Vitamin D: Hi all, I just wanted to share a wee... - LUPUS UK

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Vitamin D

Lucy74 profile image
15 Replies

Hi all,

I just wanted to share a wee success story for all of those photosensitive people out there, in case it helps anyone.

I was very Vit D deficient 3 winters ago, before I'd been diagnosed with SLE (it was actually one of the things that eventually led to my diagnosis). I've been photosensitive since I was 14, but no one had ever thought to mention I would become Vit D deficient, and I didn't know anything about it, until I found myself in that situation.

It was discovered 3 winters ago. An 'adequate' level of Vit D is above 50, and my level was less than7! So I'd probably been deficient for many years. So that first winter I got 3 Vit D injections, then the second winter I got 1 injection, and last winter I got none.

I've been taking supplements since then. They're natural supplements (based on mushrooms), and I had some criticism for that because they weren't pharmaceutical - it was thought they wouldn't be as effective. So I was curious as to whether they were working or not, so I asked to be tested again a few weeks ago (they wouldn't test me last year - they said it's only done every 2 years now because of cost). Anyway, my results are 114! I'm REALLY pleased! So my natural supplements are working, and I don't need to get injections, which made me feel a bit funny, so I'm glad about that.

A small victory, but I wanted to share in case it helps anyone else avoid having to get the injections this winter.

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Lucy74 profile image
Lucy74
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15 Replies

Its also suggested that people with poor immunity or asthma sufferers are regularly found to have low vitamin d levels and that their situation often improves as their viramin d level is raised to a more acceptable level

dgleds profile image
dgleds in reply to overnighthearingloss

People with hypothyroid stuff too, but no one ever checked me...I just read that somewhere, after being told I need big doses of vit D, after I was checked recently, cause Im suppose to have lupus now too... Doc forgot to phone me about it, but I could see my results online (im in BC, we can check our reults-hallalulah)....Boy! I remember when they use to tell u to be careful with vitamins A and D...could be toxic,..stuff sure changes.

Lucy74 profile image
Lucy74 in reply to dgleds

High levels of Vit D ARE toxic, but from what I've read, it would be very very very difficult to get yourself to that level and would probably only be as a result of repeated injections at too high a dose.

dgleds profile image
dgleds in reply to Lucy74

Not all that long ago, they use to say not to take over 400 Iu daily...

overnighthearingloss profile image
overnighthearingloss in reply to dgleds

Back in the 1920s the iu standard was introduced. Before that people apparently used to take vit d at much higher doses. Often in the form of cod liver oil which also contains vitamin A which is definitely toxic at higher levels.

I am not currently aware what my level is but know at the moment i feel better if i take a 5000iu supplement daily and if i am really run down 10000iu and the next day is usually easier.

I am not suggesting that others should do the same. I read quite a lot before deciding to do so and will stop if side effects appear.

But so far so good and if i miss taking for a few days it does seem that i succumb to tiredness and ills to a greater degree.

dgleds profile image
dgleds in reply to overnighthearingloss

the rhumetologist has me on 2,000 iu a day.....I was in shock at that amount....I wasn't super difficient (sp?) in it, just moderately...I was taking calcium with magnesium and vit D 400....I don't drink much milk...Oh well...surprise!!!

overnighthearingloss profile image
overnighthearingloss in reply to dgleds

Have been reading that if you are overweight you need more d3.

Not saying you are overweight, just relaying information. Also that you need to take it with a meal that contains fat. But preferably early in the day.

dgleds profile image
dgleds in reply to overnighthearingloss

all these things they keep coming up with...lol

overnighthearingloss profile image
overnighthearingloss in reply to dgleds

Much of the info surrounding vit d has been known but also unknown for years

foxglove profile image
foxglove

Would you kindly tell me what Vit. D (based on mushrooms ) that you take?. I would like to try a natural approach. Thanks

Lucy74 profile image
Lucy74 in reply to foxglove

Hi foxglove. The one I've been taking for the past few year is called Nature's Plus, Source of Life Garden Vitamin D3. It says on it 'organic gold standard whole food D3', and is gluten free and vegan.

foxglove profile image
foxglove in reply to Lucy74

Much thanks for this will investigate!

chrisj profile image
chrisj

So good to read about that Lucy and I wish you continued better health.

The rheumatologist suspected low vit D when I complained about muscle aches and pains, shortness of breath and no energy a couple of years ago. Tests showed levels were a bit low and that my body wasn't making vit D any more. I went to hospital for capsules over 4 months, couldn't take them at home, and then they put me on supplements which I've taken ever since..and I feel much better for them.

Natura profile image
Natura

Thanks Lucy for sharing. I take 5000 iu a day with Vit a . I read that I should take vitamin a with d. I feel a lot better. I use to quit every job I ever had In January prob due to vit d deficiency. I had a terrible time getting through even cloudy rainy days. I am able to get thru winter and rainy days without falling into severe melancholy. It works! Glad it works for others.

Natura profile image
Natura

I take vitamin a beta carotene....like in a carrot....piss out what you don't need, so you don't get toxic.

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