Vitamin D Deficiency
 

When my orthopedic person was testing me for lyme, he noticed I had the lowest vitamin D level he's ever seen. After reading through here, I guess that could be a problem. He told me to take 1000 Vitamin D a day, so I went to walmart and all of them said D3. I wonder if that is the right thing? Thank you, Karen

I happen to have my test and it says

Vitamin D, 25 Hydroxy 16.2 L ng/mL 30.0 - 100.0

Then he wrote 1000Y/Dm Vit D... ok, maybe that's a D3, so perhaps I did get the right thing.

1000 IU of D3 is very little...and not to expect much response.

The average, rule is 1000 IU daily. for every 10 points to raise.

Your target is 50... if you really low, you are not going to get
far on 1000 a day.

So then, 5000 per day? Can you take too much?

Not really. The whole attitude of D3 has changed dramatically
in the past 5 yrs. I don't think most doctors even understand it all yet.

Here is the Vit D thread:
with videos:

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

Alot is explained on that thread.

Thanks for your response and the LINK!! :)

Hi Karen...I don't know what types of symptoms you are having, but I also have low D my test was 8. I started the D3 as recommended here and it has helped me a lot! I take 5000 for about a month and half. It hasn't cleared everything up but I have more energy and less pain. Good luck to you!

Hi Keeping the Faith.. you just made me feel a WHOLE lot better...!! I'm not sure I have peripheral neuropathy, more like just neuropathy cause I woke up to it in my hips and very tops of legs :eek: today, before, feet and calves, pretty much only. Plus I get all over itching- sometimes combined with pricking.

But Faith Keeper, I would occassionally take two 1000 D's and feel guilty about it... but felt like one was certainly not enough. So I was at work yesterday but will read Mrs. D's link today and will go get myself more supplies.

When I asked the orthopedic guy why mine was so low, he wasn't much in the business of that I suppose and just said, maybe hereditary.

THANK you for your encouraging reply!!:)

Karen, I think you could start at 4000IU of D3 daily, and
get retested in 3 months. See where it took you.

Some people need more than 1000 IU / 10 points. Heavily people with more fat on their bodies, may need a slightly higher dose.

Itching all over, may be a sign of gall bladder or liver disease. Some people with lymphoma have itching also.

my D was real low too
 

Sorry to hear you are going through so much - my test for D was really low also. I'll have to dig it out to see the number to compare. I started taking D perscription pills a couple of weeks ago - twice a week. I had been getting a D shot once a month, but it didn't bring my number up very much.

I didn't realize that it contributed to PN? What have you found out about that?

The crazy thing I have lived in Phoenix for 18 years and to be low of something the sun brings is really strange, don't you think? But I understand it is something a lot of people struggle with. I also have D's in my fish oil too.
Tina

I asked my orthopedic guy (doc, he's so nice, seems like a friend) why I was so low - he said it could be hereditary, just like hereditary high cholesteral and such. Sounds like you've done a lot to try to help yourself - I have no suggestions, wish I did. You'll find something!! :hug: Seek and ye shall find!! I just heard vitamin deficiencies can cause pn, so I figure I better take vitamin d. The orthopedic guy also found an extra joint just sitting in the middle of one of my hip bones, he said that was a - congenial... ok not the word,.... but close, like an benign inherited birth defect.... It made me feel creepy to see it on the exray though.

You and Faith Keeper talked me into it. I took 5000 yesterday. My foot didn't burn when I layed down last night, my new back problem didn't wake me up in the middle of the night, my new back problem was gone this morning. I didn't have all over itching / pricking yesterday. I could have just had a lucky day, or maybe it helped. Thank you.

You and Mrs. D. talked me into it. I took 5000 yesterday. My foot didn't burn when I layed down last night, my new back problem didn't wake me up in the middle of the night, my new back problem was gone this morning. I didn't have all over itching / pricking yesterday. I could have just had a lucky day, or maybe it helped. Thank you.

Also to be fair, I should mention, I'm tapering off Geodon (bp drug)..It already gave me an irregular EKg about six months ago, so it was cut back, so I suspected it when I heard it can also cause cramping (I was having cramping in multiple areas right calf and was starting in the left)... that is being cut down slowly - the cramping has backed off but the foot burning at night began. It seemed like I traded cramping for foot burning. But that 'getting off geodon' experiment is not over yet... but this is why I was so impressed when my foot did not burn last night... in addition, I usually get a half dollar size burn in my right calf at bedtime too, that did not appear.

I took my Protein shake in the morning (Vanilla Keto Shake - half banana and real low sugar scoop of yogurt), the b complex and Q10 the orthopedic guy told me to take, the b6 100mg the neurologist said to take and then the D3 5000... The rest of the day I tried to eat like South Beach Diet says too, just got the book - so all that together... I hope I get as lucky again today, I will be a happy camper.

The RX version of D (oral 50,000IU).....is D2 (ergocalciferol), and not very efficient in raising levels. New studies show it doesn't work, and is not active in the body, to any helpful extent.

OTC D3 will be much more effective. Fortunately, this is quite inexpensive, and easy to find in many stores.

I am corrected my post, it's
CoQ10 200mg Berkley and Jenson from Bj's
and
D3 5000 IU the chewable kind, but Im going to get just the pill kind to cut out the sugar.
Full Strength MINIs Super B Energy Complex
And it's Nature's Plus KETO Slim High Protein Shake
It's chock full of vitamins and the keto makes you feel full for a while - Im also bp and this has helped my head feel better, I've been on and off it for years - whenever there's an ailment, I'm back on it again and I at least feel more positive. I had endless yeast infections when pre menopause came along, I got back on it and they stopped. Cant promise it will cure pn though.

Are those the best?? I have NO IDEA!!! :D

From reading all around here last weekend most other people here sound more knowledgeable than me and unforutnately the orthopedic doc didn't tell me which BRAND he uses (probably the most expensive kind ;) )

I am feeling very HOPEFUL for the first time in a long while - I am glad I popped in here. It's nice to have a break from feeling doomed.

What does OTC stand for Mrs. D? I'm hoping it just means over the counter. Please excuse if dumb question, I'm not used to having illnesses except bp; I'm fluent in that one.

OTC is over-the-counter, yes, you are correct in that.

Both of the most helpful initial supplements for common PN
symptoms, happen to be OTC in the US and also very inexpensive. We are so fortunate in that regard. Given that more people have PN than MS and PD combined, and it is now becoming more common in younger people too!

Hence use your doctor to do the testing that you need. But do NOT assume your doctor will interpret the results properly or treat you properly. It will probably be another decade for that to to come around properly! Get and keep your test results for yourself and never accept "normal" comments.

PD =...?
Peripherral Neuropathy (spell) from Diabetes? :confused:

Thank you for your time and answering my posts Mrs. D. Just as soon as I can get a doctor to test me for something, I'll put up my 'results' :Talkative:

PD= Parkinson's disease.

PN= Peripheral neuropathy

MS= Multiple sclerosis

Considering the prevalence of PN... it is vastly ignored by the
medical community.

I've had gallbladder problems before, but they went away... I thought it was neuropia and the doc (neurologist) didn't say anything like that when I told him about but - BUT I am getting my records tomorrow and getting a second opinion and will keep everything in mind you have told me, Thank you! Karen

Unbelieavable but true :D...

So I started taking 5000 (you know the initials) of Vit D3 on Monday.

I've kept a journal with DETAILED notes...

Usually when I ride my bike (I was a 35/40 min./per day rider - neurologist told me I can only do 10 min. now :mfr_wha:.. I sneak that to 20 / 25 min.) the area in my calf (it's towards the outside and happens to be right on that big nerve that the doctor shocks over and over when he's doing that test that tells that you have an 'abnormality) well.. that area usually 'complains' when I'm riding my bike and when I get back to the house it's gonna' ache for a while.... or even work up an actual cramp, etc...

Guess what, by yesterday, which was Wednesday - when I went out on the bike ride- I could no longer feel a thing (the epi-center' of the worst cramp) - on that calf, at all, during the bike ride! :Speechless: After bike ride, it's barely a whisper today , I can't believe how it has dissappeared.

I hope this is not a fluke or a lucky streak :smileypray:

I spent easy 150 dollars on accupuncture when It first started up, with none of the level of results achieved in couple days with Vitamin D

Also, last night, now I'm sure this was just dumb luck - when i went to bed, no burn, no tingle, either foot, no muscle cramp - no nothing. It was like I never had anything. I sure had fun pretending I was cured for a while. Wow. :D

Thank you 'specially to Mrs. D :You-Rock:
For the Vitamin D INFO.!!!

Now all I have to do is get a handle on my long running spells of all over itch-prickle and I'll be a happy camper.

Also should mention while Im documenting here... the cramps that were starting in my rear end muscles, the cramps that were starting to threaten in the OTHER calf... I can barely even tell they are there now, they have simmered down so much.

D
 

I just got back my latest blood work and my D is still low. I take 2 2000s a day but often forget the second. My doctor told me I needed to take calcium with it. I guess I knew that but I have to up it now.

My Vit D,25 hydroxy is 56 range 31-100

My Vit B12 is 366 range 180-914

Looks like your B12 is low. 400pg/ml is the new accepted lowest norm. Try and get that up to about 1000.

Your D looks good. Far better than most people on ALL the NT boards! Some people test out in the single digits!
Maybe because you are outdoors so much! Hobby and work?

Thanks, I wasn't sure even though they said it was good. Strangly my testosterone level has peeked to 977 Range 285 to 650 for my age. So I have to back off on that. My neuropathy has taken a turn for the worse. More severe numbness and tingling. I can still hike and I seem to feel better keeping the blood moving, but it is a bit scary again.

Happy Story :circlelove: : Short as possible, as favor to friend, began cleaning her house bi monthly (she pays super well)...

Two weeks ago, after i got finished the top floor, I went to the downstairs and realized the dang right leg (calf where it cramps and such) already had an 'out of gas' feeling. Was wondering if I was going to make it through the whole house. Well, I did.

Today, was there again, well into the lower level and suddenly I realize - Hey - I'm not tired. That out of gas feeling in my right calf is non existant... in fact, I haven't felt that in days. More so - there is not even so much as a hint of a cramp right now. It only feels normal like it used to. I find myself fighting back tears of joy for like twenty minutes as this realization dawns on me :holysheep:... I even recalled telling my bf two weeks ago... I might have to start doing that house in two days... one day the top, the next day the bottom.... when I remembered that - I had to finally just go and get a tissue. :)

Now I gotta go tell all the ppl that have been praying for me ...

Thanks for this post
 

I'm glad I stumbled on your post. My PN symptoms started last may and I accumulate new symptoms every few months. I had low vitamin D last May when they checked it, but they gave me a perscription and after a month or so it came back "normal". After reading this post I know that it's more than likely not where it should be. I'm going to go get my D and B12 tested this week.

Lw vit D
 

I also had a very low vitamin d level.I took prescription vit. d fo a few months . I took 50,000 iu twice a week . now I take otc 5000 iu 4 times a week.

The Rx version given by doctors is D2, ergocalciferol. Now we know it is not really effective, since new studies demonstrate that. But it has been on the market for over 40 yrs, and doctors think it is useful therefore. :rolleyes: Rather like the staying power of magnesium oxide which is also poorly absorbed. :rolleyes:

It is best to use D3 cholecalciferol, OTC. 1000 IU per every 10 points you need to raise.

Here is our Vit D thread with the newest information on it:
http://neurotalk.psychcentral.com/thread92116.html

@ Karen....

Karen, don't take it upon yourself to stop abruptly your Tegretol.
This drug should be tapered off slowly, as seizures might result if it is stopped to quickly. You've been on it for a long time, and your body is used to it. So do be careful, and if your doctor is clueless about this, educate him/her and demand a taper if the decision to change your medication is made.

I can't change anything without the doctor :). Right now they're trying to switch the Geodon for something else to see if that has an effect on the cramping. (Agreed by both Neurologist and Bipolar doc) I haven't even got that done yet. Thank you again for your reply although I am fuzzy on the reason why - I had trouble understanding the link you referred me to.

Suffice it to say the link does have a list of drugs that cause
hyponatremia.

In the olden times...there were fewer drugs, and the only people affected much by hyponatremia, were the elderly and those
who had certain kidney problems. Therefore kidney doctors are best trained to handle this.

But as time passed, drugs came along to share hyponatremia with younger people. So the non-kidney doctors have less understanding of this.

You can see by the link it is not an easy thing to identify or treat.
And the types listed depend on what is causing it.

One rare mental illness causes it, called dipsomania. This is where a mental patient over drinks water, as part of their mental condition...too much water you know can kill you...most of us have heard that... and this is how it happens=hyponatremia. When sodium gets too low, or diluted out by too much water, the nervous system cannot work. Sodium and potassium (and calcium to a lesser extent), are how the nerve electrical potentials are created and messages sent. Too much or too little of any of them result in brain failure, muscle cramping or no muscle relaxation (magnesium is the relaxer and calcium the contracter). All 4 minerals are called electrolytes and that is why they are measured in blood tests.
Calcium and magnesium also work in other places than the nerves, but sodium and potassium are how nerve impulses get sent. They move in and out of the nerve membranes to generate electrical signals.

I had an internist once tell me than only the "smartest" doctors become kidney specialists. This is because the chemistry of our bodies is what the kidneys manage, and the chemistry is tough to understand, and highly inter-related to everything else.

So you need to know this is important, and actually critical.
You need to know that Tegretol can create an imbalance in your body that requires emergency treatment. And that if you need to change it now, it needs to be tapered off carefully. That is what you need to understand at this time.;)

Well gee, Mrs. D... guess what happened. I was at work and drinking lots of THIER water in my wieght loss quest, plus the accupuncurist told me I needed more water. At some point in the day - all of a sudden, I began dying of thirst, drinking water made no difference because the water as it was hitting my throat did nothing to stop the all of a sudden dying of thirst in the Sahara Desert - overwhelming feeling. I went into a complete panic called my boss and told her I needed to go to the ER. Then I realized, I was in some kind of horrible panic and couldn't drive - I had to call an ambulance. Once I got to the hospital the panic subsided and I was ok - then they gave me the IV's. Full of IV, I get up next morning feeling like a million bucks. Go to work. Drink Gatorade most of the day, run out of that, start drinking the office water. Late afternoon, it all happens again, only the second time I could sustain the panic well enough to drive myself to the ER.

I realize you have found a link with tegretal but let me go on.. I am astonished by what you come up with btw.... (dont forget there was a week and a half of loose stool going on here too)

I am disabled bp but still work part time. All week long goes by and nada. Next weekend, I am back at work. I had brought in some of my own water. Still trying to drink lots of water as I had been told. When mine ran out, I started on the office water again. All of a sudden... here it comes - the thirsty feeling, the panic - I thought wait - I was fine all day... and realized - until I started on the office water... So I ran to a co workers off and took one of her bottled waters. Began drinking that... it immediately began easing up. It eased up a lot. It was still all I could do to stay at work the last 45 minutes of that day because "it" had started again.

THE NEXT DAY - back to work - brought all my own water - even my own coffee so would not have so much as one drop of the office water (which I"m sure is City Water, btw- but this building is old and these people are cheap and maintenance is lacking)... Guess What - NOT ONE HINT OF THE PROBLEM. Not even an inkling. Not even the faintest twinge - as if it had never happened.

I will never drink this office water again. And there's probably nothing wrong with it - except for some little thing that is significant only to me.

The dying of thirst drinking thing has never returned since, it's been four weeks I guess. My sodium levels rose back up to the minimum required ten days later. My primary physician after hearing the story said - drink when you need to- but don't OVER drink. (I was over drinking on purpose at the advise of that accupuncturist, mostly)

Honestly, I shudder to think what I would do without my tegretal. It stops the all over itching, it's the only weapon I have, it eases the leg cramps when they are bad. I just dont know what I'd do without it - but isn't it interesting what you said and the parallel in my story.