New to the forums, Vitamin D low and symptoms

[JJohns64]

I am thankful that I found these forums.  I had been dealing with all of the usual symptoms that people talk about, specifically brain fog for almost 5 years (off and on) and twitching most recently, mostly in the ankle / lower calf area.  After going through a myriad of tests (though reading some peoples story, I havent been through near the testing that others have); Lyme (still a bit curious about this one having watched the documentary "Under our Skin"), MRI (father has MS, mine came back clean), blood test (vit d was 22), still to come is sleep study.  I have been on an OTC Vit D3 of 2000u per day (sometimes taking 4000u) and my number is up to 24 after 2 months.  My doctor would like my number to be over 30, though the more I read this is still lower than desirable.  I feel as though I am improving, the twitching still worries me, because the best way i can describe it is like a "micro twitch", meaning I can feel it, but I cant see it and it only seems to happen when sitting down.  

All that said, I had some questions from others that suffer:
-  Most that suffer from this did the symptoms come on quickly or was it overtime?  Because for me (other than the brain fog) it seemed to come on suddenlyish.  
-  How are people doing with just Vit D treatment, is it working?  Or have you pursued other avenues on your own or with your doctor?  I wonder only because Lyme scares me, because it matches most of what we are experiencing but it is so darn difficult to diagnose, just wondering if I (or others) should keep (or kept) pursuing?

Thank you for reading my post and will do my best to be an active participant with this forum as I progress.  

[fntn]

You've noted it very well, vit's help but it's not the problem, more times than not.

[Artillery]

I was compelled to join up after reading some of the postings in regards to low Vit D.  I'm seeing a whole lot of people who have a collection of complaints that look way more like Lyme & co-infections, of which persistent low D levels are one of the markers that doctors can actually measure.  (Along with various whacked hormone levels.  And the cardio issues.  And sleep problems.  They can see all these, but then tell the patient the problems are not related to an illness as such.)  

After 2 years of pretty acute symptoms, I got properly diagnosed and have been treating Lyme & co directly, and progressively improving.  But while happy to take pharmaceuticals, I'm also trying to help bolster the body in other ways, and currently trying to get my D up, to help the tattered immune system.  The D is making a difference, as I've noticed improvements in the past couple of weeks.  I will probably stick at it for several months, too, seeing how common it is.  The RDA will keep you from going backward, but won't rebuild stores quickly when the body is so busy fighting things off, it seems.

I highly recommend getting Lyme testing beyond the terrible ELISA test, and also testing for co-infections.  Just to more clearly rule in or out what's happening, because if it's more than just a vitamin deficiency, you're going to need more than vitamins to get back to feeling human again.

Best of luck!

[TheLightSeeker]

A low dose bioidenticle testosterone cream might serve you well in addition to your estrodiol intake.
The lack of testosterone in women begins before menopause and production
declines drastically at menopause (menopause causes the ovaries to stop
producing testosterone), thus contributing to osteoporosis, cardiovascular, mascular and sexual deficits.

You may also want to look into.transdermal magnesium supplementation,
hypothyroidism (you may do on your own Dr. Barne's Basal Temperature Test).
If you find your average temperature is below 36.4 Celsius after testing,
you should consider asking for Free T3, Free T4 and Reverse T3 tests,
so you can be checked for both Type 1 and type 2 hypothyroid.
Doctors order only tests for type 1 !  ????

You may have vitamin D resistance so in this case you need much higher
doses of D3 with K2! I'd say minimum 10000 IUs with K2 sublingual drops.

I hope this helps. It really saddens me to read that people like you may be suffering unnecessarily because of how their doctors treat them or rather
MISTREAT them!

Best wishes!
Niko

[12go]

Vit D level is 20 even after taking 4000 ui of D3. Fell and broke  my back, test in hospital keyed in on low D. Regular doc doesn't seem to be concerned about it. Had to demand test after taking supplement. No improvement. I'm also 10 years post hysterectomy due to ovarian pre cancerous cells. Alot of my symptoms have been blamed on menopause. Now taking a low dose estrodiol to try and help the Vit D. Been complaining for years about aches, swelling, not sleeping, weight gain, moodiness, headaches, fogginess in thinking,  heart palps and shortness of breath and after three doctors, i have no answers. still suffering....

[JJohns64]

Well it has been a while since I posted and figured I would keep the updates going.  I looked back at my notes and saw that I started taking 4000u/d on 8/12/14, so I'm 10 months in.  Overall I would say that I have improved, but as many have eluded to, its not a linear progression.  At the moment I am dealing with a "bad" day, that said its sometimes tough to tell as I did my P90x isometricx workout yesterday and that works you out.  I also had a bad day on Tuesday evening.  Prior to that there have been very few bad days.

I also think that my head and anxiety are playing huge, because if I have moments where my legs get a twitch or something like that, I think super negative and its all downhill from there.  Last night, after my workout and after going to bed, I had some twitching and boom, no sleep for me (well didnt fall asleep until 1ish).  It doesnt help that my father has MS, so it weights on me big time.

All that said, is there any correlation between sciatic pain and vit D.  Because I have also been dealing with moments of sciatic pain, normally due to just walking that almost makes me want to go to the ground.  I have had this off and one for a number of years.  I tend to think they are not related as I can stretch, walk out the sciatic issue.  

Thanks for reading and listening.  

[Vitaman71]

It will take at least 6 months before you will feel normal again from Low Vitamin D. Even after your blood Vitamin D numbers return to a normal level, you will still have symptoms come and go. Also, it is a slow improvement process in which some days you will still feel bad and other days you will feel better. It is not a linear improvement as you will have ups and downs. This only adds to the anxiety.

Also, anxiety itself can cause twitching and other physical symptoms. Suggest you continue your Vit D treatments and try to address your anxiety as well.

[JJohns64]

Figured I would provide an update, since I find it somewhat unfortunate that most posts dont seem to have followup by the original poster on how they have progressed.

I have continued to take 4000u per day and at the moment dont have any "major" issues.  I havent had my magnesium levels checked, which I think I should do at some point.  I have finally gotten back to the gym, though I am taking it easy, the first 2 days have gone well.  

As I talked about in my last post I still have "popcorn" tremors fairly frequently.  What I mean by "popcorn" tremors is that within my ankle and lower calf I will feel a twitch in one spot one second then another in a completely different spot the next second.  They dont cause pain just a bit annoying.  They can last for hours and only happen when I am inactive.  

At this point, I have the mindset that I will (unless something changes) ride this out and see if anything changes until my physical in January.  That said, I still have MS and Lyme in the back of my head, but that anxiety is getting better.

[JJohns64]

Yeah that is basically what I have been thinking.  

I think I might post on the Lyme forums to better understand the condition.  Because I would have to say that what I am experiancing are very minor symptoms.  But if for whatever reason it is Lyme I also know its better to catch it sooner, rather than later.  I know that anxiety and watching "Under our Skin", has put a bit of fear in me.  And lastly, I have been tested for Lyme (probably the standard, inconsistent test) and it came back negative.
  
In the grand scheme of things I have low Vit D, current number being 24.  All of my experiances can be attributed to low Vit D.  So the most obvious answer is that low Vit D would be the assignable cause for my issues.  Also, as I have been taking Vit D I have been feeling better.

I think like everyone else, at least for me, the little muscle tremors are not fun and would like them to go away.  I also know from this forum that it can take a long time to get back to "normal", so that said I believe I need to be patient with the low Vit D.

[TheLightSeeker]

Yes, it seems that many people with certain imbalances & deficiencies experience symptoms suddenly.
This "rain barrel" effect or threshold has to do with many variable factors,
such as viral/microbial/toxic load, environmental factors,stress levels,genetics,etc, hence as you said it's different for everyone.
Lyme's disease diagnosis is something just short of a ...never-ending nightmare, so my suggestion is leave alone for now-unless it is highly suspect.

If your condition has been affecting you for more than just a few weeks and should you happen to have chronic Lyme's disease (I have no idea BTW or any suspicion whether you have LD or not), you would be in a pretty tough  situation with getting a proper diagnosis and consequently proper treatment.
I personally know people with chronic Lyme's who have spent their entire savings and years of their lives, pursuing a Lyme's dx & treatment.
(You need to consult with an LLMD- as Infectious Disease Specialists DO NOT recognize chronic Lyme's- get a complete Borrelia & Co-infections Panel done by IGeneX Labs, followed by numerous consultations and treatment
antibiotic, herbals and other meds for possibly years

So having said all this, consider ruling out the easier conditions/deficiencies
first.

[JJohns64]

One other question that has been bouncing around in my head.  Do people that have a vit D def typically experiance the symptoms suddenly?  like a typical threshold.  I only ask because it seems like I did, at least from a nerological standpoint (ie twitchy).  The brain fog has been around off and on for many years (as I stated in my original post).  I'm guessing its different for everyone, but I am also wondering if I should still be pushing a look a Lyme, because they share some similaities.

[TheLightSeeker]

No, magnesium deficiency has to do with tissue magnesium & this will not show on serum testing- serum levels are controlled and only represent about
1%.
Easiest test is a magnesium trial for a few weeks.
I personally do transdermal magnesium oil treatments (magnesium
chloride flakes and water mixed 50/50), where I apply this everywhere
on my body except sensitive areas, leave on for 30 minutes and then
shower. One of the most effective ways to absorb magnesium and without any laxative issues, as it doesn't go through digestion.

TMJ, hmm, look into possible underlying low thyroid function- you would need Free T3, Free T4 and reverse T3 tests instead of the standard TSH, T4 and T3 serum tests, which only indicate serum levels... not function!
This would explain TMJ and more.

An excerpt from "Hypothyroidsm type 2", by Dr. Mark Starr:

"You can see how an underactive thyroid can be responsible for so many debilitating and apparently disparate health problems. Just a small sample includes heart disease, digestive disorders, liver malfunction, lupus, muscular pain, neurological impairment, sinusitis, and sleep apnea (caused by a swelling of the trachea and larynx). Also worth noting are Temporomandibular Joint (TMJ) problems. These often accompany hypothyroidism due to slow contraction and relaxation of the muscles. Muscle spasms are common in hypothyroidism, as are arthritic changes and joint effusions (an abnormal buildup of joint fluid)."

Vitamin D deficiency may also contribute to low thyroid function.

Glad you're feeling better and the brain fog has lifted, but consider drinking   plenty of spring water on "non-thirst" basis, one hour away from meals!
It will serve you in more ways than you can imagine.

Cheers.
Niko

[JJohns64]

Well its been a couple of weeks and it seems to be getting better slowly.  Brain fog hasnt happened since I posted.  Still have the micro twitching from time to time (like right now).  But to be honest, that could be somewhat due to dehydration.

Im interested in the magnesium, would that be something that one would see in a standard blood test?

Also, there was a question of TMJ.  Yeah I'm fairly confident that I have it because my wife told me and a dentist told me many many years ago that I grind my teeth.

[TheLightSeeker]

Careful with vitamin D3 supplementation. Easy does it!
Vit.D3 levels will not magically increase in proportion to (mega) dosing,( as Red Star mentioned, they rise slowly)
so up to 4.000-5.000 IUs should be safe until desired goals are reached
and then dropped down according to your maintenance needs/profile.

Vitamin D3 toxicity goes beyond hyprecalcemia.
One needs also ample vitamin K2 to make sure the metabolozed calcium thru Vit. D3 goes to bones, teeth, joints instead of soft tissues!

Rocksolid, please consider looking also into unregulated or under-regulated thyroid and/or adrenal function (secondary hypothyroid when low adrenal is function is primary), which can be easily missed ( standard serum thyroid tests do not necessarily reveal thyroid function- need free T3, free T4 & Reverse T3) or outright ignored (adrenal stress/fatigue is not an "established" conventional diagnosis until it becomes a crisis- adrenal failure!)

Cheers!
Niko

[rocksolid321]

I have been dizzy for 3 yrs. I kind of have it under control. I had to learn not to give it a life of it's own. When I thought about it it got worse so make sure not to give it life. I also have low Vitamin D @ 15 and now 4 moths later it is at 50. I am still dizzy but I hear it can take 6 months to 1 yr for recovery.  Has anybody looked into TMJ? It an issue with your jaw. If you grind your teeth then this could be your problem. I have been going to a PT for a few weeks and they believe that my neck is so tight that it could be the problem so you may want to look into that as well. Lastly I found a website that talks about the problem we are having. Look up dizzy times and you will find it. A person there said his issue was chronic myofascial pain syndrome. look up his post, his name is Benjamin Turner. I hope we all feel normal one day.

[Red_Star]

My vitamin D deficiency was 30 nmol/L (12 ng/mL) and I couldn't raise my vitamin D and calcium levels until I corrected my magnesium deficiency. When you take vitamin D you can bring out or worsen an existing magnesium deficiency. Talk about catch 22! Optimal vitamin D for cancer prevention is stated to be 100 - 150 nmol/L (40 - 60 ng/mL). If vitamin D is rising very slowly or not you more than likely need more magnesium!

There are many reasons for brain fog. I've had quite a few but vitamin B12 malabsorption caused severe brain fog for decades. I posted some info on causes of brain fog on another answer...

http://www.medhelp.org/posts/Undiagnosed-Symptoms/Spaced-out-feeling-for-years--getting-much-worse/show/1579979