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recovery after vitamin D deficiency User Group
Why do i still having vitamin d deficiency symptoms after treatment?
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Founded by bisan on February 15, 2010
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Why do i still having vitamin d deficiency symptoms after treatment?

I am a 26 year old . Last July I started having palpitations, and I had been having dizzy spells. Of course the dr. checked my heart- no major problems. My thyroid level was ok.
I was still sick about 3 months later. By November I had dizziness, headaches, terrible back pain, rt ankle swelling/pain,pressure in rt eye/face, extreeeeme fatigue, loss of interest in anything, short of breath at times, mood swings, memory loss, and anxiety!!! I HAVE SEEN MULTIPLE SPECIALISTS- Cardio, Gastro,ENT, Neuro, OB/GYN,Endo and a Rheumatologist. After all these docs trying to put me on meds for everything from anxiety to high blood pressure, the endocrinologist finally tested my vitamin D level.

My vitamin D level was 11 ng/L !!, I thought I WAS DYING FOR MONTHS AND HAD ACCEPTED THE FACT. Pray, research, and demand thorough treatment. The only reason I discovered these problems was because I decided they would not find out what my illness was on autopsy.

The doctors, unfortunately, is not ALWAYS looking at you as an individual, but as a textbook case. My endocrinologist (2nd in 4 months) prescribed 50,000 I.U. 2 times a week for 4 weeks and then it decreases to  times a week for 4 weeks.
Now my level 85 ng/L ,I am frustrated that I still having some symptoms,I have been living in HELL for the past 8 months and I am looking forward to heaven on earth again!!! Have a little faith.
please any one who been treated with vitamin d3 are your symptoms better?
Thank you for any comments/info you have to offer..God bless
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16 Comments
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1156694_tn?1265213626
I am only 5 weeks into treatment.  Currently taking 50,000IU weekly.  My level was the same as yours.  Friends who have seen me lately say I have better color in my cheeks and seem to have a little bit more energy.  I have read that it can take months (3 to 9 or more) to get back they way you were, if your symptoms are do to Vitamin D def.  You wrote "I still having some symptoms"  Does this mean some others are improving?  If so, I say keep moving forward.  
Here's an insert from my journal about my journey to this point:

Well this journey starts out 5/09.  I began to have some slight problems with balance and had a couple of falls.  Late 6/09 symptoms of being " off balance" progressed to the point that I could not stand up.  Started having extreme fatigue associated with it.  Now I have had a lot of fatigue prior to this.  I was diagnosed with Vitamin B12 def. a couple of years earlier and even with injections could barely get my numbers up into a more "normal" range.  This fatigue was different.  I may be up (not standing, but awake and communicating) for 20 minutes to and hour and then would need to lay down and sleep for several hours.  

These "extreme" symptoms lasted for several weeks.  My primary care physicians felt my symptoms were related to an inner ear viral infection, but they did start me on a round of prednisone and and antibiotic just in case.  I did seem to respond to the prednisone/antibiotic after about a week and symptoms improved enough to return to work.  They also did a brain MRI that was normal. wheww no tumor.  A month later I finally had my appointment with the ENT office.  I didn't get to see the doctor, but a mid level did my work up.  They also did a hearing test.  They requested I return for a ENG? (not sure if that is what it is called) where the do tests to check how my eyes track moving objects and they blow warm air into my ears.  I did fine until they blew warm air into my left ear.  Boy the room was spinning.  I told the tech that I was so grateful I didn't have that type of vertigo.  It was bad enough I almost vomited.  A couple of weeks later I was called by a nurse that said my test showed that I had left sided benign positional vertigo.  They asked me to come in to learn some movements that might help.  This was mid September.

It was the start of October before my schedule and theirs worked together.  In the meantime, I had looked up benign positional vertigo.  Even though they could induce the symptoms, I felt that this was not what my problem was.  I went in and saw the mid level again for all of 5 minutes while she showed me my exercises.  I told her I felt this was not my problem, but would do the exercises for 30 days to see if I improved.  About three weeks into the exercise, I had probably 5 % improvement, if any, and called back the office.  This time I demanded to see one of the physicians.  The 2nd week of November I finally saw the ENT doctor.  After taking a look at me and reviewing my chart he stated, "I don't think your symptoms are ear related.  I would like for you to see a Neurologist to see what they think."  

OK, this doctor was nice, but I am a little upset.  I have been having daily symptoms since June. 5 months.  I wonder if I had actually seen the doctor sooner, would this referral be put into the motions earlier.  However the referral coordinator at my primary care office is a miracle worker.  She knew I wanted to get my referrals in before the end of the year.  She was able to get the neurologist and the opthamologist appointments in.  

The opthamologist was first up to bat.  He did a thorough exam and pronounced my eyes in excellent health.  He felt this was an ENT thing.  The neurologist was next.  He did his exam and said there was nothing he could see.  He did review the MRI and said "well, there is no MS.  I think it is ear related."  Both doctors up to bat and both strike out.  Now where to go?  Now this whole time I had described my "off balance" symptom as vertigo or dizziness.  I think every physician who hears those descriptions automatically think that "spinning" type of dizziness or lightheadedness.  This is when I went to town trying to find out a better description and came up with an off balance feeling, like being on a boat.

I turned to the internet with the search phrase "off balance" and found this website.  I placed a question in the undiagnosed symptoms forum and a very nice person responded.  They said to have my heavy metals checked (I do live and a very old home) and my vitamin levels checked.  I begged my primary care physician to do this saying I am just shooting in the dark.  The heavy metal panel was fine, but the Vitamin D was very low at 11.  Normal for the lab was above 30.  My primary care felt this needed to be treated.  We made an appointment with the Endocrinologist (since I have Type 2 diabetes, Vitamin B12 def. and now Vitamin D def.).  The soonest they could get me in is March 2010, but asked my primary care to start me on Vitamin D 50,000IU weekly until my appt.  Now that is a huge number.  I started my first pill today.  20 minutes after taking the pill, I felt dizzy, shaky and nauseated.  (Similar to when my blood sugar is low, but it wasn't)  My BP was higher than normal 152/94 and I had a headache.  I hope this doesn't happen each time I take it.  Only time will tell.

In the meantime, I will monitor my symptoms.  Besides the feeling of being off balance and fatigue, I have general muscle and joint aches. (Sometimes very painful.  It has taken me over an hour to write this much due to the pain in my hands) My eyes are very sensitive to bright lights.  Occasionally, I get numbness to my scalp near my ear.  Who knows what symptoms are Vitamin D deficiency related and what other symptoms I have that I just haven't attributed to this.  I hope to get on and write in this journal on a regular basis.

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681148_tn?1285160820
Vitamin D deficiency nearly killed me, too.  I am certain I came very close to developing a case of Parkinson's, because right around the same time that I had a vicious virus that started out as mild Shingles, my friend had the same virus.  I had this virus that nearly killed me and had every changing symptoms that led me to several trips to the ER for a whole month, but my friend had the exact thing for two whole months.  And, I'm talking about being in bed nearly 24/7 without the least exaggeration.  Any major news items that might have happened during that month went right past me, as I was too sick to care about watching TV or listening to the radio.  Same thing with my friend.  It was right after this virus hit us that my friend started having symptoms of Parkinson's.

I later learned about a naturopath I could see with a sliding fee schedule.  Her interest in testing my vitamin D levels clearly saved my life.  In order to have my tests covered by my insurance, she wrote down which tests she wanted done, which included vitamin D, and sent me to see my PCP (my conventional doctor).  I am fortunate in one way, because my conventional doctor is open-minded toward natural medicine.  The clinic she works in has the naturopath intern graduates from the natural university working with the same patients in the clinic's after hours.  My own naturopath was from this university as well, but she works in a natural clinic and is no longer a student.  This is very helpful to low-income patients who would otherwise not be able to afford to see a naturopath.

Anyway, my conventional doctor agreed to test the vitamin D levels, partly because of her being open-minded, and because we needed to get to the bottom of why I was getting sick all the time and had all this pain all the time.  That's something I've had for many years, too.  When the tests came back, my vitamin D was so low, it alarmed my conventional doctor.  It was only 8.  That's right--8--not 11, but 8.  Very few people get lower than that.

I had to take the weekly 50,000 iu vitamin D2 mega dose, plus 2,000 iu vitamin D3 everyday.  I was tested again six months later and my vitamin D levels did go up to low normal.  Since that time, even though I am still taking 6,000 iu vitamin D3 everyday, I have been tested at least one other time.  I still can't get my vitamin D levels above low normal.  And, here my doctor was terrified that my continuing to take 6,000 iu D3 everyday was going to make me test too high.  NO, I don't think I'll ever be too high, because while I'm not deficient now, I'll always have to supplement with high doses like this or my levels will plummet and take a nose dive again.  This is pretty obvious, since I seem to barely be able to maintain low normal.

One of the reasons why my doctor decided that I was correct about having Fibromyalgia, and my symptoms of that have gotten worse since the official diagnosis, is because of this vitamin D deficiency that I'm always going to have to battle.  That and that we've gone through years and years of the process of elimination.  There is no one definitive test for Fibromyalgia.

I do believe that anyone who is dealing with vitamin D dysfunction or vitamin D deficiency does need to get tested for autoimmune disorders, so if you haven't gotten tested for autoimmune diseases you definitely need to do that.  The first one that they think of is Lupus.  That isn't the only one that the autoimmune markers may indicate.  Various arthritis diseases are determined with these tests, such as rheumatoid arthritis.  Celiac is another autoimmune disease that you'll want to look into, because vitamin D deficiency is an issue for people with Celiac as well.  And, people with Celiac are at risk of developing RA and osteoarthritis and osteoporosis at a younger age than others might develop it.  No reason to panic if you have Celiac, but you do need to be aware of it.  I do have an autoimmune disorder in my skin.  This is common for both Fibromyalgia and Celiac.  Many advance from eczema to psoriasis.  You should've seen the giant solid blisters I've had on my hands!  Strangers would be afraid to go near me, as if they can catch an autoimmune disease!  Autoimmune essentially indicates that the body's own immune system attacks itself.

My levels are better, but I'm still battling health issues that came to light after my vitamin D tested so severely low.  I will always have to pay close attention to my vitamin D levels.
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1156694_tn?1265213626
An update...
I have just finished 3 months of Vitamin D 50,000IU.  Wow what improvement already. People say I have color in my cheeks and much happier acting,  My fatigue and Ataxia (off balance) is improving.  I still wear out easy, but I have been able to return to work, at least part time.  My muscle pain is only requiring OTC meds.  Eyes are still sensitive.  I had my Vitamin D level checked and I am up to 36ng/ml.  Even though that is considered low normal, my Endocrinologist wants me to be closer to 60ng/ml.  I see him next week to find out if I will be staying on the high dose Vitamin D. (Most likely this will be a yes.)
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1183618_tn?1277368706
Oh, It's great to hear you're feeling better,this is an inspiration to all of us who struggles with vit D D.
Please take care of yourself and give us another update on how you're doing.I´m looking forward to hearing from you.
My best,
Bisan
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1216899_tn?1288573925
I'm right there with you on being your own advocate Bisan. I to had accepted the fact that I was dying, and was absolutely ready for it to come. I've had MRI's, blood work ups, psychiatrist exams. Been diagnosed with bipolar syndrome, depression, possible MS, one thing after the next. I've been on several anti-psychotic meds, and let me tell you, they messed me up good. It took going to a great MS neurologist to find what any doctor should have found. I'm really hoping that my nerve damage isn't permanent, as it is fairly painful.

On to a new path now, I'm really looking forward to the possibility of some....., any recovery. I still have my nerve conduction test next week, to find out the extent of the damage done.

I gotta say, it's nice to see people here, that know what I've been experiencing, as most people just don't have a clue. Half think I'm faking it, the other half doesn't know what to think.

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

Some info from the web:
http://drsorenson.blogspot.com/2009/01/does-vitamin-d-deficiency-relate-to.html
http://www.healthy.net/scr/article.aspx?Id=5815
http://www.easy-immune-health.com/Normal-Vitamin-D-level.html
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1528307_tn?1336004154
Well I learn something new everyday. I was talking to my sister on the phone the other day and she gives me the run down on her blood pressure, headaches, and low vitamin d. I was in some way a bit shocked because I was having the fluctuations of blood pressure and low vitamin d. I told her the headache is most likely related to the blood pressure. Well, recently my endocrinologist told me that my vit. d was 12 and that I should start on a supplement and spend some time in the sunlight as well. I have air hunger and fatigue that are currently bothering me the most. Since I am not big at swallowing pills I ended up getting gummy vitamin d....we will see how that works out for me on the next blood draw.
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1156694_tn?1265213626
I am assuming that you "gummy" Vitamin D is the OTC Vitamin D3.  How much are you taking at a time.  I have been on the prescription D2 for a year and OTC D3 2000IU since August.  Last check of my Vitamin D was in November and I was in the low 40's.  Just had my blood draw yesterday and am crossing my fingers that the level is better.  

I do want you to know that many of my symptoms have improved greatly. (Started seeing some improvement when my numbers hit 30ng/ml)  I rarely have headaches.  My fatigue is still there, but it has improved so much.  It used to be if I worked (I am a nurse) then by the end of my shift I could barely function. (I used to have to call my husband to come pick me up because I was afraid to drive with the way I felt).  Last week I worked 3 days and, although I was tired, I was not completely wiped out.

Let us know how you are doing with your numbers and your symptoms.  Somewhere in this forum Bisan started a thread for everyone to list their symptoms, if you haven't already done so please find the thread and put yours down.
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Avatar_m_tn
OMG, I have a story so similiar to yours. My Dr. fired me and didn't believe my symptoms weren't from my ears. I went through so much ear testing, and continual confusing dizziness, two types. I kept taking ambian thinking if I just got plenty of sleep my innear ear problem might heal. Well I ended up dependent upon it and detoxing in patient medically. What no one had come to the conclusion is, that I had at that time also been medically misdiagnosed as having high stomach acid just because of say I had reflux(but never mentioned burning). So I finally had when I was very low and finally off the ambia, a chiropractic student tell me my light headed ness and messed up muscles, etc and gerd might be from low stomach acid. So I'm now on gigantic doses of HCL so my LES closes properly and I regained the weight I was very very quickly losing back. But the D, well I think it's been a problem for 10 years. I fell in CA in a sunny state and my shoulders wouldn't heal right. It gave me whiplash, and my muscles hurt continually for 10 years, chiro after chiro, physical therapy, etc.... Even as recently as a week ago I didn't believe D could be my problem, but I now did up my D to a much higher dosage(knowing I have malabsorption issues but knowing taking more helps me sleep more solid). It's OR an the clouds have started, so my muscles crashed again. I went from 10K to 20K, and the pain went away.
Then I went to the naturopathic group and said, I HAVE TO KNOW if I'm messed up and it's the D! So I now went all the way up to 30K a day, and am waiting for my results. I'm sure this dosage won't hurt me for a couple of weeks, and will likely help much more in the long run. I'm totally sure that it will be super low. Oh, and yes, my ataxia comes and goes now, and I don't have auto panic attacks over it and as the fall came on, it started to come on and return more often. Cold air seems to aggrivate it, maybe I do have some inner ear swelling in cold air,but as I said, it was two types of dizzinesss I used to have when I was at my worst.
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Avatar_m_tn
This page explains what happended to us.
http://www.livestrong.com/article/289375-vitamin-d-deficiency-symptoms-vertigo/
.......and how it is from low calcium in the inner ear. FINALLY an explaination!
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Avatar_m_tn
Anyone else have ALS concerns?  I have increasing muscle weakness in legs and twitching in legs which began last week.  Should be getting better, not worse.  Now my anxiety has increased thinking I have ALS.  Anyone else have this concern??  I saw doc today to rule ALS out.
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1528307_tn?1336004154
Sorry it took so long for me to reply. I fell off the D3 Vit. bandwagon and tried natural sunlight. I failed miserably my Vit D went up a whole point. So it is back on gummy vits. 4,000IU QD. I just had a lab draw after completing my first two months on them. We shall see. I know what you mean about work. I'm dreading going in tonight. I'm a nurse as well and being on my feet all night
isn't fun. I hope everything has been well with you.
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1156694_tn?1265213626
Sorry I haven't been here for several months.  I started having a kidney issue and have not feeling well since they had to take me off the high rx Vitamin D.  They don't know if the kidney issue was due to being on the rx 50,000iu D2 for so long (Well over a year) or if it is my Diabetes (it however has been under amazing control).  It has taken awhile for me to get regulated on the OTC.  Talk about a painful adjustment.

Lauralight- Thanks for the article reference.  I might see about adding some calcium to my diet, to...in the form of a supplement.

Makani- I am glad that you have decided to restart the Vit. D3.  Let us know how your labs turn out.
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Avatar_m_tn
Hi everyone, it is comforting in some way to see others who share the same problems as mine.

I am 28. Have been doing night shift work since the last 5 years. About a year back i has problems while trying to fall asleep. I would feel a sudden jerk and wake up with a dry mouth and a racing heart. Went to a doctor did a few tests (blood, holter etc). Everything came back normal. I resumed working out and things seem to have gotten better.

Had been though a lot of stress in office lately and haven't been eating or drying well for a few months now. On oct 4th I started have the same problems. Only this this it was much worse.

I kept going to work and started working out. However, this time i felt very weak. Trying to go to sleep was hell. Palpitations, vibrations in my body, random muscle twitches, constant pain in the back of my head, BP - 150/95, Anxiety, Depression.

Got hospitalized. They did a battery of tests on me (blood, vitamin B, Auto Immune Disease, CT Scan, Kidney, Leaver etc) but everything came out normal.  

One test showed potassium levels were low. Hence started taking fruits daily. The Palpitations seemed to gave eased with this. BP kept fluctuating.

Doctors kept saying i was OK but I had this constant feeling of mal-ease. I eventually was discharged from the hospital without any Rx or diagnosis.

Finally - the vitamin D test came out showing my vitamin D level at 22 nmol/L. The doctor has put me on the following supplementation:

60,000 IU of Cholecalciferol (D3) once a week
250 IU of D3 daily

Its been just a week now but I must say this is helping a lot. I still have some weakness but the vibrations, anxiety, depression, constant mal-ease have greatly improved. I will keep you all posted.

Wish everyone a speedy recovery.
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681148_tn?1285160820
You should probably take at least 2,000 iu each day while taking the megadose once a week.  That is how much I was told to take.  You need to take sufficient amount to maintain and boost the vitamin D at the same time.  I still take 5,000 iu each day now that I'm no longer taking the megadoses.  This is because that is how much a lot of us need to take of the vitamin D3 just to maintain levels and keep them up there once we do get them up there.

Everyone:  Don't forget to take magnesium daily.  A lot of us are also deficient in magnesium.  I actually need to take at least 1500 mg each day.  One needs to take the equivalent of calcium at bed time.  So, magnesium citrate in the morning and calcium citrate at bed time.
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1942513_tn?1324153377
I am on the megadose of 50,000 I.U. of D2 and have been tempted to take an additional 2,000 of D3, I am a iitle reluctant to ask my GP bbecause he doesn't truly believe my symptoms (listed in another thread on this forum) is related to my vitamin D deficiency which was tested at 17. I just want to get better I am only on my third dose (18 days) and feel about the same.

Magnesium is another issue I am confused about I don't know if I am deficient and am a little reluctant to take it, is there a dosage that I could take that would not be harmful while I take the D.  
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