Vitamin D and Peripheral Neuropathy:
 

I am going to start this thread, because the subject seems very
new and important.

Everyone is welcome to post on this thread any additional data, personal experiences and questions.

Here is one link I just found concerning diabetic neuropathy:

http://archinte.ama-assn.org/cgi/con...ract/168/7/771

This study was small, and unblinded, but is interesting nonetheless IMO.

On this link Mark describes how his improvement occurred after he starting fixing is low Vit D status:
http://neurotalk.psychcentral.com/sh...119#post293119
Search Mark._. to read his previous posts with his symptoms.

This is the link to D-Action...the group that made the medical video that is on YouTube currently:

http://www.grassrootshealth.net/
and here is their video which I link to often:

http://www.youtube.com/watch?v=TQ-qekFoi-o

This link also has alot of information on Vit D:
http://www.vitamindcouncil.org/

I've been watching the boards carefully for a long time here.
All of the boards are showing low D levels in patients who get tested. I think I have only seen a couple who were in the 40-50 ng/ range! Many have tested very low, almost in the single digits!

It is best to get a blood test to see where you really are. However, the recommendation now, is that 2000IU a day are safe for people who do not have testing. This dose may not raise you much, but there is nothing to say, it is dangerous.

The only exception to this remains those patients with sarcoidiosis. This inflammatory disease appears worse in patients who have higher D levels. This is not understood yet, and until that time that more data are available, those with sarcoid should consult their doctors before using Vit D supplements. Sarcoid is not a common disease.
This link discusses prevalence of Sarcoid and gives data for various ethnic groups and ages most commonly affected:
http://www.pulmonologychannel.com/sa...evalence.shtml

If one looks at the links above, one can see some of the new data coming out about Vit D status and chronic pain.
http://pain-topics.org/clinical_concepts/vitamind.php

http://newsblog.mayoclinic.org/2009/...c-pain-relief/

One myth still surrounds Vit D... and that it can be had from the diet. This is just not true. 8oz of milk typically have 100IU of D2 added!
If you live in colder climates, or do not go out into the sun without sunscreens, you cannot make your own Vit D adequately.

So glad you are starting this, and I look forward to prayerfully being a 'link' you put here for someone whose cure was Vitamin D!

My neurologist called today. Asked me how I was. I told him I'm not sure because he was calling me!
He told me that my bloodwork all came back within normal ranges except for the D (you and I knew that, but he had not yet called to discuss with me).

He said he has seen Vitamin D deficiency cause symptoms that mimick neuropathy. He wants me to just focus on getting these levels up and not do any more testing at this point. He is highly suspect that this is my problem.

As a refresher, I was dx with bilateral Tarsal Tunnel--confirmed through a nerve conducitivty test. Well, the test showed some issues anyways. To the podiatrist, it confirmed it was probably Tarsal Tunnel. I had one surgery to release the area and it did not 'take."

Neurologist said that bilateral entrapment in this way is rare. So not sure what that means for why I tested that way on the nerve conductivity test...

He told me to wait at least a month to expect any improvement in symptoms.

Thank you, thank you, Mrs. D. for starting this thread, and for posting all of the links for reference.

My Vit D was 26, and I was told it was well within normal ranges. I have it up to 45 now, but only because I decided to fix it.

Always request a copy of the results, and look them over yourself. My ferritin was only 22, and I was told everything is fine, 20 is anemia. I also have that up to 40 now. It had been at 22 for over a year when I mentioned the level, that's when I was told maybe ferritin IV's were needed.

You have to watch out for yourself. Many people have been told Vit B12 at 200 is fine too, and we all know that isn't true. Research, research, research.

Yes! Thank you Mrs D! For 'about D'!
 

I've been supplementing? But I know I'm still deficient tho docs haven't done THAT type of test in a while... Going to see one soon and ask [Hope, Hope] that it'll be ordered. I say this because of an injury and then another over the summer. I have literally become a cave-dweller and I do know that I can't wait for warmer weather to go out and soak up the natural stuff! Going that route certainly can't hurt supplements, which aren't really kicking in due to other issues as much as I'd like, nor expected due to those issues. Sigh?
Like the 'B's', the 'D's' haven't been given their due as they should as building blocks to life. A person can only do so much of 'mind over matter' to get well? Supplements and good 'groceries' are needed as well!
Thanks from the bottom of my heart -you've helped me soo much and I know you do a lot for others too! :hug::hug::hug::hug::hug::hug:'s not enough of them? But the best I can do 'on-line'! - j

my rheumatologist has had me on vit d for at least 5 years (can't remember exactly how long). Low vit d seems very common through society as a whole, it does not seem to be restricted to people with a certain condition.

cheers
raglet

Started Vit D Yesterday
 

The timing of this thread couldn't have been better for me. My history is rather complicated, but briefly: I was diagnosed with SFN in early 2005. In late 2007 I started a very quick decline. After a year of multiple tests, and hospitalization in late 2008, finally had Autonomic Testing that revealed moderate Autonomic Dysfunction (CASS score of 6). I was referred to Vandy's neuromuscular clinic. My B12 levels have always been in the mid 500's, but he ran a full B panel, and found that I had a Vit B6 deficiency. He actually expected to find Vit B6 levels too high. Vit B6 is evidently one of rare nutrients that can cause PN by either deficiency or excess, although deficiency is rare.

Between appointments, my mother, who has Mal de Debarquement Syndrome (MdDS) was found to have a Vit D deficiency. (She was actually tested for Vit D because of joint pain.) Within weeks of starting Vit D, not only was her pain diminishing, but her MdDS cleared up. She had been 'rocking' for almost 4 years, and suddenly one day the rocking stopped. Her energy levels increased, and when I talked with her she sounded almost giddy. She insisted I get my Vit D checked.

So, at the next appointment I asked the neuro if he would also test Vit D along with the B6. He humored me. The results were 11 ng/mL - an obvious deficiency. Since Vandy is 4 hours away, and his schedule runs 4-5 months out, he suggested I see my GP for treatment. I took the Vandy results to my GP, who ran his own tests.

His nurse called 2 weeks later to tell me that she was mailing my lab results and a prescription for Vit D - that I did, in fact, have a deficiency. Your post, MrsD was a reminder that I had never received them. Thank You! So, I called and asked they be re-mailed. They came yesterday. Vit D was still 11 ng/mL. The prescription is for 50,000 Units once a week.

I spent the better part of yesterday reading through all of your links, and found that in several of your posts you discussed Calcium and/or PtH deficiency as typical with Vit D deficiency. I have kept all of my lab results since the onset of SFN, so looked back at the results for both. I have been tested for Calcium 13 times. It has always been at the high end of the reference range, and three times has been above. Along with the Vit D, my GP also tested Calcium. It was 9.8 with a range of 8.6-10.2. I have only had PtH tested twice. Both times it was within normal ranges.

MrsD, I would like to hear your thoughts about the Calcium levels. I ran other internet searches and could find nothing that would explain. Also, do you think Vit D deficiency may contribute to neuro problems overall?

Thanks again MrsD. If OK, I'll post my progress here.

Rule of Thumb for Vit D
 

I read not too long ago that if you live north of Atlanta, chances are you are quite probably deficient in Vitamin D. Joan

Some people have high serum calcium. It may be due to the way they process it. Or it might indicate bone tear-down because you are not absorbing enough from food due to low D.

The parathyroid gets involved here, and this gets complex. I don't really understand it all myself, but some people have a condition called Paget's.

Here is an article about high calcium in the blood.
Paget's is #7 listed. People with Paget's also have elevated alkaline phosphatase enzyme levels (liver tests).
http://www.parathyroid.com/high-calcium.htm
I don't agree that it is so "rare"... And I don't agree with the high Vit D intake...that has not shown to be very common in recent studies, but was cited in the "old days" along with warnings about D and hypercalcemia.

It can get quite complex, so don't over worry yet.
I am reminded of a show I saw recently Dr. G (the Science
channel's autopsy show)... she did a post on a 55 yr old woman who suddenly died, and found the Paget's in the skull when she took the skull off. But there were no other signs of it and Dr. G said that is what sometimes happens. The Paget's can be mostly silent, and rarely if ever results in death. (the woman died of alcohol abuse and diabetes).

If you fix the D levels, then have the calcium redone, you'll know more.
You'll also want adequate levels of magnesium as this mineral helps get calcium into the bones. Low magnesium would impair bone building in general.

The heart needs calcium to work, and so do the nerves. So when calcium is low, the body tears down bones to provide it.
(low D would reduce absorption from food and supplements as well from the GI tract).

And certainly all of us would be pleased to have you continue posting here your experiences and progress. We all help each other this way. ;)

Thank you MrsD. I'm to follow up with Doctor in 4 weeks for retesting. I'll post the results then.

Mrs D? Again you bring up another issue? THYROID!
 

Mine is dead [diagnosed 2 years after my neuro stuff started], and, after my neuro diagnosis, where the neuro suspected some likely asorbtion issues, I am suspecting that my parathyroid is picking up part of the slack from the loss [along w/meds?] but I wonder about how much the parathyroid can do under the circumstances. I know it can do some, but in all? How much of 'some' is some?
The orthopedist treating me this summer suggested 'forteo' instead of Fosamax+D and that it DOES increase bone density.... Not fond of the concept of 'self-injections'? But if other docs agree, mite go for it.
Any which way it's a danged if you do or don't situation in my book at this point?
Those deliteful blood tests only tell you what's swimming around IN your blood, not what you actually PROCESS...that's the scary part for me about now.
Thank you as always for your great research! It boggles the mind and then some...but parts of it do get thru to this brain at times! :o - j

DarlinDeb...

My ferritin level was only 13!! Are you saying I'm anemic?
I see my lab says 12-156 is normal.
I know that may not mean anything.
I am trying to get to the root of my pain.
Would this level affect that at all?
I'm def. D deficient and working on that.

Vit. D Deficiency+Mayo link
 

Mayo clinic link/video...

http://newsblog.mayoclinic.org/2009/...c-pain-relief/

interestingly, this guy says that patients with low D levels take twice as much pain meds...

Also told drs that if patients have unexplained pain, to check their D levels..

I hope that news gets around to more doctors and they do the check!

Thanks to pabb for finding this link....

Why the RX D2 50,000 IU doesn't seem to work:

http://www.thevitamindcure.com/blog/?tag=vitamin-d2

most welcome, i'm sure.....lol
i ran across this when looking for testing results....had a patient with D3 of 6, and D2 in the fifties.....want something in "black and white" to present to the doc to get D3 ordered, d/t nonconversion in the body......

found cool D site
 

Hi, I came across this website today. This man is retired and really interested in vitamin D research. He has some Vit. D book reviews and other info. He's a retired engineer. He has some other pretty cool health research he's done, too. Saw it at his homepage

author of site below's webpage... http://www.henrylahore.com/
His Vitamin D link...
http://www.vitamindwiki.com/tiki-index.php

This is a 'newer' site and he appears to be currently continuing to research this subject.

I should add--
 

--that the largest Vitamin D database I've seen has been compiled by Ted Hutchinson, who had a lot of it cross-referenced through Braintalk (there are some posts on Neurotalk by him as well).

He also had a blog going for a while at:

http://vitamind3.blogspot.com/

Thanks, I had my D level drawn last week. I hope they did the right test. I don't know which one they did, nor the results. I imagine D is low, with low K and low Ca. Again, thanks for the info.

I came across the following link regarding vitamin D testing

It mentions 2 tests specifically there ( which I've never had in my life from what I can see form my reports ) are there any others we should be aware of that arent mentioned here ?

And are these the same as the tests everyone else had here ?

cheers

tepol

Yes, there are two tests.

The Marshall Protocol is still questionable and only followed closely by people with sarcoidosis. At this time Sarcoid is the only disease, that is watched by medical doctors doing Vit D supplements. The Marshall Protocol remains unproven.

Your testing should be for the 25-OH D which is the active form, D3.

I prefer this website for information:
http://www.grassrootshealth.net/

It is slightly more conservative than some of the others out there, and I retain a bit of that conservative attitude because of my own training.

Good day! I have been dealing with PN for over 10 yrs. I found a doctor that was willing to help me but then her retired and his partner REFUSES to discuss supplementation with me!

When I asked him to re-test me he actually put up his hand and *shushed* me! I was informed that because I lived in US that I got what I needed form my diet! I know this is NOT true.

I had my vitamin d level when I had it tested was 18! I have been working with a nutritionist who says that this level for a woman should be at least 40 if not more. my new dr will not refill my prescription for Vit D so my question is what form, D2 or D3 and how much? Thanks!

mrsD told me d3. But I think you need to find a NEW doctor. Shushing is just not acceptable behavior. :eek: Most health care professionals are acutely aware of the importance of vit d.

I really have to say this, kick him to the curb.

Vitamin D,PN & B12?
 

First I want to thank Mrs.D and lizziebeth for suggesting that I get tested for Vitamin D.My test showed I was a 10,and also my B12 was at 372.I was diagnosed 6 yrs ago with Pernicious Anemia,my first test came in at 170 and I get a B12 shot 1x a month and also I started with the sublingual B12.I don't know how long my D was down,but I'vebeen having headaches 24/7 for at least a month.Have had the restless /jumpy legs, and itchy hands for years.I have trouble sleeping for more than 4-5 hrs,& my vision was getting bad.
My question is, is there any connection between D and B12 deficiencies?I'm taking 50,000 units of D 1xwk for 6 wks and then will be rechecked.abby2

PS: I never would have thought to ask to be tested for Vit D.:hug::hug:

Dahlek, Forteo
 

I did the Forteo injections for 2 years after multiple pelvic and sacral fractures. Was actually taking Fosamax the whole time I had the breaks. Worthless as far as I am concerned but Forteo brought my osteoporosis testing back to normal. While I dreaded the injections, I do them again rather than have those breaks again.

Billye

Deficient in B-12 and Vitamin D
 

Interesting discussion....

in 2005, I was dx'd with severe vit b-12 deficiency; about two years later, vitamin D deficiency was add; I have PN as the result of b-12 deficiency. I take injections once a week and have for six years. My b-12 levels now huddle around 900-1200, depending on when blood tests are done relative to my injections. I take Vitamin D supplents daily. But only 1000 i.u. a day - is that enough??

I've tried Neurotin 600 mg 3 x a day for a month and no help with PN burning. I've just begun Lyrica 50mg 3x a day...about one week in...still have burning, but not as severe.

Wondering if I should increase Vit D intake? Any thoughts?

Jon

I think--
 

--you can safely increase your daily Vitamin D intake to 2000-3000 IU each day without problems; Vitamin D over-dosage does not occur at those levels (and would likely not be a concern unless you were taken tens of thousands of IU each day).

And--make sure you get the D3 form, which is far more bioavailable.

It apears, from testing, that I am Vit D deficient. But what symptoms would that give. Everything that I read about refers to pain, and/or constant tiredness. I have neither of those.

I do have Double vision, and variable, fatigable weakness. I.e. I can be feeling fine, walk 200 metres and feel exhausted, rest 30 minutes and repeat.

Some people have pain... we had one fellow with upper back pain.
He recovered with normalizing the D3.

You can have numbness or tingling on the face or around the mouth too, with low D.

There can be muscle issues, since calcium is needed for muscle contraction, and magnesium for relaxation. Both of these minerals are enhanced absorption with Vit D.

Low D. is thought to impair the immune system, so more frequent infections may occur when low. There are suggestions too about proper D levels discouraging cancer development (definite proof is still lacking on this one).

If you tested low, you should take it to normalize your levels.

Hi mrsD!

Has the recommended daily dose of Vitamin D changed since Page 1 of this thread was written? I gather that the acceptable range is 600 to 2,000 IU.

Thanks!

It depends on who you listen to.

That government commission was ultra conservative and many researchers disagreed with it.

The Vitamin D council is a very good resource.

http://www.vitamindcouncil.org/

Without testing, I believe 2000IU D3 a day was the upper limit suggested. Some places say 4000IU.

With testing use 1000IU Vit D3 daily for every 10 points needed to raise. A value of 50 is a good starting point. People with MS are often kept by their doctors at a 100 level.

I don't use supplements in summer when I get alot of sun.

One thing you have to watch out for with vitamin D supplements is if you take the heart medications Diltiazem or Verapamil. There is something about the calcium absorbtion that reduces the effectiveness of these meds.

I take Diltiazem and become D deficient slowly over the year due to lack of sun (that's me, nothing to do with our weather:)).Under my GP I take D supplement for 3 months at the most while I level out - having interim blood tests for calcium levels. Then I have to stop for the remainder of the year.

Dave.

From what I see on several medical sites, use of calcium channel blockers with CALCIUM and high dose Vit D is not recommended. It is the calcium combos that get sited most often.

I don't see anything to suggest that moderate Vit D3 is a problem... say 2000IU a day or thereabouts. But taking calcium IS a problem. Really, the recommendations about taking high dose calcium has changed for men and women lately irregardless of Vit D intake... The high dose calcium lends to hardening of the arteries according to some new studies.

I took diltiazem for about 2 yrs as an add on for my blood pressure before I discovered magnesium lotion lowered me good enough to eliminate it and use only one agent, instead of 3. I used to get terrible leg cramps from it, and I never really liked it for that reason.

http://www.everydayhealth.com/heart-...l-blocker.aspx
There are several other sites with similar info out there.

That is what I thought, and as I said I have none of these symptoms. It seems that I have Vit D deficiency, with ZERO symptoms, and lots of symptoms of something else?

My Vitamin D was on the lower end but still within range. Strange because I have been supplementing with D3 2000 iu long before all this started.

MrsD,

I'm no expert, obviously, and until I came here I rarely questioned things - I even had no access to the Net before June last year, relying on family to check for contraindications of new meds.

Here is my own 'go to' site - being based in the UK - this is the page for Diltiazem.

http://www.nhs.uk/medicine-guides/pa...ase%20capsules

I know that, personally, taking a combination of the two does something to calcium levels in my blood which cause concern. Before I came here I was mentally unstimulated and took little notice of effects over Good/Bad. Therefore, I cannot even state which way my calcium levels went.

Dave.

Going to a very good drugchecker....

Diltiazem + cholecalciferol == no interactions found

http://www.drugs.com/interactions-ch...st=646-0,890-0

Diltiazem + calcium carbonate == one moderate interaction
diltiazem ↔ calcium carbonate

Applies to: diltiazem, calcium carbonate

http://www.drugs.com/interactions-ch...st=464-0,890-0

Hence it is the calcium part of a combo pill and not the Vit D3 part.

It is confusing, I know. But I hope this clears it up some.

And as I mentioned before, the trend today is not to use so much calcium as a supplement anyway.

Thanks MrsD,

I will remain slightly confused, but I have a follow-up question about the best source of vitamin D, natural sunlight. Here, from webmd:

Just 6 days of casual sunlight exposure without sunscreen can make up for 49 days of no sunlight exposure. Body fat acts like a kind of storage battery for vitamin D. During periods of sunlight, vitamin D is stored in fatty fat and then released when sunlight is gone.

Gives the basic mechanics, but do you know whether the body produces vitamin D if the sunlight is filtered through glass. I know that glass stops uv rays, is uv the trigger for production?

Dave.

No..... glass filters out UV.... which is required for skin manufacture of D3. Also people using statins, will probably not convert in the skin, well or at all. There is some talk about elderly people losing the ability to make D3 in the skin due to age.

For all those on this thread who are new.... there is a D3 thread on our Vitamin forum here. I've been collecting all the newest news about it and treatment options...

http://neurotalk.psychcentral.com/thread92116.html

This D thread was made for the neuropathy/chronic pain aspect, but there is much more at the Vitamin forum.
Also there are several D3 threads mixed into the regular index of threads.

An interesting article.

http://www.cnn.com/2012/07/10/living...to-sun-safety/

MrsD,
I struggled through the Thread, one-eyed, some interesting stuff in there. I checked my meds Patient Info Sheet - no contraindications with D from them, BUT increases absorbtion of Atorvastatin - Aaargh!

Kitt,

A good article which made me dig deeper. Some (about 35-40%) of UVA can penetrate plain window glass. This, I assume, is reduced by thickness, double glazing.

And Fortified foodstuffs and Supplementation are not as widespread over here as one would like to think. So figures are probably worse for us in general.

Dave.

I've been supplementing with D3 since end of 2006 when my sis brought this to my attention, she is challenged with MS....at that time I was feeling a lowness never thinking it was D deficiency. My lab came in at about 16 as I remember....got it up to 80 over a few years time and felt GOOD at 80, then went thru hip replacment in 2010 and that level dropped 40 pts with this surgery. I had read it could happen and sure enough it did. I have been working ever since to maintain 60+ Vit D.

Best to take K2 with D3 as this is the latest research...both are needed.