Question about Vitamin D - Mrs. D.
 

I'll recap in case you don't recall - I had a vitamin D number of 18 and was told to take 1000IU of D3 a day by the doc. YOu explained how that wouldn't get me far and why, so I started taking 4800IU per day for about 8 weeks. Vitamin D was retested and it was 41. The test said 30-100 was normal.

So, not wanting to overdose on it, I cut back the vitamin D suppliment to 2800IU for two weeks, then again to 1800 IU, where it is now.

The vitamin D supplement had eliminated all the nerve pain in my calf. Now that nerve pain has come back a bit. I was wondering what is the largest amount of vitamin D I can take in a supplement per day and not wind up with too much in my system....

I looked up the medicare retesting rules and it says they won't pay for another vitamin d level test for a year after a 'normal' result has been attained.

Much thanks again, Karen

Just on a whim, I searched for a self test kit and found this... which is a lot cheaper than the two hundred and something the lab wants... wonder what you would think about this...
http://www.bionational.com/Vitamin-D-Test-Kit.html

The general rule is that 1000IU of D3 for every 10 pts you need to raise to.

The real new normal is 50 in the blood test. But your 41 is a good level... and it seemed to work for you as well. Why not stay at your dose that gave that level to you?

If you get alot of sun, enough to tan well, in summer, you can cut back then. But in winter I think most people in cold climates could use a good dose daily.

So, just so I understand, if I stay at the 4800IU per day that gave me the level of 41, is the level of 41 about where I would hold steady at? I thought that the vitamin d level would continue to rise if I continued to take 4800IU per day. At that supplement level, all of the aching/nerve pain had dissappeared. Franky, at 2800IU, I didn' t have any problem with that calf either... just about a week and a half after I dropped it to 1800IU, a dull ache returned.

I get almost no sun in summer, I am really white and wear sun block. I just quit smoking and figure that might have added some to my previously low vitamin d level. Thanks again for your response Mrs. D.

You can choose whatever dose works for you... Use your calf as your barometer.

Vit D does get consumed by the body in various biochemical reactions. So you have to have SOME daily, and if it is not via the sun, then a supplement is the only other form. Sunlight can give huge amounts to the body, 100,000IU per day for some people, but this form has to be activated, and that may remain inactive until needed. So sunlight is best IMO.

Hi, sorry to intrude on your post but may I ask what brand exactly of vit D you use?

Ive read here about vit D a lot and always think to myself maybe I should take it. I have not been tested so I was holding back on if I should take it or not. I need to go back through old posts and read more about vit D.

You know I was actually thinking along these lines. So I guess I'll go back to the 2800IU level and see if calf issue goes away... then I can stay there, maybe in a couple of months try one of those home Vit D tests, just to get an idea of where it is and to keep myself out of trouble.

THANKS MRS.D!!!

I have different types of chewables.. I'll have to get the brand for you. But you bring up a good point, I wouldn't be surprised if some brands of vitamin D and more 'quality' than others...

For what it's worth, I got my levels up from 7* to 41 using Dr. Best. I don't know if they are the best quality, but it seems to work for me. I take 2 softgel capsules containing 2000IU (so 4000 in total) a day, and have no intention of stopping them for the foreseeable future. My aim is to arrive at 60. At that point I plan to go in maintenance mode.

* I didn't feel too well back then...

Once you get to 60, what is going to be your maintenance dose if you don't mind me asking..

Without knowing my level, is there any harm to taking vit D???

I need to go back and read old posts but every time I do it's in my mind that I should start taking it, I don't remember why now.

thanks

The basic suggestion from those in the research area is that up to 2000IU of D3 daily is safe for those who do not test.

You can start there. Anything you provide will help I suspect.

Thanks, I will check out some of the old posts!

Sure! I'm guessing 2000IU from October to May, and then hopefully get it from the sun in the rest of the months.

I think I read somewhere that the sun has to be at an angle > 45° to be effective in vit. D creation. My GP agrees that, where we live, most of her patients who don't supplement have depleted vit D. levels by December/Januari.

I say 2000IU, but I think the proper answer would be: whatever it takes to not drop below 60.

One thing to remember about numbers...

When Vit D was discovered, the researcher chose to use IUs for
the doses. Those numbers appear big... like the doses for B12 are large, when taken orally.

But in reality the amount of D3 you are taking is very minute.

1000IU of D3= 25 MICROGRAMS.

So in reality D3 is a very small amount taken daily. 4000IU would be 100 MICROgrams.

As a comparison, some MS treatments today keep the patients at testing levels of 100! This is THEIR goal... because the thinking for MS is that low D factors into that disease some way.

For us, a goal of 50 (or at least 40 which I keep) is acceptable.

I can really feel my D levels drop around late Sept and Oct from all the sun I get in summer. So I take about 10,000 IU every other day in winter. (sometimes less). I use Puritan's brand...very inexpensive.

The 1000IU rule is an approximation. Some people may need more, and some a little less. At 5000 IU daily I tested at 43...so I am one of those who need a little more.

I follow this doctor as I really like him and his research. Today I found this link where he talks about the danger and controversy of vitamin D and the test ranges for it.

You can click on the link and if you dont want to watch the video, I dont, I prefer to read, scroll on down and you can read.

Its very long and he presents a lot of info, some of which I need to reread, but for those supplementing with vit D its worth the read.


http://chriskresser.com/surprising-n...ing-our-brains

agree with mrsD
 

my D levels agree with mrsD rule of 1000IU for every 10 points needed

after I was dxd with cidp (peripheral nerve version of MS) my integrative med md advised me to take 10,000IU vit D3 daily

my initial vit D level was below 30 b4 I supplemented

after 120 days, which = time for your entire RBC to "replicate", my level was 117 (anything >100 = potentially toxic)

dropped to 5000IU WEEKDAYS only, then level was 54.3

advised to add an additional 3000IU daily, so I take 5000IU one day, and 10000IU the next

will test again in another 120 days to see where I am

bottom line

1. get initial test b4 you supplement
2. use mrsD rule of 1000IU for every 10 points needed
3. get retested in 120 days and see where you are at

ideally, my integrative MD wants me to get to 90...within 10% of upper range for my condition

but your mileage may vary...follow your physicians instructions

Very interesting what you said - first neurologist said PN, second opinion said, he wouldn't have ruled out MS so fast. I went back to first doc, thinking "I'd rather believe that."

Thank you for your notes on vitamin D, my problem is that with my insurance, I don't think they will pay for a Vitamin D test every 120 days - after reaching a 'normal' level, I read they only pay for one a year. I reached a 41, which on the test said was in the normal range - 40-100. thank you, Karen

PS I am hoping I can use some type of at home Vitamin D test.

Mrs. D:

Just a reminder, I started with a Vitamin D level of 16.2. In March after speaking to you, I raised my Vitamin D to 4600iu. I was better within a week. I kept it there about eight weeks and had another test. It went to a 41. The normal range on the test was 40-100, my insurance says, once I reach 'normal,' they only pay for a test a year.

I dropped it down to 2800iu. Calf nerve pain came back, just a dull ache. Spoke to you on this thread, raised it back up to previous level. Joyfully, the ache went away again.

I just fear keeping it that high will bring up to toxic level in say four to six months or so. And then I won't know about the level. I read about a home vitamin D test on line I'm going to try it in about 2 months, see if it works. It's 50 dollars or so.

Are my fears irrational with vitamin D scores so low? I know you said let your leg be your guide, which sounded like a great idea to me - What do you think, if you don't mind me asking. Thank you again, Karen Sharp

PS I really appreciate the invaluable help I received here : Main Items: The Vitamin D help - took away my 'ball and chain' endless calf cramp/nerve pain, the Benfiotamine - took away nerve pain, the Alpha Lipoic Acid, took away more nerve pain...

NOTE ALSO: Spoke to a chineese urologist I've known forever, mentioned all this to him, he told me to get progesterone cream from a health store - He's focusing exclusively on bioidentical hormones now.. I'm entering menopause same time came down with PN - that took away the rest of the nerve pain in my lower back.

BACK TO THANKFULLNESS OF THIS SITE: Went to see neurologist last week (before lowering vitamin d level when everything was hunky dory) Gave him GLOWING REPORT along with my list of supplements and such... No more nerve pain, no more calf ache, no more strings of nerve pain in rear end... it also 'doesn't get worse as night approaches' anymore... zero tingling in feet -just gone. Gone so long I almost forgot to add it to the 'gone' list... :D Very rarely do I take my bipolar medicine early to deal with pain. I told him I go for days forgetting I have it and for most days, great hours of time forgetting I have this. I rarely have to limit physical activity - no more deciding whether to wash to car or go on bike ride as too much brings on nerve pain.

(Note - had my Vitamin D listed as 2800IU- just an error - I asked him about the Vitamin D level, he said it was ok with my score at 41 and could even go up a bit - I realized later that he was looking at the 2800IU number)

He looked at my long list of supplements and said, "Well gee, it's quite a bit but I have to say it's working."

I will post my long list of supplements but have mentioned The Big Guns above, some of it is for arthitis and menopause, although I've seen mention of most of it working also for PN. (You will not see fish oil in my list - despite taking scads of it before PN, I still can't take fish oil - causes nerve pain all over- neurologist could give me no reason for this :confused:

As promised - here's my "LIST"

As of June 3rd, 2013


Over the Counter

Generic Claritin, Loratadine 10mg per day, morning – spring allergies
Trying to sleep despite menopausal insomnia: Diphenhydramine 100 mg per night (Generic Sleep Pill - Diphenhydramine 50mg and two Generic Benedryl- Diphenhydramine 25mg each Just now realized these were the same thing)

Vitamins

Vitamin D 4600IU per day (had reduced to 2600IU, per day, calf nerve pain in right leg came back, increased back to 4600IU per day, calf pain disappeared again in a week ) Recommended Mrs. D
B Complex same as before-B12 6mcg,Folic Acid 400mcg, B6 2mg,Vitamin A 750 IU (recommended orthopedic doc –PN – he had it too)
B6 100 mg. (recommended Neurologist, the ONLY thing)
Benfotiamine 2 and a half 250mg capsules per day, 625mg per day- recommended Stacy of Neurotalk
(Increased to stop nerve burning in upper thighs, rear end)
Calcium 600mg- arthritis
Glucosamine 1500mg Arthritis
Alpha Lipoic Acid 200mg -3 per day or 600mg total per day)
(Further reduced nerve pain in upper thighs- recommended Neurotalk)
Cinnamon 500 mg per day- me, controls blood sugar
Progesterone Crème – over the counter, Femgest, ¼ teaspoon (Recommended by Dr. Yu – Annapolis; stopped the nerve pain in my lower to mid back- 92%- that had started the day of my last appointment- recommended Dr. Yu)
Flaxseed Oil. 2 or 3-1000mg softgels per day. Recommended both menopause and Neurotalk for PN

OTHER

3 tablespoons Flaxseeds per day- sometimes more – have to eat this early in the day or it keeps me up at night. Recommended both Neurotalk for PN and for menopause

Well, that is great that you are better.

If you eat calcium containing foods, you might drop that calcium supplement. Taking Vit D may be a conflict. Some cardiologists now suggest dropping calcium (esp for women in new studies), as the D increases GI absorption quite a bit.

100mg of Benadryl (diphenhydramine) is a huge dose! As we age this drug has anti-cholinergic effects, that are not good for your eyes, or cognition. 25mg at bedtime should be enough for most people.

Google "risk of hypercalcemia with Vit D" and see what you find.
Your dose of 4800 IU is not really that high, IMO.

It might be that your calf pain, will permanently resolve with proper levels higher for a while. Really Vit D levels take months to resolve IMO. It is not a fast acting supplement.

I'll try to look around the net for you about "high" and what is really high etc when it comes to D.
The Vitamin Council and Grassroots.net seem to have the newest research:
http://www.vitamindcouncil.org/
http://www.grassrootshealth.net/

These two sources have alot of research that they report.

Dropping Calcium: Dr. Lee, author of "What your doctor never told you about menopause" would agree with you. He says people generally get enough in thier diets, not getting enough is rare. The problem is unbalanced hormones after menopause and the way the bone stops doing what it's supposed to with the (in his opinion) plenty of calcium available is the real problem. He suggest supplementation with progesterone cream rather than calcium supplements.

Vitamin D level- I figure you are right, will google. Also had the thought that maybe when the level gets high enough, and then I drop it back, it will resolve until the level drops below what calf is happy with again.

I can't get to sleep without that benedryl - but feel like mind is foggy - I'm going to see a bioidentical doc to see if I can get my hormones further balanced - Dr. Yu is a personal friend and won't treat me. Have apt. coming up. If I can resolve this that way, then no more need for all that Benedryl. If not, I guess I could ask my bp doc for something - just hate to take more of anything, really.

I actual thought that the neurologist might say something bout that Benedryl - cause he asked me once exactly how much I was taking. He didn't, but he said, maybe try to drop some of my huge list of vitamins and supplements over time, one at a time, to get it down to what I need. I can drop the Calcium. The stuff I got from here cannot be dropped. Problem is, I have PN, a good dose of menopause misery AND knee arthritis and Im trying to avoid taking you know, more drugs... like Celebrex, recommended by both orthopedic doc AND neurologist!

It makes me feel like a healthier person when I can take a vitamin and nerve pain drops away, arthritic pain drops away, rather than a prescription drug. It is very emotionally satisfying and makes me feel young, not old.

Thank you again so much Mrs. D. for all of your generous help. :circlelove:

We both find here at this house that 3mg of Melatonin works well.
Hubby takes chlorpheniramine 4mg at bedtime for his allergies, and I take 25mg of diphenhydramine.

If you add in the melatonin, you might be able to get away with 25mg of the diphen. I have found over the years that tolerance happens with it too. So that may have happened to you.

My doctor told me people on Benadryl have more car accidents, and pilots are suggested to not use it at all!

So far I have found that the upper limit for safety for those concerned about D is 4000IU daily.

Perhaps your insurance will allow electrolyte tests? Testing for elevated calcium would then possibly tell you more information anyway?

I don't know if you saw my vit. D numbers in the other thread, but they went from 40 to 34 after only 2 weeks of stopping to supplement, and despite catching just about every ray of sunlight (admittedly not much) available.

I still think it's a lot easier to go back to "too low" than it is to poison yourself, and, FWIW, my GP agrees with that.

Karen, do you have a good integrative doctor that can find out balance hormones like progesterone for sleep, etc? There are so many that need to be balanced for the brain, sleep, heart, skin etc. Most doctors have no clue how to do it. It is bizarrre that most do not know all of the things they should know to help healing.

FYI.. Taking bendryll can cause problems when you try to stop taking it. It is not as bad as zyrtec but there is case study that both of these drugs can have a "withdraw" effect when you stop taking them.

I took both of these drugs for years, especially zyrtec and I was in the percent of people that had serious withdraw effects. Rash and extreme itching, which made me think I needed to keep taking the drugs, was actually caused from it.

I am taking 5,000 iu of vit D now but I have never been tested. I hope it is safe but without testing i dunno, but I really believe I need it.

I remember reading something about people who had low Vit D levels and who took supplements and still showed low levels, especially after stopping taking Vit D supplements. That this was some type of problem with how their body absorbs and processes Vit D. That people with that issue would have symptoms of PN or muscle twitching.

If I can find that article, I will post it.

With that being said, can Vit D3 supplementation in high levels cause neurological symptoms?

I'm going to see a bioidentical hormone doctor at a local gyn at the end of the month. If you mean an integrative doc like a neurologist, doubt they exist where I live. I read about them... I doubt I could actually find one. I am happy that I will at least get my hormones tested and see what else is out of whack.

That's why I bumped mine up - my orthopedic said 1000iu and he said that the reason I had a 16.2 vitamin d level was probably heredity. I know when I bring it down, just a little, my darned calf starts 'cramping' and aching again, which is really just some form of nerve pain