Author Topic: Low Vitamin D Level: What does it mean?  (Read 9605 times)

Gail

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Low Vitamin D Level: What does it mean?
« on: September 29, 2009, 11:31:26 AM »
Hi, everybody,

I had an appointment with a Rheumatologist a week ago. They did some blood work. Today I had a phone call from his nurse, and she left a message that my vitamin D level is low. She said that I need to take a vitamin D supplement. This is the first thing that they found abnormal with me, and I am kind of glad that they found at least something. What does it mean, anyway, the low vitamin D level?

If somebody is taking vitamin D supplement, what kind of dasage are you taking? Did it help with the fatigue and muscle pain?

Waiting for your responses,
Gail.

Epson

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Re: Low Vitamin D Level: What does it mean?
« Reply #1 on: September 29, 2009, 11:51:09 AM »
The doctors have all told me that the low VD is due to a lack of sun, makes sense since, I can't be out in the sun very much.  I take 800 I.U of D with calcium every day and have felt no change since doing that, but I'm up to the lowest number of the normal scale, which is a great improvement.

HL in NY

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Re: Low Vitamin D Level: What does it mean?
« Reply #2 on: September 29, 2009, 11:58:31 AM »
I've heard that people with AI disorders can often have difficulty absorbing vit. D, which is why our numbers are frequently low.

I was just tested and came out with a 28, which is just below the 'normal' low of 30. I take 2000 I.U.'s of Vit D a day, but being my number was low, my Rhuemy gave me a short run of supper-supplements of 50,000 I.U.'s to take twice a week for two weeks.

I suspect your doctor while probably give you some prescription supplements to get your level up.

Gail

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Re: Low Vitamin D Level: What does it mean?
« Reply #3 on: September 29, 2009, 12:49:57 PM »
My vitamin D level is 20,4. That is what the nurse said. She also said that the doctor recommended to take the proscription vitamin D 50,000 UI. I asked her if it can could cause any side effects and she said it can cause some nausea. I also mentioned that I am a very sensitive to any meds, and she asked the doc about it and told me just to take over the counter vitamin D supplement 800 UI a day in addition to my multivitamin that already contains 400 UI of vitamin D.

I am just curious if anybody notice any difference it their fatigue level and muscles pain? Did you improve somehow or not.

I am curious because the low vitamin D level is only what they found abnormal with me.

I have variety of symptoms ranging from fatigue, lightheadedness, muscle and joint pain to insomnia and depression.

I also found on the Internet that the low vitamin D can cause some of these symptoms.

So, did you notice any improvement?

Let me know,
Gail.

karenboss

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Re: Low Vitamin D Level: What does it mean?
« Reply #4 on: September 29, 2009, 01:42:28 PM »
My levels were very low too and once corrected with the 50,000 unit Rx I felt a world better.  I don't feel that terrible tired like I did then.

it did nothing for lightheadness, I still struggle with this.  Joint pain is being resloved with other meds.

I have sjogren's and lupus -

HL in NY

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Re: Low Vitamin D Level: What does it mean?
« Reply #5 on: September 29, 2009, 02:27:08 PM »
Gail: I've been taking the prescription dose with no side effects at all. It's one small capsule that you take either once or twice a week.

I do feel 'better' but I can't say specifically what feels better- I still have some joint pain, and some fatigue, but I do think it's helped.

If I were you, I'd get a one or two dose script and try it. If it makes you feel poorly, you're not out a huge amount, and if it works, it might help you quite a bit, especially since you seem to have trouble taking the traditional meds most of us are on.

kim31072

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Re: Low Vitamin D Level: What does it mean?
« Reply #6 on: October 02, 2009, 06:55:34 AM »
Mine manifested as horrendous pain in the lower parts of my legs and nothing(baths,massage,staying off,elevating,pain meds,heat,ice,anything :D)would relieve this ....thats when mine was found.I have been on the 50000 iu for three months and will be retested in another three.

I have the once a week pill and have never had any neg issues or side effects.The first few weeks after dosing I would get a few days when the legs would just feel normal it was awesome..now I dont get but maybe one or two every other dose or so..dont know if that reaction was psychosomatic as I knew what the pill was for and perhaps my head made them feel better but either way it was a relief to just say they feel like legs...just legs.Please make sure not to over do the vit d as it is not excreted but is fat stored and toxicity is possible and dr says that toxicity pain is worse than the pain of the deficiency.I was a 17.

kim

Patze

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Re: Low Vitamin D Level: What does it mean?
« Reply #7 on: October 04, 2009, 07:49:29 AM »
Hi Gail,

Nope, don't seem to have many problems with 50,000 units of Vitamin D, just have problems keeping the level up.  I also seem to feel better for a week or so, and then it seems to wear off - ugh.


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Martin78

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Re: Low Vitamin D Level: What does it mean?
« Reply #8 on: October 06, 2009, 03:31:38 PM »
Low 025D levels are normal in Autoimmune conditions, however the 025D is NOT the active metabolite that docks into the Vitamin D Receptor. (the version of vitamin D that body actually uses, 025D is just a "storage form"...

You have to measure the 1,25D ( And I bet you all have quite high levels of that one) to see if you are vitamin D "deficient".

Many papers are published regarding the role of vitamin D (which actually is a hormone not a vitamin) and autoimmune diseases.

http://www.ncbi.nlm.nih.gov/pubmed/19758177


or you can check www.bacteriality.com

Good luck
Br
Martin
« Last Edit: October 06, 2009, 03:33:32 PM by Martin78 »

Patze

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Re: Low Vitamin D Level: What does it mean?
« Reply #9 on: October 07, 2009, 08:25:06 AM »
Hi Martin,

Just my little ol' humble opinion only (for what ever it's worth, and I'm not in the medical field), I still think that a lot more testing needs to be done before the medical community can put it all together for Vitamin D.  Hopefully one of our more knowledgeable members will stop by soon to shed some more light on this discussion.

I've read the article and it's interesting, I wonder when if it will become standard practice to test 1,25D instead of the 25D?

Take care -

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Linda196

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Re: Low Vitamin D Level: What does it mean?
« Reply #10 on: October 07, 2009, 08:46:36 AM »
Things are moving toward standardizing the tests, and Total 25-hydroxyvitamin D (D2 + D3) is the currently considered to be the correct measure of Vitamin D status. Unfortunately the standards for deficiency have yet to be established, and they will vary greatly based on a number of things from time of year to complexion...both those things, and many others, have an affect on how Vitamin D is absorbed and metabolized. Having said that, my doctors always test both, at lease for me, possibly because I also have sarcoidosis.

The two tests are used in different circumstances...low blood levels of 25-hydroxyvitamin D may mean that you are not getting enough exposure to sunlight or enough dietary vitamin D to meet your body's demand or that there is a problem with its absorption from the intestines; low levels of 1,25-dihydroxyvitamin D can be seen in kidney disease and are one of the earliest changes to occur in persons with early kidney failure, possibly indicating that the amount coming in is sufficient, but it's being excreted abnormally quickly or not being metabolized properly.

Some disease processes (parathyroid issues, sarcoidosis, lymphomas) can cause increased calcium levels or excess production of 1,25-dihydroxyvitamin D.

There is also a complex "balancing act" of different components that can change the Vitamin D levels...calcium, magnesium, and the actual vitamin are all dependant on each other, and in some cases, it's actually possible to increase Vitamin D levels with magnesium or calcium, not the actual hormone.

There are a lot of variables, and it's most definitely an area that needs more research.
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autumn77

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Re: Low Vitamin D Level: What does it mean?
« Reply #11 on: April 08, 2010, 12:44:14 PM »
I also suffer from fatigue, muscle pains, and back pain. I have been diagnosed with fibromyalgia. I have had low vitamin d levels .. Did last year and they came back up. But now they are low again. My vit. d level is 17. I take 50000 IU of vit d once a week for the next 4 weeks. Then go back in for more bloodwork. I do believe that low vitamin d will cause fatigue. My dr. has not told me that but the two times, I have had low vit. d I have felt totally run down.

Suzy

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Re: Low Vitamin D Level: What does it mean?
« Reply #12 on: April 08, 2010, 12:58:54 PM »
My vitamin D was 19 so I started the 50,000mg 1x per week and it was up to 44 after 2 doses. Didn't notice a bit of difference in how I felt, but didn't have any adverse side effects either.

Thanks all for the in-depth info. I knew there was a connection to AI disease but didn't know why.
I'm a 37-year-old stay-at-home mom to two little boys ages 8yrs and 4yrs.

Sjogren's DX '97, Raynaud's, Superficial Parotidectomy, Cholestasis of Pregnancy, Gilbert's, Vasculitis, Fibro, B12 & D Deficiency, Drug Allergies

Plaquenil, Lyrica, Rituxan, Vit D, B-Complex, Biotin, Calcium, Soothe XP

Patze

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Re: Low Vitamin D Level: What does it mean?
« Reply #13 on: April 08, 2010, 09:02:59 PM »
Hi Autumn77,

Let me welcome you to the SJS World and family.  Please continue looking around as there tons of topics that you just might find interesting, like this one.  When you have a minute, can you tell us a bit more about you so the members can get to know you better?

Oh yes, I know what you mean about having a low vitamin D level, mine is currently at 15, and the rheumy just freaked.  I usually take a 50,000 once a month, but my level always seems to fall, can't seem to keep it up for long, and it's back to taking it once a week too, ugh. 

Again, welcome, and I hope to chat with you soon.

Take care of yourself -

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jessica1104

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Re: Low Vitamin D Level: What does it mean?
« Reply #14 on: April 12, 2010, 10:14:55 PM »
My calcium and vitamin D were low when I went to the rheumy this last visit too.