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hizzy 02-09-2012 12:30 PM

vitamin D deficiency. does that explain my symptoms?
hi, i joined this website because i was hoping to find other people going through the vitamin D nightmare like me!

i am a 30-year-old female who has always been in excellent health. i'm talking like maybe one cold per year, an occasional UTI, and nothing worse than that ever. i found out my vitamin D level was 18 about a month ago, and i live in FL (the sunshine state!). i have an office job where i don't get to spend much, if any, time outside during daylight hours. i started feeling run down last october, and it got progressively worse until one day i collapsed at work. the best way i can describe it is like a car running out of gas. i had no strength to sit at my desk, and i had to lay down on the floor until my boyfriend could come get me and take me home. i missed a little over 2 weeks of work due to severe fatigue, muscle twitching, an internal sensation of tremor, muscle cramps, shortness of breath, and just generally feeling unwell. this progressed to terrible brain fog, dizziness, panic attacks, and other cognitive symptoms that are just not me. i saw my PCP and a neurologist, who ran a bunch of blood tests (EXCEPT vitamin D!), and all was normal. they concluded that i probably had a weird virus that would pass. i started taking a multivitamin then to help boost my immune system that had a little D in it, but not much.

fast forward to january when i was only feeling marginally better and still had to miss work here and there because i didn't have the energy to work. a friend from college who is now a doctor suggested i see a rheumatologist to make sure it wasn't something autoimmune (my worst fear). the rheumy checked my D level and found it to be 18 (all other labs were normal - hooray!). at the rheumy's advice, i started taking vitamin D3 1000IU daily with 600 mg of calcium carbonate twice a day for about a month, and i started feeling MUCH better within a few days (btw, my serum calcium has always measured normal at 9.9-10.2). but after about 2 weeks of supplementing, i started feeling progressly worse again. a coworker had his vitamin D level tested after hearing mine was low. his was low, too, but his doctor told him to take 5000IU daily with calcium and [U]magnesium[/U]. he sees a naturopath. i upped my intake of vitamin d to 4800IU daily after hearing what his doctor advised him. that was about a week ago, and each day i have felt a little worse than the day before...muscle weakness and tiredness. some twitching, aching, and cramps again. and today i'm dizzy with brain fog. :(

i saw my rheumy for a follow up yesterday, and she told me that i shouldn't take vitamin D with a high fiber breakfast because she has observed that her patients don't absorb it as well with fiber. well, i have been taking it immediately following my fiber one cereal up until about 3 days ago! she said that there is no research on the fibery meal absorption issue, but that she has observed that her patients seem to absorb vitamin D better when taken with less fiber and a little bit of fat in a meal since it is fat soluable. she wants to check my vitamin D level again in 2 months. she said it was okay to up my intake to 4800IU daily. i have been eating fiber one cereal daily for about 5 years due to constipation issues, so i wonder if that wouldn't lead to some of my deficiency...

so, my questions...has anyone else had this nightmare array of symptoms with vitamin D deficiency? most days i feel like i only have the energy to go to work (if that), and then i have to come home and immediately go to bed. i'm not really tired as if i need to go to sleep, i just have NO ENERGY. at times, even laying down feels like it's taking too much energy. i'm worried that my deficiency isn't even really as severe as i've read in other cases (some people as low as 6!), but my symptoms seem to be more severe...

and how long will it take me to start feeling like myself again? after 4 months of this, i am so ready to have my life back! my boyfriend is starting to say "there must be something else going on," and he mostly thinks it's in my head and that i'm manifesting symptoms of anxiety. well, i AM anxious, but it's secondary to all my other symptoms.

also, what has been your experience with taking magnesium with vitamin D and calcium? i have been trying to read everything i can find on this subject, but some info is conflicting, and my rheumy didn't seem to be fully knowledgeable about whether or not i needed to add magnesium.

thanks in advance!

SanyBelle 02-12-2012 11:00 PM

Re: vitamin D deficiency. does that explain my symptoms?
Hi hizzy!I've read you story with great interest because I could have written it! I just had all blood tests done and the only one out of balance is D3 and I too live in Florida. I just started taking 10000 IU a day, so I will see if it helps. I didn't add any other vitamins or supplements to it.

Keep me posted on your progress!

hizzy 02-13-2012 02:24 AM

Re: vitamin D deficiency. does that explain my symptoms?
hi, sany! thanks for your interest and support, although i'm sorry to hear you're feeling as cruddy as me!

the past couple of days, i have been taking my D3 first thing in the morning after eating a big scoop of peanut butter and drinking a glass of almond milk (for the calcium)...then i try to wait about an hour before eating my regular cereal so that the D can bind to the fat in the peanut butter and my body will hopefully absorb it better (i read about someone doing this on another post about vitamin D!). i think that that's helped me feel a little better over the past few days, so hopefully that trend will continue. i was actually able to get out and have lunch with my sister, go to hobby lobby, and walk my dog around the block which i haven't had energy to do in a while! haven't felt quite so foggy headed either, although when going out and about, all the activity in the restaurant seemed to overwhelm my senses...hard to explain exactly; just felt like i was hearing and seeing everything going on all at one time and my brain was on overload. my sister has a coworker with vitamin D issues, and the coworker told her that she seems to only be able to absorb a certain brand of vitamin D3 supplement, and she has tried them all. i am taking solgar brand, which i have always taken before (i'm vegetarian, so i make sure i keep up with my B complexes), and i know them to be excellent quality. they cost a pretty penny at the local health food store, but they are worth it!

i went ahead and tried some magnesium with my vitamin D, and it gave me diarrhea. i read that if that happens, you don't have a deficiency and you should only take it to the point that your bowel tolerates it. so, guess i get plenty from my diet!

i think what is worrying me most is that my weakness seems really localized to my left upper arm and left thigh...the one-sidedness worries me, although i am left-handed, so maybe the weakness comes from using my dominant side more? i have twitching and muscle cramps/aches in both arms and legs. i have also been quite dizzy off and on, although some improvement in that over the past few days since taking my peanut butter/D3 combo. i had a CT back when all of this of my initial symptoms was numbness/tingling bilaterally in my hands, feet, and sometimes mouth and tongue, which now comes and goes (seems to of course happen when my anxiety is highest). the CT was negative, which put my mind at ease quite a bit. but i am concerned that a lot of these symptoms match up with MS from what i have read. :( my doctor assured me that MS doesn't initially present like this. at the same appointment when i had the CT, the found that my potassium was a bit low, but they said it wasn't low enough to cause any of the symptoms i've been having, and it's since come up in the normal range.

since i posted, another friend found out his D3 is practically 0 and his doctor diagnosed him with osteomalacia (pretty much the adult form of rickets, from what i understand)...but he says he hasn't noticed most of the symptoms i've had. he said he's pretty much felt the same with occasional achy bones. i wonder if being female and needing calcium in a different way than men means us ladies have different symptoms when our vitamin D is out of whack?

i would love to stay in touch for support! there are days when i just want to cry because i want my life back so badly! i want to ride my bike to work again, and go hiking on the weekends, and have the energy to go a late movie with my it is, there are days when walking out to the street to get the mail from my mailbox feels like about all i can do. :( i sure hope you feel better very soon!

p.s. sorry for lots of typos...i write this at 4:30am as i just got the call that my sister is in labor and is going to the hospital! waiting to get the call that my first niece is definitely on her way so i can head up there! another precious reason i need lots of energy!

jenj770 02-13-2012 03:54 AM

Re: vitamin D deficiency. does that explain my symptoms?

18 is very low for vitamin D and it does take awhile to raise the level. Your rheumy is right about taking D with a meal including fat. I would also suggest taking K-2 as well as it helps the D go where it's supposed to go.

My only other advice would be to take a calcium supplement other than carbonate, which is probably the least desirable form of calcium. Some of your symptoms may be due to the side-effects of this supplement. I like Ezorb but there are other good choices as well.



hizzy 02-13-2012 04:19 AM

Re: vitamin D deficiency. does that explain my symptoms?
hi, jen. thanks for all that helpful info! i will definitely try K2 and ezorb! and i am trying to accept this as a lesson in patience...i appreciate you reassuring me that this will just take a while to correct. every night, i go to bed thinking "tomorrow will be the day i feel like myself again," but i guess patience is the key.

i've been amazed at how the doctors i've seen seem so uneducated on most vitamin/mineral B vitamin levels were checked when my symptoms began, but they were normal, and my PCP didn't even consider any other deficiency issues. once she decided it was a virus, she pretty much told me to put mind over matter, go back to work, and i'd be okay. very frustrating to find out that this is NOT a mind over matter issue! thank goodness my rheumatologist has some education on vitamin D!

jenj770 02-13-2012 08:23 AM

Re: vitamin D deficiency. does that explain my symptoms?
Forgot to add:

An excellent source of very absorbable D3 is:

Bio-D Mulsion Forte by Biotics Research. They also make a brand without the "forte" on the end but this one is better. This is a liquid. You add a few drops to H2O.

hizzy 02-17-2012 02:25 PM

Re: vitamin D deficiency. does that explain my symptoms?
hi, sany. feeling any better at the end of this week?

i think my peanut butter/D3 combo on an empty stomach first thing in the morning is starting to pay off. i definitely feel better today than i did earlier this week, though still a long ways from feeling like ME again. had quite a bit of anxiety, but i have been very stressed because my brain fog keeps me from being productive at work, and i feel like i'm getting burried. plus, i just don't feel good, which is stressful in and of itself. :( but my muscle weakness feels much improved today compared to monday, and i am so thankful. i am trying to remember jen's reassurance that it takes a while to get levels back up to normal.

i have alternated days of taking my solgar brand vitamin D and the much cheaper nature made brand i got at walgreen's...i gotta say that i have felt better on the days i take the cheap stuff!

mcscrap 02-17-2012 05:35 PM

Re: vitamin D deficiency. does that explain my symptoms?
I came here looking for info on Vit D glad to find your thread. I just found out this week that my level is at a 12....and my iron in the toilet too. No wonder I have been feeling so run down! Starting my supplements tomorrow for the anemia. Still need to get to the store for the Vit D...hopefully will get that tomorrow too. Thanks for starting this.

hizzy 02-19-2012 06:19 AM

Re: vitamin D deficiency. does that explain my symptoms?
hi, mcs. yes, low D + low iron sounds like a very uncomfortable combo! do you mind sharing your symptoms? hope you feel better soon!

mcscrap 02-19-2012 07:26 AM

Re: vitamin D deficiency. does that explain my symptoms?
[QUOTE=hizzy;4930270]hi, mcs. yes, low D + low iron sounds like a very uncomfortable combo! do you mind sharing your symptoms? hope you feel better soon![/QUOTE]

I don't mind at all. Most of them I wrote off as being overweight, getting older and having three little kids. I know the supplements won't erase them because it is something we all deal with, but it will reduce them.

muscle weakness (one flight of stairs made my muscles tired)
shortness of breath (again, one flight of stairs)
depression/anxiety (I have always had, but it has been worse lately)
restless legs
cracks on the corners of my mouth
dental issues
muscle pains

I am really suprised I don't feel worse. Normal levels of Vitamin D are 30-100...mine was at a 12. My iron is low at 8.9...should be over 12. I am waiting one more detailed tests for the anemia.

hizzy 02-19-2012 07:56 AM

Re: vitamin D deficiency. does that explain my symptoms?
your symptoms sound so much like mine. i haven't had dental issues or cracks in the corners of my mouth, but everything else is spot-on. i am glad you mentioned restless legs, because i forgot about that symptom...i have been having that over the past couple of days. it was happening when i first started feeling bad, but went away and is now coming and going. it feels like a slight vibration/shiver in my thighs/groin, but when i touch my leg, there is no actual tremor...just the internal sensation of it. when i stand up or move around it goes away, or if i can make myself sit still long enough to relax, it will eventually calm down. it was pretty pronounced last night when i went to bed, but i eventually fell asleep and it didn't bother me through the night...this morning, as soon as i got up and moved around, then sat down again, it started up. it's very mild and not painful...just distracting!

how about muscle twitches? had any of those? mine are like when you get a twitch in my eyelid, except stronger and in my arms, legs, and sometimes back. i was having some kind of twitch somewhere in my body at least every 10 seconds for a while, but over the past week, it has improved a lot.

Misty800 02-19-2012 03:27 PM

Re: vitamin D deficiency. does that explain my symptoms?
I had posted on the Fibromyalgia board and decided maybe some of you would like to read my experience with Vitamin D deficiency.......

I take the Carlson brand of Vitamin D3 2,000 IU twice daily. I found it at Whole Foods in Texas. My research indicated that Carlson brand was a good one and doctor recommended it. I also take Citrical calcium and Magnesium 250 mg. two times daily, both help Vitamin D to absorb.

After 30+ years of Fibromyalgia, found out my Vitamin D level was 26 and after a few months it raised up to 30 by taking Vitamin D3.

The normal level of Vitamin D is 50-100 for optimum health. Some doctors are happy with 30 and others think it should be in the 50-70 range.

After being on Vitamin D3 for a year I do not ache and hurt as much as in the past, feel better in general. I now wonder whether the Fibro diagnosis was correct or not and all along it was a vitamin D deficiency.

According to my research the body has a Vitamin D storage and after getting low it is difficult to raise the level up to optimum due to body using vitamin D daily.

Too much Vitamin D3 can cause problems and not enough Vitamin D3 will not raise the level. Taking Vitamin D3 must be monitored by a physician, not a do it yourself thing.

This may be something others may want to have checked, your level might be low and need Vitamin D3 supplement in order to feel better and reduce or remove the aches/pains.

hizzy 02-20-2012 11:18 AM

Re: vitamin D deficiency. does that explain my symptoms?
thanks, misty! i just switched to calcium citrate at jen's suggestion. what form of magnesium do you take? i've read that magnesium oxide is likely to cause gastrointestinal issues, and is really the least desirable form since these days, with research pointing toward the benefit of ANTIoxidants. i'm reading that magnesium taurate is regarded as the best form, generally. i eat only whole grains (gave up processed white pasta and bread several years ago) and dark leafy greens pretty much daily, but could i still be magnesium deficient since i've had vitamin D issues?

now that you mention it, it does make sense it would be difficult to build up stores once you deplete yours. has it taken you the full year to start noticing the benefits of vitamin D supplementation? someone else somewhere on healthboards mentioned that they heard you can generally count on raising your level by 10 for each month of supplementing with 1000 IU of D3 daily, but they didn't have a reference for this, and it seems unlikely that everyone absorbs it so uniformly.

my rheumatologist ordered labs to recheck my vitamin D level again in mid-april, so i'm trying to keep in mind that she must not feel there would be any significant change in my level before then.

snowbell60 02-22-2012 02:50 PM

Re: vitamin D deficiency. does that explain my symptoms?
Hi hizzy,

I completely hear you. I have been going through this for about 2 years now. I have gone through all the tests that the doctors could think of including thyroid. Everything came back to be normal except vitamin D and iron. My iron is back to normal but Vitamin D has gone up only a bit. It was 29 when they first checked it and put me on 1000 IU daily. I felt better for a bit but later started experiencing even more fatigue and joint pain. I barely make it to work and back. I take my vitamin D usually in the morning with breakfast. I also feel that it makes me slighly dizzy and hypoglycemic. My vitamin D level went up to 36 and then went down to 32. However, I don't feel any better. I take the NOW brand of vitamin D3 1000 IU. Just like you, I can't wait to get my life back. People around you think you are making it up and are depressed. Yes, you get depressed when you are unable to lead a normal life and struggle with day to day activities !

Do you have any recommendations for any particular brand ?

Misty800 02-23-2012 01:40 PM

Re: vitamin D deficiency. does that explain my symptoms?

The magnesium I have been taking for many years is "magnesium oxide" current brand Nature Made, no gastrointestinal issues.

After a few weeks taking Vitamin D3 I noticed a difference, realized I was feeling better than I had been. Feeling bad apparently came on slowly and I did not realize how bad I really did feel for a long time. Now walking across the room is without much effort compared to before taking Vitamin D3.

In April I will have Vitamin D level checked again after taking 2,000IU daily for about a year.

My level did not go up 10 points per month. Only went up from 26 to 30 in 3 months while taking 1,000 of D3.

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