Vitamin d deficiency : I can't seem to... - Pernicious Anaemi...

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Vitamin d deficiency


I can't seem to find any one on here with a vitamin d deficiency. For the past 3 months I have had horrible symptoms. It all started out with bad headaches, lightheadedness, dizziness, & extremely weak to the point where my body just wanted to give out & or faint. Pressure headaches. Ringing in the ears. & felt dazed. I felt tingly, numbness in my legs & arms followed by a pin & needle sensation. My arms would then get clammy & cold. I would have hot & cold flashes followed by sweating & then chills. I would get chest pains. Couldn't eat. & had uncontrollable crying episodes that lasted hours. I now hear a cracking noise in my chest, followed by heart palpitations. I feel breathless, like I'm not getting enough air intake/oxygen. I'm shaky, & get very trembly. I feel sick to my stomach. I feel like I have the flu, but worse. I feel like I'm dying. I've been in countless times & doctors kept telling me it was my anxiety & depression that was doing this to me. This has been on going for 3 months everyday. I have lived with anxiety & depression for 16 years this isn't the issue. I finally had my vitamin d checked & it was extremely low (10). I was started on 50,000units once a week of vitamin d. I'm on my second dose, second week of taking it, I now have all the same symptoms along with horrible cramp like feelings all over my body. I had a very bad a attack last night with the uncontrollable crying, & I felt like I wanted to pass out, & with the chest pains. My question is, has anyone felt this way with a vitamin d deficiency. & has anyone had a number like mine. I'm tired of feeling like I'm crazy, tired of feeling like this. I just want to know that I'm not alone.

34 Replies

Hi Bluecb. I was just about to go back to bed, it's 6.05 a.m and the 4th time I have had to get up ( it's a nightly occurrence these days ) due to experiencing many ( almost all of the symptoms you are....the chest pains, tingling, breathlessness, blinding and constant headaches, as well as blurred vision, tinnitus, ( now keep me does worrying about the dementia type symptoms ( I now have white noise in my head as well too ) experiencing...and I DO mean dementia type... it's gotten really bad this last 6 weeks or so.... I am 46, it keeps me awake because I worry about my children and the effect of all this on them. I have a confirmed Vitamin D deficiency as well as a Folate deficiency. I am, after being bedridden for 7 months , almost sectioned, slurring my words, unable to walk straight, losing two weeks of my life, having a car accident, being breathalysed, shouted at and having my motorcycle seized by the doctor !!!!! ( Yes seriously ) and fighting from the bottom of the pit of undiagnosed, negligent,dismissive despair I am in etc, etc, etc....was finally given B12 injections ( you would have thought I was asking for illicit drugs....not a water soluble vitamin). !! I haven't experienced these symptoms as a direct result of taking Vitamin D....BUT I wanted you to know that you are NOT alone. x Please, please go back to your fact personally, with the symptoms you are describing... maybe you should go to A & E. !?!? Literally JUST to be on the safe side. You must be worried...( I am ) so if nothing else, they will hopefully be able to put your mind at rest that it's not anything more serious and maybe find out exactly what is going on for you... 🙂

Bluecb in reply to DeeDee3770

I've been to 2 different er' in our area countless times in the past month alone. All they do is check my vitals which read good (I guess)... give me a shot for anxiety which they believe is the problem. & I've begged them that it is not the issue. They told me to go to mental health which I have, a doctor from mental health ruled out anxiety & depression as being the problem. So she ran tests, those came back good & she tested for lupus, & another for any inflammatories.


When i had my vita D tested it was a 6. Yes you did read it correctly. Six. Ive had a ton of issues. Ive had to neck surgeries. Becuz my arms would feel as if they were asleep. If i simply turn my head it feels and sounds like two pieces of sand paper rubbing together. After surgery it was gone but only temporary. My arms would go numb. And all this is going on again. On my left hand part of it is numb. I could literally draw a line on my hand showing feeling and no feeling. My back is an even worse story. I have degenerated disc disease, spinal stenosis, spondylitis, several herniated discs. In my sciatic area i have a painful pinched nerve. Its the nerve that goes down my right leg. It gets so painful when i walk that it shoots a painful jolt up my leg all the way from my foot. I cant stand for any amount of time. Sometimes its too painful to sit in a chair. Im having to lay in bed for relief on alot of days. ( but disability claims they "think" i am able to sit for a work day job. Thats another story for another day. ) i am obese which doesnt help my situation at all but yet it gets way to painful quickly when i attempt to go walking etc. i am working on that as well as i am able to. Anyways my point i was making, i guess is that symptom wise- i havent noticed any other than all the painful stuff from my bones.

Marz in reply to Hidden

Hi Hidden What dose of VitD are you on / Did you have loading doses ?

Hidden in reply to Hidden

They told me to take 5000 but i started with ten. The bad thing is now i forget to take it more times than i actually do take it. You have to take it with food and I honestly forget about it. I have no doubt its low again.

I also am ana positive but they arent even looking at why. It gets so frustrating having so many things going on at once 😔

Hi bluecb

I have, and had all the symptoms you have described, 4 years still take vitamin d, then once a week, now monthly 🙈 However there probably the underlining reason such as an hormonal imbalance. I can't move a limb without my body creaking 😳 Have a prolapse disc on my back, digestion that crazy 😜 etc etc etc ! I have tried it all so please do not feel alone! I hate my life on the best days, I am only 30 and this has gone on since I was 24 so yeah, all round it has been 💩💩 lost a lot of hair that I have to shave it! YOU ARE NOT ALONE, you are in my prayers 🙌🏾🙏🏾❤️️👌🏾

blondie2505 in reply to Stormx

Have you tried gluten free if made me feel a lot better.

clivevsmith in reply to Stormx

Please google Amy Myers and her book The Autoimmune Solution. I hope her 'way' will bring the health you are seeking. Takes 30 days to start with and makes a lot of sense. Good luck to you all.

Hidden in reply to clivevsmith

Oh this is something i may need to read as i am ANA positive, "they're " not even looking into why 😞

Marz in reply to Stormx

Have you had a FULL Thyroid check ?

Bluecb in reply to Marz

They have checked my thyroid at the er a few times, & when at my doctor appointments. All I was told was that it was good. I'm not sure how it's checked, I have done some research & learned the doctors don't always check the levels of it, not to sure on that.

Marz in reply to Bluecb

They often check just the TSH which does not tell you enough. The tests you need for a proper diagnosis are - TSH - FT4 - FT3 and the thyroid anti-bodies - Anti TPO & Anti Tg.

All about saving dosh I am afraid. Private home testing is available through Blue Horizon. Very popular on Thyroid UK and as a result people find their health ....

Marz in reply to Marz

Oops ! - just realised you are in the US. Not sure you have Blue Horizon there .....

Vit D deficiency is so common in UK, I'd be surprised if there were many on here that aren't.

Have you tried to live Grain Free?

the symptoms you describe sound mire like vitamin b12 deficiency. Have you bet tested? If not then I would recommend you get tested.

Bluecb in reply to julesr21

The first month into this hell I looked up all kinds of things, did freak myself out but had to rule out a lot of things because normally I am healthy. I came across a vitamin b12 deficiency. I had brought it up to my doctor at the time, but the lab only tested my vitamin d. So At the moment I don't know if my b12 is low. When I go in on Tuesday for yet another doctor appointment i will ask to have them test my b12 & vitamin d again.

I have recently been diagnosed as vitamin D deficient. My level is apparently 0.20 😳

I have a most of the symptoms you describe too, have been prescribed 20,000 units once a week for twelve weeks and then they will test it again.

I do feel unwell most of the time but I can't help feeling that the result must be wrong, if it is that low surely I would be really really unwell?

Bluecb in reply to Nattii

people experience different symptoms it just depends on our body's is what I read. I'm only 26 & I feel like I'm an 80 year old women. My body feels like it's deteriorating. I was active, I have 4 kids & now I've been bedridden for the past 3 months. I can barely stay up with out getting shaky & exhausted. There's a lot of videos on YouTube on people who are going through this. It helps some what to ease my mind until I start to feel worse.

Hi bluecb,

Sad to hear you are suffering so much... I too have a vit D deficiency - over time, and very slowly, I managed to get my levels up. The thing that worked best for me was, during the summer months, getting as much sun as possible. I have a dark skin tone that tans easily. However, this makes it harder to get Vit D from the sun. Fairer skin tones just need to stay in the sun until they get a slight pinkness - no suntan lotion. So, I get as much sunshine and daylight in the summer as I can - between march and October, in the northern hemisphere, the sun is not high enough for us to absorb vit D, I combat this by having 9 minutes a week on a sunbed - some people will gasp at this in horror, however, I managed to get my level from 15 to 85 with this method...the risk of skin cancer from that 9 minutes a week in the winter months is a risk I will take - feeling so poorly from the D deficiency is not to be recommended. Of course having a b12 deficiency and ferritin deficiency as well makes it doubly hard - but I can honesty tell you after years of feeling so poorly with the D deficiency I feel much better...still fighting to get the correct treatment for B12 though!!

The advice regarding sunbeds is as follows:

“Low pressure” beds are the better choice as they deliver more UVB lights when compared to “high pressure” beds, which deliver more UVA. UVA rays are those more strongly associated with photoaging, wrinkling, and cancers. Also, it is important to find a sunbed with electronic rather than magnetic ballasts. The magnetic ballasts are associated with electromagnetic field (EMF) exposure and excessive exposure to EMF has been linked to increased incidence in cancer. So, low pressure, electronic ballast sunbeds are good for vitamin D production, second to real sun exposure, but only if you don’t burn.

Of course I am not medically qualified in anyway; just a fellow sufferer who used this method to get better 😄

Bluecb in reply to Ree2705

Where I live, we're in the winter months right now. I live in a small town along with other small towns lol. There is only 1 tanning salon around here & im not sure what type of beds they have. When I was staying with my sister about 3 hours away from where I live. During the summer I would tan in a tanning bed. I was told one of the safest updated tanning beds that were out lol. I did get sun, always out riding 4 wheeler, playing with my kids & dog. I just don't get how my vitamin d could have got so low. How long did it take for you to start to feel better & what was your level at?

Ree2705 in reply to Bluecb

My level was down to 18 if I remember rightly - I was dreadful!! It took a good 12 months to feel better and now I try too get as much time in the sun - abroad - as I can in the summer to keep me going during the winter. One thing I find is that by the end of October symptoms start to reappear regardless of how much sun I've had so the sunned then tops me up; this tells me that your levels can drop very quickly. I will lie on any sunbed I can find because the thought of being poorly is just horrifying to me - I think it's an on-going project the minute you stop your levels drop rapidly!! Maintaining my level has become an obsessive hobby, but to me it's worth it!!

I really hope you can find a way to help yours x

I've been documenting my symptoms. For the past 2 days I've had chest pains, & have been having a hard time sleeping even after taking something to help calm me. The head pains have gotten worse. My hearing feels like it's coming & going. With a light ringing. I don't know how to describe what I'm feeling anymore. I feel worse then I ever did. I want to go into the er but I wouldn't know what to tell them. The weakness just keeps getting worse. I'm so tired & so scared. I'm scared to go to sleep for I feel like I won't wake back up. All I could do is pray.

HiddenThis reply has been deleted
SweetorDry in reply to Hidden

Epictetus, I read that link with interest, just as I was starting to think my problems were caused in part by a Vit D deficiency.

However, telling me not to take a natural substance produced by my own body in ideal conditions and then flogging a Hypertension Drug.... quote : "The sprue-like enteropathy recently associated with OLMESARTAN involves severe and protracted diarrhea " has not gone down too well.

I can tell by the spelling of diarrhoea, it is from the U.S. (I`d hate to see drug adverts on the TV all the time, it must drive hypochondriacs up the wall. )

So, not a a meaningful, scientific rebuttal. But,

I`d be interested to hear what fbirder has to say about it. :p

I have low vitamin d and b12 and have been diagnosed with pernicious anemia. Have you been checked for B12 deficiency because it sure sounds like you have pernicious anemia on top of that need Vitamin D deficiency. The same as I did. I have experienced all these problems and it is a 24/7 battle. But I kept at it exploring things expecially since my stomach lacks the cell for nutrients to be absorbing in my body. This is what I found and I pray to God it helps you because it's working for me. Just to let you know in March my vitamin D was at 20 and my vitamin B12 was at 125. It was checked 6 months later in October my vitamin D Dropped to 13 and my vitamin B12 dropped to 105. Needless to say at that time all my symptoms took a turn for the worst. The chest pain the tingling the numbness the headaches and stomach aches feeling like I was going to die. I have went to a gastrinologist bone health specialist I've been checked out but what I found is through a vitamin called Garden of Life which has no preservatives and it is gluten-free excetera in a mouth spray changed my life for the better. In 4 weeks my B12 went from 105 to 443! My vitamin D went from 13 to 19 in just four weeks. Now I don't know if the vitamin B12 is helping the vitamin D because it's just the B12 and it's just that kind not the others. But what I did was research Foods for the B12 and vitamin D even though it's a slower path. I cannot take Vitamin D supplements or I have permanent constipation and stomach pain. So what I did was eat a banana every single day raise your potassium everything else. I started out with 500 MCG of the spray because that's all my body could handle because my B12 was so low it would react with giving me anxiety if I took any more Did you know that when your vitamin B12 is that low it produces anxiety and depression? I also eat.tbree dates a day. Tuna fish helps I drink a lot of green tea, helps with anti-anxiety I drink a lot of ginger tea with raw honey and both of these for the stomach aches and ginger helps I'm trying to think of the other things that I've been doing food wise. Stay away from bread helped a lot. I am now going to go gluten free because I'm starting to get better but I still have a little ways to go but I think I am going to help some people by recommending this Garden of Life B12 mouth spray. Please please try and let me know. I actually started to feel better in a couple days. I also tried hypnosis and it works for me. One time it took 75% of the pain away in my stomach it also helps keep the Stress and Anxiety down I know that's not for everybody but it works for me. I'm not this holistic freek person I am just a person that is 62 years old and bound and determined that I am not going to let this thing get me. I will be meeting with a new primary doctor since my old primary doctor believed every single thing was anxiety no matter what and he was wrong a thousand times. But I have a chiropractor massage therapist of gastrinologist a cardiologist and a bone health specialist that are behind me 100%. Just keep pushing. Please let me know if this helps and take care I feel your pain!. Sorry this is so long you are very welcome to message me I will help you through anything that I can

Bluecb in reply to Jackiekay

I finally gave in & started taking Zoloft for my depression. I haven't been on any anti depressants in over 10 years. I feel that if I do this, they could rule out my depression as being the problem. Because I still feel weak an exhausted after doing any little thing. Plus with the added side effects I feel funny, I feel like I drank an energy drink/feeling wired. My eyes were dilated afterwards. I just hope they get to the bottom of this & can fix it. I have other problems such as with my kidneys. I've had a couple bad bladder infections within the past 2 months. They found blood in my urine as well. I just don't know. I have 2 different things going on with me, but yet I'm not sure they could be related. Or maybe something else is just wrong with me all together. Even though I do have vitamin deficiency.

I suggest buying 5,000 iU capsules of vitamin D3 from Amazon and taking one per day. I'm not convinced that taking huge doses once a week is a good idea.

Take it with your fattiest meal of the day (vitamin D3 is a fat-soluble vitamin).

Vitamin D3 supplementation raises the amount of calcium you absorb from your diet. This is good if the calcium goes into your bones and teeth, and not your soft tissues and arteries. To make the extra calcium go where you want it to you need to take vitamin K2 as well. It is possible to buy combined vitamin d3 and vitamin K2 supplements, if this interests you.

It is not a good idea to take calcium supplements, unless you know (from testing) that you are deficient in it.

It is also necessary to take magnesium to help out with getting calcium into the bones as well. There are lots of ways of supplementing magnesium. Take the one that appeals to you most :

Since you have a lot of ground to make up you should probably get your vitamin D re-tested in 4 - 6 months. I doubt it would be worth it earlier than that. Once your level has risen to optimal then you should continue supplementing but at a lower dose. You can either buy a lower dose supplement or stick with the same dose but take it fewer days of the week. You would still need to take vitamin K2 and magnesium.

humanbean in reply to humanbean

The optimal level of vitamin D is 40 ng/mL in the units of measurement usually used in the USA.

My Vit D level was 9. It took a few weeks to see all the benefits however, almost immediately I could walk again. The pain in the soles of my feet were horrendous.

On investigation I was found to be deficient in many vitamins and minerals therefore needed to bring all in balance before feeling much better.

I hope you feel better soon.

Tatarolle22 in reply to mauschen

What did u take to feel better ??

Granny56 in reply to Tatarolle22

I brought iron, folate, selenium and Zink into range. Increased my B12 injections from 3 monthly to monthly and added Biotin N a vitamin B complex to the mix. Oranges provided the bit C necessary for the iron to be absorbed and I would suggest milk for calcium however not for me with lactose intolerance. Vitamin D 20,000 per week was difficult as a side effect was explosive diarrhoea without warning. After a while this settled.

I had a good endocrinologist who helped me monitor my progress so that I knew when to stop supplementing.

I hope this helps, good luck!

I get the same symptoms as the other people who have posted.I have always thought it was because I have ME and fibromyalgia,but maybe some are caused by vit D deficiency,I dont think I have been tested for it.I do have vit B injections,now one every three months but initially I had six in two weeks as my legs were swollen but maybe I need to take vit D too.

Hi ... how u feeling now ? I'm going thru the same thing ... any suggestion on med etc

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