pretty much glued to it).

Just an insight on how this might have happened to me. May 2010, my office space got renovated! I got really exited to work so I did go to my office from Monday to Sunday for at least 10 hours day for half a year. I hardly got hit by the sun for half a year.

Now my observation is, alot of people don't get hit by the sun too, some even avoid it, so WHY MEEE,.. i wonder if poor diet and stress is a factor because I was really stressed and even skipped some meals if i had to work.
Helpful - 0
Avatar universal
Well my guess is that in addition to the six months of no sun, you also live in a region quite far from the equator, in a climate not known for quality sunshine except in a few months in summer- making you susceptible; also that you used sunscreen when outside? Maybe you don't even go outside much at all with your arms and legs bared? Other contributing factors are age, weight, skin type. It takes a very long time to drop to levels low enough to have most symptoms... Once you are on the borderline and continue to drop you get sick more often, start experiencing bouts of tiredness notice more aches and pains...then as you become chronically low and lower you are sick almost as often as you are well, tired to the point of exhaustion, experiencing some of the odder symptoms, torn down by excersise as opposed to being built up.... Etc. We are sort of lucky that it only takes months to recover from what took years to happen. Sort of. Could be that the ppl who don't suffer deficiency symptoms get built up enough by spending lots of time outside every summer.. Or maybe they go tanning in the winter. Or maybe they are just hovering on the right side of asymptomatic and symptomatic.. Who knows?
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Avatar universal
I'm from a tropical country actually, the 6 months in the office for half a year was my guess how something like this could happen, I was locked up editing in a tight sealed room for 10 to 12 hours a day. Thats why its also frustrating how I have been sun bathing for 3 months with little progress. (I'm really thankful for the syptoms that disappeared btw)

Somebody gave me your typical multi vitamins, the one like centrum, is it advisable to take this also? Will it interfere with my D supplements? it has 400 Iu of D in it plus alot more like C E A iron etc..
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Avatar universal
I also take a Centrum-like vitamin, though not Centrum, and for what it's worth my physicians (endocrinologist, thyroid specialist) have said it's okay to take it along with the vitamin D supplements. In my case it just adds 400 IUs more of D3 onto the 4000 IUs of D3 I take daily. I'm also taking calcium and magnesium so I'd check the vitamin to see how much magnesium you'll be getting as too much of that causes diarrhea, which can easily be reversed by cutting back the magnesium. I hope this helps.
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Avatar universal
I agree totally with Phyllis :)
I am sure that sun bathing has helped a lot!
It's the most natural way to get your d after all. Man, if you all in the tropics (lucky you!) are getting deficient, we in the north are in serious [email protected]! Lol! So little research has been done on d deficiency.. Though it getting a bit better. I'd love to see a study on stress and d levels. I think there is a connection, but can't prove it.
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Avatar universal
Hey guys, is it true that if you take a bath, you wash away vitamin that you got from the sun? I have been doing some research and stumbled on a couple of readings that talk about it. Although I'm not sure if this is credible, the information would help alot.
Helpful - 0
Avatar universal
Well there are conflicting theories and studies on this issue. Take a look at :

Scroll down the page and it's the second question asked.

Seems it's inconclusive. I tend to think the truth is somewhere in the middle. D production happens both on the surface and in deeper layers of the skin. So... While washing after sunbathing washes some of it away, it doesn't wash all of it away. Tanning beds have been shown to raise levels here in the US and that simply wouldn't happen if showering/ bathing negated the process. (I use the US as example because we bath almost too often ) If you're up for experimenting, you could just do a pit/groin kind of wash for the 24-48 hours after, but, if you're sunbathing 3 times a week you'd never get a bath lol! Maybe on the weekend(?) OR you could just wait to bath for 12hrs or something. I honestly don't think bathing will hurt...
Helpful - 0
Avatar universal
Thanks for the link, the entire site was really helpful. Based on what I have read, I think it is true that you lose vitamin D when you take a bath. Oh well, recovering just got a little bit more complicated than it is already. Thanks for helping me with information, I hope I'm not flooding the forum with tons of questions.
Helpful - 0
Avatar universal
That's what the forum is for :)
Yeah, you do lose some with bathing, but not all. Given that you make LOTS while sunbathing allows for loss of a portion. A study of lifeguards showed that they regularly tested at levels of 100... One can assume they both spent time in the water and bathed regularly.
Helpful - 0
Avatar universal
Great idea, Seattleanne. I start with a vitamin D level of 20 ng/ml at the end of May, 2010 and tons of symptoms as described in the symptom thread. I began on doses of 50,000 IUs D2 twice weekly and experienced horrible side effects (5 of those listed on the package insert). I stopped taking D, joined the Forum, and then began taking D3 gel caps. I started with 2000 IUs a day but my D levels only went up to 27 in early July 2010 and then down to 24 in late July 2010. So, I then upped my dose to 3400 IUs taken 3 times daily to maintain a steady state and by October 15 by levels had reached 30.6 and I was starting to feel a bit better. I then upped my dose to 4400 IUs and the improvement in my symptoms (after an initial problem of bone/joint/nerve dysfunction/pain) continued. By December my D levels hit 41.0 ng/ml and I was feeling dramatic improvement with most symptoms resolved or resolving. Also, I should add that my blood calcium levels which had risen to 10..4 at the end of May 2010 were now down to 9.3. At present, I'm advised by two physicians to stay on my dose of 4400 IUs; however, my instincts tell me I should up it to 5400 IUs so I may insist on a blood test earlier than July. Since I feel better in direct relationship to the increase in my D levels I'd like to get into the 60s or 70s.

Of course, I still have "issues" which I believe are probably unrelated to vitamin D. I'm healing from a pinched nerve in my back -- the D, I believe helped in this recovery, but I'm not 100%. However, I'm back at the gym 5-6 days per week and trying to gradually increase my walking. I no longer use a cane. Also, I still have migraine and it remains TBD if the vitamin D is reducing their frequency.
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Avatar universal
Thanks beebreeze!
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Avatar universal
I thought I'd write an update since my first post.. Well, it's not much of an update because not much has changed, but I want to contribute to keeping this place alive as it's been very helpful, and I find it a little therapeutic after yet another sleepless night..

The last time I wrote something here I was having a good day and was pretty positive about my recovery, and I still am most of the time. The problem is this changes multiple times a day as I feel better or worse.. I don't know if it's like this for anyone else, but the way I feel is very connected to how much vitamin D is in my system. For me the worst parts have always been the headaches and dizzyness, and right now there are three distinct symptoms:

When I take vitamin D, I get a headache. It doesn't matter how much I take, it just affects how long it lasts. If I take, say, more than 2000 IUs, I'll also get the bone pain.

When the D "wears off", the headache disappears and slowly but surely this dizzy feeling comes back, and if I let it go far enough it's accompanied by a very different, "electric" sort of headache.

It seems strange to me that my symptoms should be so dependent on how much D I have taken. The effect is much like that of a painkiller, it's immediate, lasts for a few hours (depending on how much) and then it wears off.. I'm wondering if it's like this for anyone else? I find myself constantly wanting to confirm to myself that it is indeed VDD that's causing all this and it's just taking time..

I much prefer the headaches over the dizzyness, so I keep taking the D. I've figured out I can take a 2400 or 5000 IU pill before going to bed along with some ibuprofen (painkiller), and then I can sleep through most of it and be functional the next day.. It's not what I'd call a good nights sleep but I'll take that over no sleep like this last night.

Sorry for the wall of text, I always end up remembering more things I want to write as I'm still writing.. Wishing a good recovery to all
Helpful - 0
1536712 tn?1294043301
I can sooo relate to dizziness and headaches - those are the two symptoms bothering me the most lately. Accompanied by numbness/oversensitivity.

Oh well, what I wanted to say is that I have never experienced symptoms as a direct result of taking the D myself, but I guess you are pretty sure that's what it is? Could you try another brand of pills, maybe dry formula (if the ones you take are gel caps)?

Another thought is if you could try getting your D from sun or tanning instead? It is very effective, and you only need 15-20 minutes of good sun (mid-day sun when your shadow is shorter that yourself) to get more than 10 000 IUs of D3.

This recovery sure is loooooong - I'm often demotivated myself, and some days when I'm particularly 'down' and feel really bad, I'm certain that there's something else wrong with me. I think it is important for us to stay positive and believe that we'll be completely healed soon :)

Wishing you a good recovery, too!

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