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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.
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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)
-depressed
-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!


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Avatar universal
Interesting, Dr. John Cannell of the Vit D Council says 5,000 units is not toxic:
http://www.youtube.com/watch?v=_3thFlu0-ws&NR=1
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Avatar universal
It can be from the same lab.  The articles suggest that if the lab is using mass spec method, the test results can vary widely even from the same lab.
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Avatar universal
I've posted Dr Holick's answer to my question on the long term toxicity of high dose vitamin D. Unfortunately he's adhering to the party line....

Can taking high doses of vitamin D3 (5000 IUs-10,000 IUs) on a long term basis for D deficiency damage the kidneys, particularly in persons over 60 years?

Reply
admin
Posted June 21, 2011 at 2:40 pm | Permalink

I recommend that adults take 2000-3000 IU of vitamin D a day. Although it has been shown that adults can take up to 10,000 IU of vitamin D a day for up to five months without any toxicity we do not know whether continuing to take 10,000 IU of vitamin D a day for more than five months will cause toxicity including damaging the kidneys. Therefore unless you are obese I do not believe that you need to be taking 5000-10,000 IU of vitamin D a day.

fortunately, he's adhering to the party line. Here's his answer.

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Avatar universal
Good suggestion but I've already followed it -- all my D tests are run at the same lab using the same methodology. So, I'm fluctuating not the lab....Thanks
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Avatar universal
I tried to post on this thread but it popped up as a separate thread.  Please read what I posted regarding inconsistencies among testing methods.  I would check to see which methodology your lab uses.  Thanks for eveyone posting here.  It has kept me sane during my bout with VDD.  Take care  
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Avatar universal
Thanks Carrie that's a good suggestion!!! I am curious about possible long term effects of high dosage levels.
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1670015 tn?1310588684
Hi Phyllis,  Sorry to hear about your results but at least your symptoms haven't returned so hopefully getting back on the higher doses will get your levels back up.

I haven't read anything about sustained high dosage affecting the kidneys but if you go to Dr Holicks site you can post an individual question and he or a member of his team will reply to you.  It can take a few days but at least you get an answer and they also post Q&A on the noticeboard so it helps others as well.

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Avatar universal
Gadgets and SEattleanne thanks for your support and encouragement -- I need it right now to combat my frustration. Gadgets it helped to hear that you're combating your drop in D with 5000 IUs daily. I guess I'll do 5000 IUs for a month then insist the thyroid specialist do another blood test. Seattleanne, the fact that you've been on 10,000 IUs a day since November makes me feel I've got a great deal of leeway in terms of upward titration if I don't get improvement with 5000 IUs. I wonder if you can develop a tolerance to D? Why do they want to cut the dosage down or maintain it as soon as a patient hits decent levels? Can long term high dosage levels of D damage the kidneys? I guess I'm going to have to figure out the dosing since the docs don't seem to know and the recent Guidelines from the Endocrine Society aren't all that helpful. I'm just afraid of regressing to where I was before the start of therapy. Again, thanks to both of you for your help.
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1156694 tn?1265210026
That is good news.  I hope your improvement continues.  It is so great when things start going in the right direction.  
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Avatar universal
Hey all!
Some good news: Improvement is real! I have no idea what my numbers are (no insurance and can't afford the retest), BUT for the past two weeks my volunteer job has given me almost NO pain!! This is a huuuge deal. It's sort of physical work (animal shelter) and had been so painful over the past months that I had cut my hours back. Two weeks in a row now I leave with only minor stiffness and the good kind of sore you get with a workout. Granted... It's not that strenuous, but after years of debilitating pain.... Things are great! Also noticing a lot fewer symptoms overall :) I've been taking 10k iu/day since November in case anyone wonders.
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Avatar universal
Oh dear! I had heard that numbers can fluctuate especially when bringing them up from a low/long term deficiency... Don't be too disappointed! I think this supports the idea I have about our bodies still mending and using higher than normal amounts of d for quite some time. It also supports the notion of being re-tested several times a year until stability is attained. After my experience with my crash a few months ago, I know I won't be lowering my dose for some time.
Han in there, Phyllis!!! Glad you feel ok!!
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1156694 tn?1265210026
I am sorry to hear about the lowering of your numbers, I hope the increased dose will help.  Good news, though, that it didn't set you back (symptomatically) too much.
My Doctor took me off the high rx dose in February and put me on 2,000u D3 daily.  I dropped 20 points since then.  I talked him into letting me do 5,000u D3 daily.  (He didn't know that OTC came in that stregnth)  We will check the blood levels again in October.
I did notice with the drop that I had some increased fatigue and increased dizziness.  At least the pain was not back in full force.
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Avatar universal
I have an update and it's not good news. My vitamin D level which had risen to 41 on 4400 IUs daily has now crashed down to 28, even though I'm still taking 4400 IUs. (Remember, I'd suggested increasing to 5400 IUs daily and the endo vetoed it). Now, I'm starting on 5400 IUs to try to reclaim the ground I've lost. Fortunately, my symptoms have not returned -- a little jitteriness, back out -- but nothing like what I presented with at 20. I'm planning on having another blood test in a month. One problem I've identified is there's no way of being certain that the batch of vitamins your taking retains the labelled potency since it's an unregulated OTC product. I guess I'll stick with the same natural (not synthetic) brand of D3 since it got me up to 41 before. I've also decided not to go back to the endocrinologist but just stick with the internist and thyroid specialist and basically get my dosing advice from this Forum.
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Avatar universal
It's good to know I'm not the only one with the headaches and dizzyness, or always thinking I'm not getting better or that there's something else wrong.. When I catch myself doing that though, I remind myself how much better I feel now (at least on a good day) compared to when I was first diagnosed. The first time I can go through a day and not think about this at all, that's when I'm going to know I'm healed. And when that happens, I promise I'll come back here and write about it just so you'll know it's possible!

I've tried lots of different brands, liquid, gelcaps and dry tablets, so I'm pretty sure it's the D itself that's causing the headaches. I'm not too good at getting exposure to sunlight, so I should probably get better at that. Maybe it'll work better than the supplements. What I don't understand though is how sensitive my body is to the D. I was expecting a slow but somewhat steady improvement, and that has happened.. Overall I'm so much better now than I was half a year ago. But if I stop taking the supplements or take a too low dose for a few days, everything starts coming back, and if I take enough I'll have the headaches. This is strange to me, as I know my blood levels are good. Though it's been 2-3 months now since I had it checked, so maybe it's dropped again since then and I'm sort of hovering on the sufficient/deficient threshold..

For now I'm just going to keep taking enough to keep the symptoms from creeping back, it seems to be working. Hopefully it'll eventually have exorcised this thing out of me..
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Avatar universal
Yes, I definitely had symptoms (heart palpitations, weird head sensations, bone/muscle pain) in connection with vitamin D, particularly D2 megadoses but also D3. The way I solved the problem was to gradually increase my dose of D3 and to divide my dose (I take it 3 times daily). I gradually worked my way up to 4400 IUs daily, the dose I'm on now. However, as my D levels rise, I also experience bouts of symptoms. (Now that my D levels are in the normal range it's become clear that my migraines and back issues are unrelated to D deficiency).

I think that, although sun exposure might help, you should probably stick with D supplements because, if you're significantly deficient, you'd have to stay in the sun a very long time. (The older you get the longer the sun exposure required to get adequate D).

Good luck to you with your recovery!!!!
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1536712 tn?1294043301
9na
Hi!
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!

9na
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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
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Avatar universal
Thanks beebreeze!
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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.
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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.
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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.
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Avatar universal
Well there are conflicting theories and studies on this issue. Take a look at :
http://www.vitamindcouncil.org/newsletter/more-vitamin-d-questions-and-answers.shtml

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...
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