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recovery after vitamin D deficiency User Group
Another Newbie, so glad to stumble across this group!
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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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Another Newbie, so glad to stumble across this group!

It is such a comfort to find this group. My story is so similar to many of those posted here. It is great to finally have an answer to the YEARS of suffering and being told that it is "all in my head". I have spent thousands of dollars having every test doctors could throw at me only to be told every time, your results are normal. Now here's an anti-depressant, off with you. I have had blood tests (thyroid, lymes, autoimmune disorders, arthritis, etc.), been to multiple specialists, had balance/ear tests, wore a holter monitor, had x-rays and a cat scan and more that I am probably forgetting. My husband was positive I was a hypochondriac.

My symptoms were:

dizziness
anxiety/panic attacks
muscle pain/weakness  especially in legs, have nearly fallen a couple of times when legs just seemed to give out, I often feel like I have run a marathon or something when in reality I have no energy to even do the dishes
bone pain (extremely bad, interferes with sleep)
fatigue
insomnia
ear pain (with no infections)
nausea (like morning sickness but not pregnant)
shakiness
shortness of breath
asthma (diagnosed a year ago but getting progressively worse)
brain fog
brain zaps (electrical zap feeling in my head/face)
sinus pain/pressure
mixing up words (trying to say peanut butter, said toothpaste instead  trying to say candy cane, said snowflake, etc.)
flashes of light in my vision
tingling/pins and needles sensation in feet/arms
breast pain
Chest pain
Racing heart

I had pretty much resigned myself to the fact that we would never know why I felt so bad and that I would just have to live with it (or die from it as I was beginning to fear). Just before Christmas, my counselor urged me to try another doctor that she had heard great things about. I was skeptical because I felt like I would just be paying another doctor to tell me there was nothing wrong with me. The doctor was awesome, asked me more questions than any other doctors combined. I was there for over two hours. She noticed that I had a level of overall muscle weakness which concerned me. I left there hopeful but still had to wait for two weeks for my results. Fifteen days ago I was told that my Vitamin D levels were the lowest the doctors at my clinic had ever seen. My level was 5. I asked my doctor what the symptoms were and she told me that the weak muscles and muscle pain as well as bone pain were caused by low D. I started to cry from relief.

At the time, I had no idea low D levels could cause all the symptoms they do, but I am amazed and hopeful for a full recover. It has only been a couple of weeks and I am still miserable. I hurt all over still. I am still panicky, but the insomnia has gone away. I still have overwhelming fatigue, but at least now I can actually fall asleep. I went from years of tossing and turning until 3 AM every day to falling asleep at 8 PM. Heck, last night I was falling asleep while my husband and I tried to watch a movie. I decided to ride my exercise bike so I could stay up to watch the end of the movie and I was falling asleep peddling!

I am a bit discouraged at how long the recovery takes. My doctor hopes that three months of taking 5000 iu/day OTC D3 supplements as well as calcium and fish oil will get my levels to 20 at my three month followup. It does help to read posts from those of you who have been there, done that and are now able to post that you are recovered.

Tonya
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10 Comments
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Avatar_f_tn
Tonya,

Sorry to hear that you have been suffering for so long before you dound out what was wrong wtih you. Luckily for me, i had been having the symptoms for only 3 months before i was diagnosed but that was because i asked to be tested for vitamin d deficiency. I was also as low as you at a 6 ng/ml so mine was also pretty severe.
I am not sure why your doctor has put you only on 5000ius/day if you are so low. Most doctors would put u on a prescription supplemetn of 50,000iu/week at least if not twice a week. Getting your levels to only 20 is going to do nothing for your pain. You have be higher - atleast 40 to 60 to start feeling a LITTLE better. After i was diagnosed and put on 50,000iu/week, i was retested after 2 months and my levels had gone up to 64 but i was still experiencing most of the symptoms. I have now finished my prescription supplements and now on OTC supplements of 4000iu/day to maintain my levels. I have heard that even after getting to normal levels it can take several months for complete resolution of symptoms. I hate to be the bearer of bad news but it will be awhile before you really start feeling better and i think you should definitely speak to your doctor about increasing your dosage.
I have also been having breast pain as one of my symptoms and it is one that scares me a lot. What kind of breast pain do you get? Is it from inside the breast itself (liek from the tissue) or outsides - near the armpit, sides etc.? I get it all over. I have gone to multiple drs about and gotten mammos and US done but they keep telling me nothing to be concerned about. I hope its the vitamin d def. which is causing it and nothing else.
Hope i was able to share some info with you and help u. I know how frustating it is when nobody believes you about how bad the pain can get. Hang in there! I am now starting to feel a LITTLE better now after 3 months of supplementing but i have good and bad days.
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Avatar_f_tn
The breast pain that I get is like someone is stabbing you. Then other times is it is like premenstrual pain only ALL the time. It comes and goes. Re-reading my post I realized I left off being cold all the time. I am freezing, even in the summer. I think this must be from low d as well (at least I hope so because it bothers me, sometimes more than the all over pain)

I think I will ask my Dr. about taking a higher dose, I definitely want this over sooner rather than later! I am having a rough week and am not coping well even though I try to tell myself what the symptoms are from my mind takes over and convinces me it HAS to be something worse!
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Avatar_f_tn
We share many of the same symptoms only I started at a higher level -- 20. It takes awhile to recover but hang in there sick with it and you will. You might want to "fool around" with the dosage level of D3 gel caps you're taking. Some people tolerate higher doses than others. I'm one of the unfortunate ones in that I cannot go higher than 4000 IUs D3 a day. One my D levels got into the 30s my symptoms started to resolve. Feel better....and, keep us posted.
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Avatar_m_tn
I too would echo that you need more D3 if you can tolerate.  Im now taking 10k OTC per day.  I was at 31ng a few weeks ago.  I want to get over 50ng.  You may also want your thyroid checked.  Good luck!
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Avatar_f_tn
Hello tmf315! I too went through these exact same things that you are experiencing.  I was feeling horrible for about 6 months before I decided to take action and finally found the right doc who dx'd me with low vitamin d level of 8!! They gave me 50,000 iu to take once a week.  And now I've followed up with an endocronologist who has increased by vit d dosage to three times a week and after further blood testing has me taking magnesium once a week and calcium four times a day (assume those levels were very low also).  So I would check on that dosage just to see what the doc says about it.  Now I have read on other posts that the prescribed vit d and the vit d3 over the counter is different so that may be why your dosage is low.  I'm actually trying to decide on taking the otc vit d3 because I heard for some it works better.  So I purchased a bottle just to try it.  At this point I will try anything (safe and legal) to feel better. I've been taking the vitamin D since about Mid-December 2011, however my dosage was increased at the beginning of this month that was also when the calcium and magnesium was added.  So some of my symptoms have subsided but not all. I have read that it can take a while to heal so i'm just ready to feel better!  But by reading these forums and getting advice and encouragement from the different people here really helps alot.  We can all get through this deficiency together.  As I get info I will keep you posted and you keep me posted as well!
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Avatar_f_tn
By the way my name is "Tonia" also :)
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Avatar_m_tn
You are taking 150k/week of Vit D?  How much calcium and magnesium do you take per day?  Tx
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Avatar_f_tn
Yes I take calcium (630mg) four times a day and magnesium (250mg) once a day! Seems a bit much right??
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Avatar_m_tn
wow, so you are taking over 2500mg of calcium/day?  You endo has you doing this?  Maybe I need to increase my calcium?  Im taking 1000mg cal/day and 500 mag/day.
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Avatar_f_tn
Yes this is what he recommended.  He increased my dosage when I called to complain about tingling and pressure in my head.  And for the most part the symptoms have subsided.  I still have other weird symptoms which I've been told is part of the healing process.  But yes this is what he recommended.
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