Newly diagnosed and lots of questions

[rick2057]

I got the call from my dr's office around 4:30 on the Wednesday before Thanksgiving - or should I say the voicemail.  All the message said was that my Vitamin D level was low (just found out it was 27.2), and they were calling in a prescription for 50,000 units to be taken daily for two weeks, and retest in a month.  I don't know if this is a normal treatment regimen, or if something is wierd.  I have now been on the 50,000 IU for three days.  Can't tell any difference so far - except my neck and head are starting to really hurt.  Most posts I have seen are one 50,000 IU cap a week for several weeks, not one 50,000 IU cap a day.

I can see from reading some of the posts that symptoms I have been attributing to other conditions may very well be related to the Low D (I also have Low T - any correlation?).  

Head:

Headaches - ocassional
vision change - that really has not been completely explained by opthamologist
Seeing brief flash/image out of the corner of my eye
unsteadiness on my feet at times

musculoskeletal

Shooting pain from neck up back of the head (i have been associating this with cervical spine issue that should have been resolved)
muscles tire easily doing simple things such as holding a book while reading, stirring a pot
hips, knees and ankles hurt
1st two fingers on right hand hurt and swell
"dead zone" on part of my left thigh - diminished feeling and sensitivity to hot and cold

Mental/Emotional

Memory, especially short term is diminished
interest in activities is diminished
interest in work is diminished

I'm sure there are more, but can't think of them at the moment.

I just need some help understanding what the heck is going on?  Will the supplement "fix it"? What can/should I expect/anticipate?

[Seattleanne]

Good luck! More information is good information, right? I know a common experience on here from people with vdd is a mixture of hope and disbelief and despair. It really is hard to be comvinced that little old vitamin d can cause so much pain and crossed wires in the body, but it does. It effects how evey single cell works, every system! To top it off, it is a recovery period of a minimum of 3 months... Up to a year! So difficult to deal with that!! I'm just starting my 3rd month so, given my lowest level,  I'm not hoping for much more than mild improvement until maybe 6 months. I HOPE for sooner, but I was pretty low and my body has to do a lot of healing. The very first day I feel better for a whole day, I'll make sure to post :) hang in there!

[rick2057]

Thanks for your response.  I understand that none of this happened overnight, and that the low Vit D could be the culprit in much of it.... I guess my reason for thinking an Endo would be good is that it almost seems like my pcp is just throwing drugs/supplements at whatever is off instead of trying to get to the root of the problem (running more tests for check other things).  I was the one that insisted on checking T levels, then checking D levels.

I like him, but am starting to question.....

[Seattleanne]

Hi there! I just want to weigh in on what is considered low... I believe symptoms of deficiency start manifesting in the 30's...Possibly 40's. By the time someone is down to the teens and twenties real trouble ensues. So I'd advise aiming for between 50 and 60.

Increase takes a loooong time and I don't know about maintenance, but I'll wager anyone who has ever become deficient will have to monitor levels several times a year and take supplements for the rest of their lives of between 1000 and 5000 daily. That's my guess from everything I've read.

While a visit to an endocrinologist can't hurt, keep in mind that vdd is a prohormone and effects hormone levels as well as every other system in the body. You may normalize after raising and maintaining levels of d!

Glad to hear your levels have gone up!!!

[rick2057]

My most recent Vit D level - after being on the 50,000 units/day for several weeks, was 32.5.  So, I went from 27.2 to 32.5.  Doesn;t seem like a big increase after having been on that dosage.  But, since it is now over 32 (which is bottom of reference range used by testing lab), I am now taking 50,000 once a week.  GO back for testing in 2 months.

I still think I should be referred to an endocrinologist.  TSH and serum prolactim are at or near bottom of reference range, Testosterone is low for my age, even though on supplement; other numbers just aren't where they should be, which tells me somthing just is not quite right somewhere.

[rick2057]

I'm glad to hear that you are feeling much better now.  Gives me optimisim that getting Vit D levels up to the desired range may help with some of my issues.

Congrats!  And, thanks for you responses and help!

[gadgetsmidnight]

Here is a link to a post that shows some time frames for improvement of some symptoms associated with low Vitamin D.
http://www.medhelp.org/posts/Undiagnosed-Symptoms/what-happens-after-treatment-with-vitamin-d-deficiency/show/1151898

I am so much better than I was a year ago.  The only thing that has change to make me better is an improvement in my Vitamin D levels from using Rx strength Vitamin D and OTC Vitamin D.

[rick2057]

First, I want to say thanks to all of you for you responses.  

I know my level is nowhere near as low as many folks on here, and to be honest, I am not sure why my dr has started the dosage that high.  When I finally got to talk to his nurse to get the numbers this past Monday, she said the bottom number of whatever reference range the lab used was 40.

I also know that I have other things going on - high cholesterol (controlled with meds - but still low HDL), high BP (controlled with meds - hereditarily destined to have it, my entire family does and did), some CAD (not enough for a stent or bypass - yet, but again probably destined for one or the other), low T (eh, such is life - brought into normal range with med), some stenosis, bulges, and spurs in the cervical spine (haven't had rest of spine checked - yet), am subject to ocassional bouts with divverticculitis (but haven't had one in close to two years).  Oh yeah, I almost forgot, I have OSA and use a CPAP every night (the CPAP has become such a part of my life and helped so much, I frequently forget to mention OSA since treatment has been so successful).

Things that have gotten better in my life (even before starting Vit D supplements) - I no longer have major anxiety attacks at the drop of a hat; I am becoming more sociable than I have in years; my tolerance level has gotten much better (still have major issues with stupid people    :-) ); I have started exercising (not a lot, but usually do 30 minutes on an exercise bike every morning).  All in all, life is pretty good.

[gadgetsmidnight]

I am no doctor either, but your dose seems high for a person that is slightly low.
Deficiency is under 20
Insufficiency is 20-30

Although most doctors are wanting numbers to be in the 50 to 60 range.  My starting levels was 11.  My doctor (a specialist) placed me on 50,000 once a week.  I have even seen twice or 3 times a week.  The only time I have seen daily at that high of dose was due to an absorption problem in the GI tract (so your dose is not unheard of.)  I would contact your doctor and let them know of your research.  Then ask if there is some other reason why they are having you do it daily instead of the once a week?  There may be a good reason.  Usually Vit. D def. is treated over a long period of time. (8 to 12 weeks or more if levels don't rise quickly)
For some it can take a long, long time.  I have been taking script and OTC since 2-1-10.  I have just gotten my levels into the 50's.  We are going to continue my current dosing schedule through Feb 2011 and recheck then. The doctor does not want my levels to drop again through the winter.

[Phyllis2010]

I do feel better now that my vitamin d levels are in the 30's normal range. This just came out in the news:
Report: A bit more vitamin D is good, not too much
LAURAN NEERGAARD
From Associated Press
November 30, 2010 7:55 AM EST
WASHINGTON (AP) — Got milk? You may need a couple cups more than today's food labels say to get enough vitamin D for strong bones. But don't go overboard: Long-awaited new dietary guidelines say there's no proof that megadoses prevent cancer or other ailments — sure to frustrate backers of the so-called sunshine vitamin.

The decision by the prestigious Institute of Medicine, the health arm of the National Academy of Sciences, could put some brakes on the nation's vitamin D craze, warning that super-high levels could be risky.

[blossom88]

I'm no Dr or pro. at this whole VitD issue so not sure that's an ok amount daily or not. Does seem high but he is the Dr. you can always call them and ask if this is correct. But, you would think the pharmacist would have picked up on it if not? When my issues starts my lvl was a 6 and that's been a few months ago now and although I feel better then I had, I'm far from "normal" I still get tired very easy and can't seem to function for anything. It takes all I have to get anything done, still get random pins/needles and muscle spasms etc. I go back soon to have my lvls checked. All the D I take my lvls should be through the roof!!! Best advice I can give you is give it time and don't stop taking the D thinking it isn't working... It will, it does just take time. For awhile I think I actually felt worse after I started taking it then actually feeling better :(  Right now I just take it day by day and hope for the best :) My emotional craziness as I call it got so bad I had and still do take something for it to calm me down. I don't really know if it was from the D or just the fact I was getting so depressed from all the pain etc. It's not strong and I'm still a bit "out there" lol But, at least I'm not crying like a big sissy all the time now lol

Let me also add my Dr also feels there is more going on with me then just VitD so I am scheduled to see a rheumatologist at some point. Good luck and hang in there!!!!