Discussions By Condition: I cannot get a diagnosis.

Why do i still having vitamin d deficiency symptoms after treatment?

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: Anonymous
  • March 5, 2010
  • 05:30 PM

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 ***l 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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9 Replies:

  • I am a 45 year old female with symptoms very similar to yours for about 3-4 months and was chalking it up to my fibromyalgia until I started having the same "this must be what it feels like to be dying" feelings, so I went to my GP who did bloodwork. Everything else was within normal parameters except for my Vitamin D level which is at 10 ng/L.He has me on 50,000 IU of Vitamin D once a week plus 2,000 IU daily. I am on this for 8 weeks then I'm to be retested. I was glad to get a diagnosis and upon reading more about Vitamin D deficiency, I saw that my symptoms fit it almost exactly. However, I only a week into treatment and still feeling extreme fatigue, weakness and that "body is shutting down" stuff. Mentally, I am wanting to be up and doing and going; but physically, my body is just not ready for that.Eager to hear of others' experiences with Vitamin D deficiency and wish for us all to have better health ahead.
    Anonymous 42789 Replies Flag this Response
  • I am a 45 year old female with symptoms very similar to yours for about 3-4 months and was chalking it up to my fibromyalgia until I started having the same "this must be what it feels like to be dying" feelings, so I went to my GP who did bloodwork. Everything else was within normal parameters except for my Vitamin D level which is at 10 ng/L.He has me on 50,000 IU of Vitamin D once a week plus 2,000 IU daily. I am on this for 8 weeks then I'm to be retested. I was glad to get a diagnosis and upon reading more about Vitamin D deficiency, I saw that my symptoms fit it almost exactly. However, I only a week into treatment and still feeling extreme fatigue, weakness and that "body is shutting down" stuff. Mentally, I am wanting to be up and doing and going; but physically, my body is just not ready for that.Eager to hear of others' experiences with Vitamin D deficiency and wish for us all to have better health ahead.LadiesI am 60 and counting. was just diagnosed w/Vit. d3 deficiency in July 2010. Have been taking approx. 5700 IU of D3 per day. While I don't feel great yet, I have noticed the tingling, cramping, dizziness and palpitations have decreased. Hopefully in time, we will all feel better.God bless you.
    Anonymous 42789 Replies
    • August 12, 2010
    • 04:39 PM
    • 0
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  • LadiesI am 60 and counting. was just diagnosed w/Vit. d3 deficiency in July 2010. Have been taking approx. 5700 IU of D3 per day. While I don't feel great yet, I have noticed the tingling, cramping, dizziness and palpitations have decreased. Hopefully in time, we will all feel better.God bless you. I too had the same symptoms. Palpitations, extreme fatigue, almost unbearable joint pain, stumbling, falling, muscle weakness, headaches, etc etc etc. I never would have thought that Vit D. was the culprit. After complaining of the severe pain in my pelvic bones and hips (when I'd sit for any length of time it was so bad I could barely move and almost fall when I'd try to take a step). I am 53. I have Ehlers Danlos so just figured I was feeling the effects of age, arthritis, etc with the EDS but my doctor tested me (FINALLY) for Vit D Deficiency when she did the math and realized I'd been lactose intolerant since early adulthood AND have an allergy to sunlight (break out in hives) so have avoided being in sunlight for 25 years now....it caught up. My Vit D level was at 13 when it was discovered. I too was put on the mega 50k x 2 per week dosage and it has gotten better over the past several months. But you have to figure you didn't get that low overnight...it was probably building for a few years, so while they can pump you up with synthetic vitamins it's gonna take a long time for it to get back into your very cells, tissue and bones before you start really feeling better. It's been nearly a year for me now. I'm in much less pain, much less muscle weakness, palps are gone and I am not exhausted all the time. Give it time, if that was your diagnosis, keep taking the vitamin as prescribed and dont' stop....it's amazing what the lack of that "sunshine" vitamin can do to us.;)
    ayleeann 6 Replies
    • August 13, 2010
    • 10:35 PM
    • 0
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  • I totally know how you feel. I am a 29 year old female and began feeling symptoms 8/09. I had a lot of pain in my hands and fingers. I was tested for everything under the sun of course, and with every test result being negative it was bittersweet. It is so hard not knowing. My pain was very migratory and I had pain in my outer thighs, neck, back, headaches, tingling (especially hands and feet), and fatigue. Most doctors attributed it to stress and anxiety-others thought maybe fibro. Finally I had a doctor test my vit. D-which was a 14. I was diagnosed in June 2010 and took 50,000 iu's a week plus 2,000 iu's per day for eight weeks. I feel slightly better but still have pain in my bones and a lot in my hands. The doctor told me that is was a great sign I had some improvement and to keep taking 2,000 iu's per day. He said eventually I should improve-my level was a 64 at this time. It is so hard-I am getting married in 2 months and would like to run and do all these things to get ready, and I can barely make it a mile. I know how you feel. Keep me posted on how you are doing. 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 ***l 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
    Anonymous 42789 Replies
    • August 18, 2010
    • 03:53 AM
    • 0
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  • Well, you all, like the rest of the globe are informed very very wrong about the "vitamin D".This substance is a hormone and not a vitamin. Taking artificial hormone D is not good at all and it will destroy the calcium metabolism, thus creating a lot of problems like bone affections, decalcification and ionic calcium disturbances.The deficiency of what the doctors are measuring in the blood regarding this hormone can only be removed by sun baths, avoiding sun glasses to let some ultaviolet light get into the eyes (do you know any animals requiring sun glasses) and by using a homeopathic treatment.Vitamin D intake is only a damage to the health (funny enough that you can find vitamine D only in the liver of certain fish in bigger quantities)
    Anonymous 42789 Replies
    • August 28, 2010
    • 10:18 PM
    • 0
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  • I stumbled across this because I was just diagnosed with vitamin d defiecency. However, my levels are at 28.2 and I have all the symptoms that seem to be happening to others with levels alot lower than mine. I'm a 22 year old female and have been suffering from migraines and anxiety since 2008. The migraines progressively got more frequent, hence enhancing the anxiety. I was also ALWAYS tired, so they tested me for hypothyroidism which came back negative. In 2009, I started getting heart palpitations and asthma, which I never suffered from before. This is when I started worrying that something was much more wrong than anyone could figure out. I continued to have these symptoms, and started getting sick about every other month. Stomach viruses, flu, and sinus infections. I was back and forth from the doctor, with my anxiety building, because each time she would just tell me to take something o er the counter. This past August I had the worst migraine I had in my life. My boyfriend picked me up from work (I'm a hair stylist) and I slept until the next day. I woke up with flu like symptoms, aches and pains, fatigue, etc. I was due to go on vacation the week after and didn't want to be bothered by medicine, so I let it run it's course. Only, it didn't. On vacation, we rode everywhere on bikes. My knees KILLED me. It almost felt as though they were separating at the joints. I had a few anxiety attacks because like many of you thought, I thought I was slowly dying. I went to the doctors when I got back and by then it had started in my tricep muscles in my right arm. I told her everything that was happening and she passed it off as anxiety. She asked me if I wanted to go on antianxiety Medicine and I said no because I actually had anxiety over taking the medicine because I knew something was wrong. A few days later, I was home with my boyfriend and started getting short of breath. My arms went numb and my hands and finger hurt. I freaked out and called the doctor, went back that day, and she ended up prescribing a medicine to take for panic attacks and told me the numbing will go away. It persisted. The pains then started in my ankles and feet, as well as my neck, ribs and hips. I got sick yet again. By now it was October, so I went back. She checked all my papers because I had been there 6 times in that month and a half. She went all the way back to 2008, when my migraines started. She checked my joints by bending and asking if it hurt, and she continued to ask me questions. Along with these symptoms, I answered yes to hair loss, mouth ulcers, skin rashes, vision problems, and sweating. She asked if exercise bothered me, I told her as an avid exerciser, hadn't done it in months because it hurt so bad. She ordered a blood test testing my Blood levels, mono, RA, a virus, lyme, metobolic stuff, and "just to see" vitamin d. A few days later I got the call at work. "Good news! It's just vitamin.". It was a relief to know, and I do notice a slight difference for it's only been a few weeks. It's great to read things like this to see that I am normal and not crazy for thinking different things. Nice to know there are others going through this. I've been telling everyone about it and advising them to make sure their vitamin levels are sufficient because I would not wish this on ANYONE.Sorry so long, but I felt the need to tell my story.
    Anonymous 42789 Replies
    • November 7, 2010
    • 05:17 PM
    • 0
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  • I too have had alot of problems with my vitamin D levels. It all started a few years ago with me, and it was subtle, first in my feet, when I would step down off the bed or out of the car, I would notice they would hurt, then the pain in my feet slowly became worse, no this wasn't muscle pain or nerve pain, this was deep in the bone pain. then the problems started moving into the muscles of my legs, they would often feel heavy, weakened and had a deep burn in the muscles(the kid of deep burn you feel after overworking your muscles exercising.) I noticed my arms later would have the same muscle problems, and it was very difficult and painful to even brush my hair, and folding laundry or carrying groceries wasn't happening either. I went to numerous doctors all who looked at me as if I was crazy. I had to hear over and over again how oh so young i was and that I was too young to have all this wrong with me, (they looked at me like It was all in my head) all the tests came back "normal" or what they say "pretty normal". what exactly does "pretty normal " look like? I began noticing my memory began to suffer as well, I couldn't remember something that happened just a couple days before, or I would make appointments and forget about them. I also was having sharp shooting pains in the bones of my arms/legs on and off. I did alot of research online about anything related to my symptoms and I narrowed it down to two things, I went to my doctor who was stumped at what was wrong with me and right when he was going to send me to a specialist I told him about these two things, one being vitamin D. He agreed to test me just to"double check' that he didn't miss anything and gave me the lab papers and a referal to the specialist, so on my way I went for more blood-work, and made the appointment with the specialist anyhow, A day or two later I recieved a note on my medical chart online that said " your vitamin D level is extremely low, I sent over a script to your pharmacy". No phone call? just the email, So I RAN to pick up the capsules and started taking them, at first it seemed as if my problems were actualy getting worse with the capsules, the pain increased. but within three months I was feeling 75% better than before. my problems went away until the following year, and they returned in the spring, started with the same symptoms, same pains, So I got blood-work again and vola! again it is super low. So back on the medicine again, I am now on vicodin, A form of muscle relaxant, and other treatments to ease the pain, another 10 weeks of fmla down and I feel aweful, it hurts to take a few steps. but now My doctors and I know I am one of the people who will need this vitamin therapy weekly lifelong. I cannot wait to start feeling better again. Another thing I'd like to point out, many doctors don't even think of checking the vitamin D level, they will misdiagnose with fibro, chronic fatigue and other such things, but I would ask to have your levels checked. If I never looked into this and had my doctor check, I would have been misdiagnosed with several things by now and still have not had any relief! there are probably many people out there right now SUFFERING needlessly with this condition. I hope everyone feels better soon..
    sunshinegrl 1 Replies
    • October 4, 2013
    • 02:20 AM
    • 0
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  • Hello I really need some help and suggestions from everyone. I 30 and i have been suffering with all the same symptomsas everyone. My levels were as low as 12 last feb'15. I have visited hand physiotherapy for months for my hand pain n numbness and series of doctors (neuro,endo,rheumo,obgyn) while taking vit d dose simultaneously. Dosage was increased from 1000iu for initial four months to 50000iu twice a week. Now my levels are 40 and I am still getting same symptoms. Only difference being my symptoms are cyclic. For two months am all fine like running 6-8mi and two mnths bed ridden for 14-16hrs due to fatigue. I have gone through multiple blood tests and all other levels look normal. I was feeling if they are above 30 i should not be getting these symptoms. I am wondering if either of you have gone through this, after taking medication also feeling similar symptoms. I am tired of giving excuses at work.
    Anonymous 1 Replies Flag this Response
  • Do you have constipation or IBS, bloating and gas? Do you suffer from GERD/acid reflux? Take antacids? I was in the same situation, low vitamin D, bone pains, dizziness, anxiety, the list goes on. It is a malabsorption problem causes by low stomach acid. Maybe this can help.
    Anonymous 1 Replies Flag this Response
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