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Vitamin D deficiency

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helenab
helenab

I've been unwell for on and off now for almost a year. I remember phoning off sick a couple of times before feeling tired and 'achy'. I thought I was just being lazy and this was psychosomatic. Then I started getting really ill when I developed a sudden onset of neck/shoulder pain which is still an on going problem now although the pain has turned into discomfort/ache which I have learned to manage doing exercise and stretches. I also feel sensitivity on other parts of my body (like invisible bruises.For 6 months I was coping with my neck/shoulder problem (symptoms are crawling/tingling sensation in the arm, sensitivity to touch like its bruised and cold feeling and dull ache on my shoulder blade).

Then gradually I started developing 'flu like symptoms' without cough or cold but with tiredness/fatigue and dizzy headache which are intermittent throughout the day, until 2 weeks later I started getting throbbing ache in my legs and eventually I couldn't sit all day without getting restless legs and crawling/tingling sensation in my legs which caused weakness in my legs and worse when I'm going upstairs - and my knees keeps clicking. I went to my doctors who prescribed me with naproxen. And told me that I had something called Reactive Arthritis, which i thought was a misdiagnosis. Overall I though that it could be viral related

This time I've been off work for a week when I started to feel better after a week on naproxen. I came back to work for a week feeling like i thought I recovered. Then boom 2 weeks later gradually the flu like symptom came back with extreme tiredness / fatigue and I've been in bed since. I'm still achy all the time regardless. I have no energy to do anything, even showering is a struggle. Ive been in bed most of the time, sometimes I try to go out with my husband for a few hours but I come back home absolutely exhausted and the soreness/headache i get is a different level. Most of the time I feel like my body is inflamed.

So i decided to get a second opinion and i went to see another GP who referred me for a blood test. A few days later, my results came through and I have Vitamin D deficiency. Everything else they tested seem fine.I have a better outlook now though after the diagnosis, apparently it will take months for the treatment to take effect. I guess now they found something they will stop investigating further (which worries me a little bit) but i guess its process of elimination so treat one thing at a time. Would be great to hear from others who also has this deficiency and whether the treatment was effective?

13 likes, 304 replies

304 Replies

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  • debbi1956
    debbi1956 helenab

    Posted

    Helen. Reading this I thought that's me, oh my gosh this is me all over. Yes, I am taking a vitamin D prescription. I was at my very worst when I was diagnosed however I always have most of those issues you mentioned being on the 50,000 iu's of vitamin D. Therefore I feel I should mention to you my other diagnose which is Fibermyalogia. You need to have this checked out as well. Good luck to you and God Bless you. I pray you don't have this condition for it's really debilitating and not much they can do except give you pain pills.

  • gareth78925
    gareth78925 helenab

    Posted

    Hello I've just been reading your plight with vit d deficiency and it is exactly the same as I've been going through. Last year I had a misdiagnosis which nearly resulted in me having a hip replacement until coming back from the hospital I nearly passed out with exhaustion that's when I had a blood test and found out the deficiency. I was put on 50000 ous a week and now I'm on daily dosages of 1000 ius . They are working but I still get tired and depressed etc...

    I'm due to get another blood test to see if it's working but it seems like a long time to wait . I go to the gym to do a steady routine but absolutely shattered at the end and sometimes get twirly dots in the corner of my eyes like the start of a migraine . It was good to read what you have stated as it was like a reflection of my dilemma . I hope your treatment is going well and once again thanks for the input.

    Gareth

  • ashley45849
    ashley45849 helenab

    Posted

    Hello. Us too wondered if you had an update. I had symptoms of dizziness headaches head pressure neck pain weakness tired fatigue basically.  I had sinus surgery 6 weeks ago thinking it would correct it. And I was worse. Then I found that my top teeth roots all but front 6 were infected/abscessed so I had them removed 3 weeks ago but a week before I had my teeth pulled I found out that I had a low vitamin D level. T should be 30 and mine is 18.1. So the dr gave me 50,000 it per week. I will take my 5th weekly dose tomorrow and I still don’t feel better. I have had every blood test mri X-ray and ctscan done. I just want to know how long it will take to start feel normal. When I finished my last antibiotic I started feeling good and that lasted a week. Now I’m back to feeling lightheaded/dizzy I still have headache so tired I can’t get out of bed to go to work some days. I have 2 kids and a husband that I feel like I’m neglecting. And I have horrible anxiety now. Does this get better? Do I just need more time to heal? And raise my levels? I hate the dizziness and anxiety and becoming depressed from not feeling good. I also get tingling in legs sometimes. And idk about the pressure and headache. Maybe the sinuses need more time. Dr said they weee Good. I also had high bp which is getting better and I get heart palpataions. I just want to feel normal. I’m 35 years old! Has anyone had success with low vitamin d and how long did it take? I don’t want to lose my job and I just can’t get outta bed! 
    • gareth78925
      gareth78925 ashley45849

      Posted

      Hi I've finished taking 50000 iu a week and now taking daily supplements of around 1000-2000 iu s a day . My doctor says I have to wait a year roughly to have another blood test to see if it's working. My bone pain has considerably improved so I don't have debilitating chronic pain . I have to work on the lethargicness side of things but I just try to look at it as a work in progress. This sort of ailment isn't something like switching alight on and off you just have to be patient. I've looked at my diet and daily routine and tried to improve it but everyone's different , maybe that might help ? you may find that you stumble on something inadvertently which could change your life around.

    • Jaybelle
      Jaybelle gareth78925

      Posted

      That's weird - why would you have to wait a YEAR? Not a doctor, but can't see any medical reason for that!! I insisted on a test after my initial high dose period was over to see where we were at. Can't recall the numbers now, but it was in the lower acceptable range, and I wanted it in the higher acceptable range, so carried on with about 35kIU/wk (5k/day) for next several months. I didn't even 'turn the corner' pain/fatigue-wise until 7 months of high dose therapy, and was able to work part time and feel I was almost my old self by 14 mts down the line. Rebuilding lost muscle mass was probably the hardest, by the way, and I would recommend strength training for that. Did feel like climbing up a greased glass mountain! 

      However, original point: I can't see why you would have to wait a year when serum levels of 25(OH)D3 (the major circulating form of vit D, and the subject of a blood test) rise relatively rapidly; a test 12 months down the line will only tell you whether you have maintained a decent level, not what your level is now, which is what you want to know, surely...

      When it comes to weird things doctors have said about Vit D deficiency/osteomalacia, we have seen it all on this forum. To be fair, this is because it was a completely neglected area of GP education until relatively recently when it was realised that deficiency was rampant in the northern hemisphere, and doctors' education has been patchy and/or absent. NICE's own guidelines are woolly at best, and this is as far as they are prepared to go: 

      "There is consensus that levels below 25nmol/L (10ng/ml) qualify as ‘deficient’,2, 3 but beyond this there is currently no standard definition of ‘optimal’ 25(OH)D levels.4 Some sources suggest that levels above 50nmol/L (30ng/ml) are ‘sufficient’, while 70–80nmol/L (28-32ng/ml) is ‘optimal’."

      So, I'll leave you with that to chew on. I followed the guidelines of Professor Michael Hollick, who has spent his professional life researching vitamin D metabolism and seemed to be the only credible and consistent medical voice around when I was ill. 

      All best wishes. Hope you get your blood test soon and see where you're at!

    • ashley45849
      ashley45849 gareth78925

      Posted

      I’m shocked that your dr is making you wait a year. Usually every 3 months at least. I know a lady that was doing better and her dr dropped her to 800iu a day as a maintenance dose and ended up right back where she started so you want to make sure your levels don’t drop too low. I would ask for another blood test. Most drs don’t know enough about this. My dr had me on a weekly dose of D2 which didn’t help I needed daily dose of D3. Also said my symptoms weren’t from the vitamins d deficiency but they are. I had some issues with the D3 but I finally found a brand that’s all natural and I tolerate it better. Also, have they checked your B12? Best of luck and so happy that your are seeing improvements. Try to get out in that sun when you can! And in winter remember we may need a higher dose than in the summer. Just listen to your body. You might need to go up now. I’m no dr. Just my opinion. I know I never want to go thru this again. It’s been the worst 6 months of my life. Keep in touch and let me know how your doing! 
  • Beautifulmyway
    Beautifulmyway helenab

    Posted

    Helenab, any update on your condition?? Ashley, and others I feel the SAME! my vitamin d level was 12 about a year ago and I am on a concentrated Vit D pill of 50,000 units every week. I do not feel better. In fact, I feel like lately I have been getting worse. My symptoms mirror MS or peripheral neuropathy. I could also have thyroid problems (I believe) but my thyroid was tested years ago and they said my thyroid was literally, "beautiful", and that I have a, "textbook thyroid." I don't care what I have I just want to know WHAT I possibly have. I honestly believe its really an autoimmune disorder as stated above. I have been diagnosed with Raynauds phenomenon as well. I suffer from Degenerative Disc Disease and suffer from excruciating pain from that alone. I have IBS, I suffer from depression, anxiety and severe fatigue. My pain is awful but the worst symptom that interrupts everything is the the chronic fatigue. I hate it. I'm tired all day everyday so much so I fall asleep behind the wheel! Lately I have been experiencing pins and needles and numbness, swelling, and lack of motor function in my hands and fingers. I don't know what to do. I have always had those feelings in my legs and feet but just chalked it up to the disc displacement issues. Now I may have cervical issues because of the discs in my upper back or neck. I just feel its all the symptoms of a much larger issue. I am in pain management and finally had a dr listen to me last week and she's sending me to PT and then with that hoop to jump through I will be able to be sent for an MRI for the higher back region to see what's going on. My hands are always hot and itchy as well. They get quite red too but I was told that's because of the Raynauds. Anyone have any advice or recommendations? I'm only 33 years old and I have such a limited life because of these issues and I just want to get better. Just better enough to function and live a meaningful life! Also one more thing they recently found out I have a lot of food intolerance as well. I can't have gluten, corn, dairy, eggs, and soy bothers me as well just not as bad as the previous ones. I eat fresh fruit and vegtables mainly. It's extremely hard to sustain as it is ridiculously expensive to eat this way and not to mention in a sea of normal people eating whatever they want the temptation is unrelenting and so hard to say no but if I screw up it makes me so sick. Sometimes its hard to remember that and I shoot myself in the foot. Any advice on that would be incredible as well. Thank you for your time.

    • ashley45849
      ashley45849 Beautifulmyway

      Posted

      Hang in there hun. Have your dr do blood work. A lot of the vitamin d symptoms mirror a lot of things. I’m hoping this is the case for you. I hust had my bloodwork done this morning so I will update when I get results. I wish you the best of luck. I have seen small improvements since I started taking D3 daily. Maybe try that? The Facebook group has really been helpful. Keep us updated. 
  • priya456
    priya456 helenab

    Posted

    Vitamin D is essential for strong bones, because it helps the body use calcium from the diet. Symptoms of bone pain and muscle weakness can mean you have a vitamin D deficiency. However, for many people, the symptoms are subtle. Yet, even without symptoms, too little vitamin D can pose health risks.
  • aakash90713
    aakash90713 helenab

    Posted

    Hi ALL,

    Recently i did my full body health check up and  blood test and found that my D levels are very low.Rest everything was normal.My vitamin D level  is 5.61ng/ml , calcium level is normal , and B12- 414 pg/ml(this is considered as normal in my country).My symptoms are excessive fatigue,lethargy,excessive mind fog,heart pumping fastly specially after taking meal,breathlessness,irritation, hands trembling,anxiety and diziness. My doctor has given me 60K IU Vitamin D3 tablets for 8 weeks/1. I have taken 3 of them, but not found any difference at all. I am also taking Magnesium as it helps my heart .When will i feel the difference?? I have also heard that one needs to take vitamin K2 MK7 for transporting the calcium to right spot.

    Do i need to take k2 also.??

    • ashley45849
      ashley45849 aakash90713

      Posted

      I don’t take cofactors but Facebook has a few groups for vitamin d deficiency. Do a search. They have all the recommendations there. Good luck hun. I went 5 months before I found out mine was low and I’m really struggling. 
    • dee55726
      dee55726 aakash90713

      Posted

      Hi, i found out 5 weeks ago, that i was Vit D deficent, through routine bloods. GP put me on colecalferol. It does say, not to be taken at the same time as antacids. Over the past weeks, instead of felling better, i have got worse. Muscle fatique, tiredness, and an awful sensation that my blood is rushing to my chest frOm my feet,  plus feeling as if im going to faint. Had blood work retested last week, and they've found that within 3 weeks, my Hb count has dropped from 14 to 8.4, plus folic is very low. Still feeling dreadful & as yet, no improvements in symptons. Being retested this week, so i'm hoping they are all on the up. GP say's i have to continue for 3 mths with meds and if no improvement on levels, this time, then full investigations will need to be done. He says i've definatley had a bleed.

      If i were you, i would request another lot of bloods, just to make sure, there's nothing else going in.

      Dee

  • aya48093
    aya48093 helenab

    Posted

    Helenab,

    I would be very happy to hear how your story continued. I have quite the same symptoms and can’t find the way out. 

    If I don’t take vitamin d I am tired, can’t sleep, full of pain in joints. But if I take supplement I have nausea, upset stomach no apetite ...

    I wonder if maybe my reason can be in Lansoprazole that i am taking for acid reflux or celiac disease. 

    Did anyone connected low vitamin d witg gluten intolerance?

    aya

  • amy36863
    amy36863 helenab

    Posted

    Vitamin D is necessary for proper growth of our bones. Ever one in 5 person is deficient of the same.  So one must include fish, mushrooms, meat and other dairy products in their diet.

     

    • ptolemy
      ptolemy amy36863

      Posted

      Interestingly enough only about 20% of vit D is got from our food. The important thing is sunshine! 
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