Anybody else vitamin D deficient from lack of sun?

[weedhopper]

Found out yesterday I'm quite low in the vit D dept. Dr. says my test for it came back a 17, and that the low end of normal is 30. So I'm on weekly 40,000 units of Vit. D for 16 weeks to hopefully bring it back up, along with an over the counter supplement of 1000 units daily. Just thought it was odd, as its something I've never really given much thought to I guess. The dr. said its not that unusual given that I'm so photosensitive and therefor avoid the sun. Made me wonder how many others have low Vit. D levels as well.:) Take care everybody.

[Raglet]

yup, I am on a regular vit D supplement prescribed by my rheumie (calcetrol) along with my calcium and etidronate to build my bones. I was given a intensive dose originally to bring my levels up, and now I just take one a month

raglet

[fenrus]

with the prednisone eating away at our bone density, it's probably good idea for everyone to be on calcium and vitamin D supplements.

ask your doctor first of course.

[Joandublin]

Hi Christie:)

I also take Vitamin C and D as well - prescribed by my rheumy along with the steroids, but interestingly I was contacted recently by my hospital to take part in a study commissioned by the hospital into Vitamin D levels in Lupus patients. They want to see if lack of sun exposure is causing any deficiences. I had a specific Vitamin D level test (they had to take the phial out of the freezer for this test for some reason??). Anyway I get the results next Thursday so I will let you know. I dont expect them to be out of range though because I am on the supplement since last November.:)

How are you doing generally?

Take care
Luv n stuff
Joan:rose:

[Sleaps2much]

Yeah! My endo called himself and said, "Your Vit D levels are so low they are usually seen in those with rickets, have you been forgetting your Vit D suppliments?"

...Busted!!!

Sleaps

[Raglet]

btw, I don't think it is necessarily lack of sun that gives us low vit d levels - I am not particularly sun sensitive, and usually end up with a tan in summer though I try not to (skin cancer risk more than lupus as I live in a very ozone depleted zone), but I am still very low on vit d. So while lack of sun may do it for some people, it must be more than sun exposure that does it, else I wouldn't have such low levels

cheers

raglet

[Lily]

Hi,

I agree that there are many reasons why you can be Vitamin D deficient. Mine was discovered early on in my diagnostic process, and I wasnt really avoiding the sun much then, as I didnt know what the heck I had. It was really really low. My Immunologist/Lupus doc gave me supplements of 1,000iu daily for 6 months. He repeated the bloods after 2 months and they were improving. By 6 months on it I was ok and have never had to take it again (my levels remain stable and within range). And yet I have changed nothing except I get far less sun exposure now because I am very photosensitive. I am allergic to fish and eggs though but find I get enough from milk and the tiny amount of sun exposure I do get.

If you look up the archives and previous posts we have had a lot of times where this has been discussed. It can come about from parathyroid problems, stomach problems, kidney problems, liver problems, a whole host of things. If they think there is an underlying cause its a good idea to try and see why if possible. Especially if it involves parathyroids etc. and especially as Vitamin D is so important to our immune systems. It fights against cancer and is also thought to help those with AI diseases, especially things like MS, they quite often are low in Vitamin D.

Most of us get enough sun exposure and eat enough egg, fish and milk products to provide us with plenty of Vitamin D. But people in cold cloudy climates who dont have much Vitamin D in their diet may be deficient. Likewise those who have a condition which may affect their absorption or production of Vitamin D.

love
Lily

[caper]

Does anyone know if there is any risk in taking a vit D supplement even for those of us who do not have lab results to show low levels? It would seem like a good idea to take some as a preventative.

[Ruby Tsang Cheung]

I'm also vitamin d deficient, and also low on calcium. My lab showed me at 12 and yes, it's suppose to be 30. So I'm doing what everybody else is doing...taking supplements and back on women's multiple vitamins. I also avoid the sun and my rheum dr said it's because lack of sun. So I just follow her advice. Good luck all.
Ruby

[Lily]

Hi caper,

I'd see what your doc has to say about it first. Those on Prednisone long term or high doses should always take calcium and the vitamin D seems to help with that and osteoporosis prevention. But because Vitamin D is a fat soluble vitamin (i.e. is stored and not excreted as readily as water soluble ones) then its possible to suffer Vitamin D toxicity which can lead to all sorts of problems.

I have no idea if the amount of Vit D in a multi-vitamin would cause a problem, I'd say not but then I'm not doc and everyone is an individual. Guess it depends on how well your organs are working and a host of other stuff.

So far I seem to do ok without it and my last bone density scan was great. So I know for me its not necessary now I've corrected the deficiency. Best to check for yourself though.

love
Lily

[JoD]

My Vit D level is 6. My parathryoid levels are high at 175.
Am on 50,000 IU vitamin D once a week plus 400 units daily.
My mom was discovered to have the vit D deficiency first and she is outside on a regular basis in Sunny California. She also has high parathyroid levels as well as very low magnesium levels. She has rheumatory arthritis and diabetes but not lupus.

[Lily]

Hi JoD,

If Vitamin D levels are really low then PTH is often high, the calcium is often low as well. PTH rises to try and make more calcium. However someone with
hyperparathryoidism often have problems like pain in limbs, osteoporosis and kidney stones, because they have a high calcium level in their blood (its been leached out of their bones due to the overactivity of the parathyroids).

I wonder if there is some genetic component there to your deficiency, seeing as your mother has it also. Some people inherit a faulty vitamin D receptor and cant convert it to its active form?
Are you having Vitamin D intravenously every week? Is that what you meant with the 50,000? and then you also take 400iu daily?

How was your calcium level JoD? Mine was within range, so was the PTH strangely enough. Vitamin D was 2 when lowest normal was 32 or something. I'm fine now though and they arent sure why I had a vitamin D deficiency. Weird..............

Its something that interests me this subject because of the link with Vitamin D, the sun and kidneys. Also the link that low Vitamin D can lead to all sorts of diseases states like autoimmune or cancer by way of examples.
love
Lily

[Lily]

Hi,

For anyone who wants to read further this covers a lot on Vitamin D:

http://lpi.oregonstate.edu/infocenter/vitamins/vitaminD/

http://www.merck.com/mmhe/sec12/ch154/ch154c.html

love
Lily

[weedhopper]

Wow, this is interesting. Thanks Lily and everybody for all the information on this. :wink2: :)

[JoD]

Hi JoD,

I wonder if there is some genetic component there to your deficiency, seeing as your mother has it also. Some people inherit a faulty vitamin D receptor and cant convert it to its active form?
Are you having Vitamin D intravenously every week? Is that what you meant with the 50,000? and then you also take 400iu daily?

How was your calcium level JoD? Mine was within range, so was the PTH strangely enough. Vitamin D was 2 when lowest normal was 32 or something. I'm fine now though and they arent sure why I had a vitamin D deficiency. Weird..............



My Calcium was right in the middle normal. 50.000IU is taken in a pill form..required a 'script from the doc. My mom has to take it too but she is only taking it once a month rather than weekly. Both of us take 400 IU supplemental Vit D daily as well. I saw an endocrinologist. He ran tests for GI antibodies found in Celiac disease to make sure it wasn't a malabsorption problem...those are normal as well. I have some very mild chronic kidney disease as well as lung scarring from the lupus. The kidney disease is suppose to effect D levels as well. Tuesday I go for a 3 hour physical to see if I qualify for a clinical trial with Rituxin...hoping the ;low vit. D doesn't disqualify me. If I pass the physical my first infusion will be a week later.
Joanne

[flowergarden]

One doc a few years ago discovered I had low levels of Ca and albumin (usually go together) and high levels of parathyroid (also usually accompanies the low Ca). I had low levels of Vit D. He prescribed 100,000 IU's of the ergocalciferol form of vit. D once a week, as opposed to the cholecalciferol form found in most supplements. Apparently the latter is more toxic in large amounts.

He later reduced my dose to 50,000 IU's. I also take a certain type of Ca with cholecalciferol and vit. K.

My Ca levels have come up to just barely within the normal range, but my parathyroid is still a tad high. Just not enough to worry him. He's keeping close track of my labs.

I'm betting that the disease process itself has something to do with it. But I'm not putting much money on the table. :)

[Mariposa]

8) Hello everyone,

I also ended up having Osteoporosis; courtesy of the wonder drug Predisone :lol:.
I'm on Caltrate (Calcarb600 w/vitaminD) and Fosomax.:thumbs:

:huh: I was not or have been informed of any Vit D problems, but I think that because of my UVR sensitivity my oncologist/hematologist put me on Caltrate and on Folic Acid. According to hematologist, I'm no longer required to continue taking Folic acid and I do take my Caltrate twice a day.

Is anybody taking Folic Acid?:ermm: