I would like to Post a poll

[Barb249]

I would like to know how many of you have had your Vitamin D level checked. I never realized that it’s a special test to check your Vitamin D level, I guess Sjogren’s and Celica’s disease goes hand in hand.  The doctor checked my vitamin D level on my last visit and to my surprise it was only a 7.5  I was told that it should be between 30 – 100 and if it drops below 32 it is very dangerous.  They gave me a vitamin medication to get it up quick I believe it’s called Drisdol, anyway its Vitamin D 50,000 iu, it’s totally amazing how I have changed over the last few days, energy has doubled, and my bones do not hurt anymore.  I had no idea that I hurt as much as I did until I began this medication.  If you have not had this test PLEASE DO.  They say that anyone over 60, dark completed or lives in an area that has a hard winter is in danger of Vitamin D deficiency, of course poor diet, and drinking will also add to the problem.  

[cami18]

Hi everyone  I wrote a comment earlier but It didn't appear so I must have done something wrong.  Anyway, I want to thank you for sharing the information that you have about your experiences with trying to find out about the cause of the low Vitamin D.  I have only been told that it is caused by lack of sun, diet, or too much screen.  I live in California, I have a good diet, and do not use sunscreen that much.  I do believe that there is an underlying cause for this.  I would like to ask for additonal tests, but don't know what to ask for.  My primary doctor doesn't seem to be giving me any answers. When the test for Vitamin D levels came back a 5 he just said that I needed to be on 50,000 iu once a week for 12 weeks.  So far I have taken two pills and tomorrow will be my 3rd one. So far, I am not noticing any difference.  I am still feeling achy and tired and  low energy.......just tired of feeling this way for such a long time.  Wondering if the symptoms are similar with others who have low Vitamin D levels.

Thanks to all of you

Cami18.  

[kate1975]

Hello,
Mine was 11 and went up to 20. I just came back from Mayo where the Doc told me I would have to be on 50,000 Iu indefinalty. My doc here had put me on 2000 Iu every day after 8 weeks of the 50,000...
Just me experience.. If I miss a pill... I feel it.

[Teri_M]

I have very low vitamin D results. I have had numerous neurological symptoms. I have had much bloodwork done and the only one that was low was my vitamin D. My vitamin D2 read as a (negative 4) and I believe my vitamin 3 was at about 20. I have had brain mri showing 3 non specific lesions, could be x, x or x. MRI's of my spine show some very minor bulding but no lesions. My knee reflexes are hyperactive. From what I am reading, vitamin D can be a symptom of an underlying condition. I live in sunny Florida - born and raised and I have grown up in the sun which is the natural source of D.
Thanks!! Teri

[MiachelJ]

I too was so down at first.  When I finally got my DX and the meds started working (even just a little), I started to feel better.  I do know that I'd gotten myself so down worrying that I was making the physical symptoms worse too.  I am a chronic downer!!!  I'll still get down at times, especially when my reflux symptoms are bad.  And I would stay on the internet and by the end of the day, I was even worse!!!

Hopefully you'll find a good doc find the answers you need!  What meds are you on?  Have you gotten any diagnosis yet?

[cami18]

Hi Miachel J and anyone else who is dealing with this.
Thank you for your note and encouragement.  It is so helpful to get the feedback and support from others on this site.  I am trying to find out if there is another doctor that I can see.  

Right now I am in so much pain and am so depressed.  I am hoping this medication works and that I can find some doctor who understands this medical problem.

Maybe together we can help each other with whatever knowledge we can share with our experiences.

I wish you the Best!!

Cami18

[MiachelJ]

Kind of sad that you just get notes in the mail but as I noted above....exactly the same thing happened to me.  It just so happened that I'd just switched docs and he said to go ahead.  Keep us posted.  I've noticed that most people say it does make a difference.  If my levels are back where they need to be in 12 weeks and if doc says OK.....I'd like to go on a daily maintenance dose of Vitamin D.  Maybe then I won't get that sudden energy, then the wearing off.  But, I don't have any experience except my own so.....

Good luck and hope all have a WONDERFUL week!!!

[cami18]

Hi f
Below  is the note I just received from my doctor.  Apparently he is just going to put me on the prescription without any additional tests.  Does anyone have an opinion if it is wise for me start on this without any additional testing? Hi did not call me to talk about the results or anything.???? I wonder if it is ok for me to just start on this....without  getting an opinion from someone who is really familiar with this problem.  I am not sure what to do.
Cami18

                               (Note from my Doctor)

The Vitamin D level was low, so I sent a prescription to the pharmacy for a once a week supplement to take for 12 weeks, then we should recheck the level again. You can call the pharmacy at 408-972-6335 to let them know where you would like to
Component Results
Component         Your Value Standard Range
VITAMIN D, 25-HYDROXY 5 30-100 ng/mL
General Information
Collected:

2/26/2009 4:26 PM
Resulted:

3/3/2009 2:28 PM
Ordered By:

[kygirl59]

Miachel,

I get my Vit D blood results back the next day every time.  I don't think the test takes long-just some labs are backed up and some Dr. offices take a while to report back.  If I go to the lab in the morning, I have a note from my doc in the mail the next day.

I also have experienced the same results with taking 50,000 IU's of Vit D.  The next day I feel wonderful and full of energy, but after just a few days I can feel it wear off.

I'm a believer.  I go back next week for my 12 week check, so we'll see if my level has gone up enough to be considered normal.  It was 14 last time it was checked.

~Kygirl

[MiachelJ]

At the end of Oct, 08, I went to a Rheumy.  They DX'd me with Lupus.  At the time, they ran a Vitamin D test.  From some things that happened at that visit, while seeing my gynecologist, he recommended that I get  second opinion from "one of the best in the area".  On January 14th, I went to the "new" Rheumy.  He ran MANY tests (did I have any blood left after that one, LOL!!).  On February 3rd, I went in for my test results.  1:162 ANA, positive iGm, everything else (including Vitamin D) normal.  I was to continue my plaquenil (200 mg, bid) and he added 81 mg of aspirin.  My new DX, sero-negative RA (my bone & joint scan lit up  like a Christmas tree in my 3rd, 5th & 6th vertebrae, my chest/breast bones, sacoriliac (sp?), shoulders, wrists and knees), Psoriatic Arthritis (I have VERY dry skin - except on my face and I have one old spot of possible psoriasis on my scalp) and possible Lupus overlap.  My cheeks, nose & chin are red a lot but he said more of a rosacea type redness.  The VERY NEXT DAY, I check my mail.  I get a note from Rheumy #1 with a prescription.  Note says.....your Vitamin D level should be between 50 & 160.  Yours is 19.  Please get the enclosed prescription filled and take for 12 weeks and we'll check you back then.  It was an RX for 50,000 IUs of Vit D and a note to take 500 mg of Calcium twice a day.  I send a copy of the note & RX to Rheumy #2 and ask "should I do this, you said your Vitamin D test OK?".  His nurse asked him and he said "yeah, go ahead and take it and we'll check your vitamin D in a couple of years".  

#1:  First Rheumy said vitamin D test takes a while to run (they didn't get my results for about 3 months).  Second Rheumy had results in 3 weeks.  

#2:  Had read on internet where a certain lab was getting bad results on their Vitamin D tests.  Checked with both offices, neither of them used that particular lab.

#3:  Does it really take a while for a vitamin D test to run?  Could they have possibly done different types of test (the 2nd Rheumy's notes said it was the same test)?  

#4:  Makes me wonder is 2nd Rheumy "really the best around"?!?!  

#5:  My worst problems (the plaquenil was helping with some of my pain by then) was Reflux (YUK!!!) and muscle pain in my right calf.  After one (yes 1) of the vitamin D pills......the next day, the pain in my calf was subsiding.  It had hurt so bad, it would feel like the bone hurting too.  I've been on the vitamin D for 3 weeks now.  I take it on Friday evenings.  By Thursday, I'm starting to ache some.  I'm thinking that, yep, the vitamin D thing is a big deal.  Makes you wonder if a LOT of people's pain could be from this.  I am definitely spreading the word that "if you hurt, you might want to have this checked out".

#6:  The 2nd Rheumy's nurse said you didn't want to repeat this test often because it was very expensive.  When I'd gotten my EOB from the visit to them, there were no expensive blood tests.  

#7:  Confusion.....anyone have any insight for me.

Hope all is well for everyone!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Thanks for listening (uh, I mean reading, LOL) :)

[cami18]

Hi
I have been trying to find information about low levels of Vitamin D.  I had a Vitamin D-25 Hydroxy  test done and just read the results.  Mine is a 5.....very low...The doctor I saw did it only because he had recently spoken to someone in the mental health department who said that low levels of D are often found in people who are depressed.(I have been having depression for years and no one ever did a vitamin D test on me!)  .I am concerned as I have not felt good for a long time and have been complaining but have been put on depression medication which never seemed to help and often made me feel worse.  I go to a HMO  and do not feel confident that I will get the right kind of help. .  I have had aching and depression for such a long time. It is frustrating because when you are depressed sometimes that is all that the doctors see..you are often treated like it is "all in your head"  and you know you are hurting and not feeling well....this only makes a person feel more depressed!! f  I am searching for information about this low level so that I might be able to be informed and be able to ask for whatever other tests might bee helpful From what I read the level that  sounds dangerous.I was diagnosed with fybromylgia  a few years ago and  and Interstitial cystitis.I appreciate any feedback anyone can give me. I have not heard from my doctor yet to see what his plans are.  I just viewed my test results on line yesterday.  I will post what he says when I hear something.
Thank you.
Cami18

[Joni686]

I was dx'd with low Vitamin D and was put on 50,000. IU every week.  I honestly didn't notice a difference in how I was feeling but I think it's because I developed Vasculitis around my heart (from the lupus) and was getting sicker at the time with that.  I was tested again for Vit. D while in the hospital and am still low.  I believe that being on Imruan it eats up my Vit. D.  Taking the 50,000. once a week got a lot of Vit. D into me but I believe taking it daily now is actually better because like my other doctor said you don't get a boost all at once and then a drop the rest of the week.

Also, I noticed several people mentioning cramping in legs, feet etc.  Be careful because I started having cramps in my feet and calves and I ended up in the hopsital with dangerously low sodium and potassium.  This can happen when you have a chronic illness.

We have no choice but to be our own advocates.  Doctors see many patients and even the good ones can't keep up with everything.  We have to research, talk to each other and ask for what we think we need.

Joni

[PlateletGal]

Glad to hear it !  I think that vitamin D (D3) is great for people who are healthy. In chronically ill people, I think it can help in the short term (it works as a seco-steriod hormone).... I just am concerned about chronically ill people who take vitamin D for many years. I tend to agree with Dr. Trevor Marshall's theory on that topic !

[mercygracious]

Have any of you heard a creaking noise in your body, felt movement or had movement/and/or strange feelings in your heart before going on the vitamin d therapy?  I was diagnosed with low vitamin d (it was 18) and was told to take the 50000 iu 1per wk for 6 wks but being that i am scared of meds I opted for the 1000 iu per day dosage without a prescription.  I think now I should have listened to the doc and took the larger dosage.  Does anyone have any REAL idea of what the normal level of vitamin d should be for someone over the age of 40?  I don't think 32 as I have previously heard is accurate this day in time.  I read that is an outdated number.  The 1000 iu per day hasn't helped me much.  Will await your comments.....hopefully.  Thank you!!!

[Weesy68]

I have tried the teabag trick and it works!! But the trick is to use chamomile teabags.  Chamomile is a natural anti-inflammatory.  The other great thing you can do with teabags, haha is mop your wood floors.  Teabags are great for wood floors believe it or not and my floors look so good after I do it.  

I haven't noticed a huge difference from using the vitamin D, but I should say I'm also on Chromagen Forte so I'm not sure.  I do believe there is a huge difference in using the Chromagen.  I was so miserable due to low vit D and low/normal ferritin (18) that I remember thinking if I don't wake up when I go to sleep, I'm not sure I'll care.  That's how bad I was before taking both of these vitamins.  Chromagen has iron, folic acid and vitamin b12. Seems like there is one more thing in there but I forget what it is.  Anyway, it's much more mild on the stomach then most over the counter iron pills which is why I prefer it, plus I think it's the folic acid that helps you absorb the iron.  My hair has improved since starting this too.  It's the first time I have seen baby hairs not just at the bangs but actually popping up in the middle of my scalp.  I've been complaining for years about my hair thinning and it's finally doing something.  Yay!  Look up low ferritin and hair on the internet.  You might be surprised.

[Barb249]

I don't know, all he told me was My vitamin D was 7.5 and gave me 50,000 iu's a week, I feel wonderful since I started taking it. I saw an orthopedic sergon for a few years due to low back problems, they are gone now. I understand that there is usually a reason why you are not absorbing the vitamins so I'm scheaduled for a colon check this next week.  I take the Vitamin D and a B12 shot.  I feel better now than I have since I was in my 20's

[Jennifer1987]

Apparently if you put a luke warm tea bag over them it helps..Was told that agea ago by the mother of a girl with hypo in my village! Never tried it though!!! Be my guest and let me know if it works LOL......

[Sonflower]

Wow, you have the dark circles too!

This is very interesting, water retention, huh?  

My eyes have been a bit puffy now and then and even more so lately!

So yeah, what can one do about it, how do we get rid of it...

Thanks for the tip;  Sonflower

[Jennifer1987]

Was watching an American live chat show,called dctors I think...It was real doctors answering questions and a person aked the same question as you... bout the darkness under the eyes and he said its water retention! I was shocked cause Iv the dark circles under my eyes to!! Now I think I know why!!! sooo now how to get rid of them LOL....

[Sonflower]

I have been dark under my eyes for a few year...  now after a complete Thyroidectomy and partial Parathyroidectomy my eyes are even darker!

Does anyone know what would cause this?

Lack of ????  vitamin or minerals or ????

[Sonflower]

Just had labs done yesterday for...  D 25 - Hydroxy, is this the D you are asking about?

[ChitChatNine]

I start my Vit D pills today.   My retest still showed 9 .. so it is accurate.  Seems since I had an early melanoma removed I don't stay out in the sun as much and use higher SPF sunscreen so they think this is the reason why since all other tests thankfully are A-OK!

Great poll!

C~

[Sheilathatsme]

Yes, I have mine tested regularly and its always below normal. Last time I was a 19. The time before that a 7. I live in the south and still have problems. People should also be aware that statins for cholesterol control can block the absorption of fat soluble vitamins-A,D,E, and K. Always check on the medications you are taking. Remember, You are your best advocate and health watcher.

[Billydude]

I also have Sjogrens and Celicac Disease.  I had mine checked by my request and it was very low and now I'm taking Vitamin D.  

[jason80]

My blood work showed I was low on Vit D so I was put on supplements. Several months later I was retested and I was lower than average, but still in the normal range (taking about 1g per day supplement). It hasn't improved my symptoms any unfortunately.