Thanks Pat. I’m having Pizza tonight with a couple of glasses of red. I’m sure there must be a bit of vit D in the wine !?
Hi all I had been taking 15,000 iU vitamin d3 a day for several years (yes I do mean 15,000 iU, don’t like to do things by halves). When I finally got a blood test, my levels were 437 nmol/L (hope I remembered units correctly). Recommendation is that you should be around 100 to 120. I was really scared by this and wondered whether my MS symptoms were coming from having super high vitamin D. When I finally found a doctor who would say what a good level was (my lovely neuro) he said you have to get up somewhere above 700 nmol/L for toxicity. At least one study has been testing whether levels higher than mine were beneficial for people with MS. I have taken less vit d3 since. Also, has someone said you need to make sure you have recommended amount of calcium in your diet if you are taking large amounts of vit d3. Otherwise you can get calcium leeching out of your bones (leading to osteoporosis)
Hi Sewingchic, yep Rizzo posted on EL a few weeks back that she has been found too high in vit D3 and has been suffering weakness etc as a result. She was taking 5,000 iu one day and 10,000 iu the next.
I think it’s a bit too easy to be laid back about it and think it’s only a vitamin when actually it’s a hormone & yes there is the calcium problem too.
But be interesting to see if you notice a difference by lowering amount as you have been taking huge amount. I felt unwell on 5,000 iu daily… but maybe ‘negative placebo’… I have made that up but I’m sure it must exist.
Pat x
No, have deteriorated on high doses of vit D3, on none, on LDN and on that really extreme diet (no gluten, no saturated fat, no dairy, no pulses). One of these days I’m going to find the thing that stops me deteriorating.
Well hon I admire your huge attempts to find something that helps.
But sorry that so far you haven’t found anything that works… but you could think that you might have deteriorated more without these things? Impossible to know of course but well done you for trying so hard… especially the diet which I think takes huge will power. On my bad fatigue days my body craves sugar & carbohydrates. I think it must be the body looking for a quick ‘energy fix’ even though in reality it doesn’t work.
Pat x
Pat, I am not dx but was feeling bad till I started 10,000 a few days ago I feel so much better now, I have actuallly been doing some cleaning and tydying which I have not even attemted since before xmas and I am usually houseproud.
Maybe it’s the placebo effect Sally, as it will probably take a month or two before you feel the benefit! Teresa xx
i also stopped taking vitamin d, i started on 5,000 iu but they made me feel quite ill so stopped taking them,feel better without.
jaki xx
I was told by a consultant to up my D3 dose to between 5000 and 10000. I have asked my GP for advice and am worried re calcium content as some recent finding suggest high calcium can cause deposits in the brain and Alzheimer connection! I don’t need any more problems,MS and pernisious anaemia are enough.
Hi Aggipop, it’s very interesting reading this thread as I’d forgotten all about initially feeling worse with Vit d3!
I now take 5000 iu a day and have done for a few years. I haven’t noticed any huge difference, positive or negative, but I have noticed that I have fewer meltdowns (you know…when it feels like someone has pulled the plug out & you can’t move or talk).
I think it possibly Vit D3 that helped with that. It’s important to be tested regularly to make sure your levels aren’t too high as it can cause problems if too high. Someone on here has now got a kidney stone which doctor thinks was caused by high dose Vit D3 and she’s lowered the amount she was taking (was on 5000 iu daily).
As far as I know nobody on here on high dose (and I think there’s quite a few who are) have had problems with calcium…although maybe that’s what forms a kidney stone? I don’t know.
Generally I think it’s worth trying although I think 5000 iu is enough. I personally wouldn’t go higher.
Hope this helps,
Pat xx
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I had a blood test to test for vit D deficiency and was glad to see my levels were right, has anyone had this test, you may find you dont need to take them?
I am looking into having a B12 test too today, has anyone found this beneficial?
have a good day all, Id realy like to get to know you all
its a gloomy one here in the South :(( xx
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I recently took a blood test which showed my vit D level was high (I take 5000 a day) the B12 test also showed I had high levels … my nurse told me to keep on with the D and leave off on the B12 … which is what I am doing …can’t know if/what does what …who knows …sun is almost out …great… more Vit D!
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