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Vitamin D was 110

Just been to the doc about various things.  Whilst in there, asked for my Vitamin D result.

It was 110, which of course the doctor, relying on the archaic NHS guidelines, thought was excellent!

But that was with daily supplements.  What on earth would it have been if I didn't take them, I wonder?

I have a feeling it's still below the level indicated for MSers, by the latest research.  Can anyone refresh my memory please?

I know there's a post about it, but as usual, I tried search, but it doesn't really work...

Tina

 

Hi Tina,

 

Mine originally was 51.9 - low for someone suffering osteoporosis, back in August of last year, also low for msers too.  Ive been told down the grapevine that msers should be 75+ and people with bone problems 100+ so I would say yours is excellent. 

 

Think its maintaining those levels.  I want to know when to leave my supplements alone - when there is lots of sunshine etc?

 

Im going to ask for current reading as I had blood test in January and cannot find out the level until I see osteo consult on Monday.

 

bren

x

Hi Bren,

Sorry, but I have a feeling you're citing the standard (i.e. out-of-date) NHS guidelines, and that the latest research suggests MSers (and indeed, most people) should have much higher levels for optimal health.

That's why I'm querying it.  110 may well be "excellent", according to advice formulated some years ago, but never updated.  But I'm not sure the very latest research would support that.

(51.9 is definitely very low, by whichever advice you choose to follow!)

Tina

x

Yes, you are right Tina. Our levels need to be 150/225 according to my vitamin d books and Jelineks.

So keep taking the tablets!!!!

F.

Thanks F, thought so!

Crikey, I wonder what my levels would have been without supplements? I’ve been out in the sun quite a lot lately, too. Well, not that “lately”, as it’s been bucketing all week, but I’m quite tanned, for the time of year.

I did tell the doc that’s my level with supplements. I thought, if it was high enough, I might be able to drop them, but I’m now wondering if I should be taking more.

On the positive side, my GP didn’t agree with my neuro about cutting down Baclofen (I do take a lot, but I have a feeling neuro will have the last word, though).

She said: “But you are very conservative with your meds: you won’t take stuff unless it’s having a positive benefit!”

“But neuro thinks it’s making me tired…”

“You were tired BEFORE you started taking it!”

“Hmmm. Thank you. That’s what I thought, too.”

T.

Tina - if you have a good look on the internet you might be able to find what the approximate conversion is from iu intake to nmol/l in the blood. I managed to find a paper with it a couple of years back when my first blood test came back much lower than expected, but I didn't save a copy and can't remember what it was (doh!), but I know the info is out there! If you can find it, you can work out how much extra you need to take to get your levels up to where you want them.

Kx

 

Hi Tina

This is the info that Rizzo gave me in Mach this year.  Hope it helps.

According to http//www.vitamincouncil.org/about-ditamin-d/how-to-get-your-vitamin-d.

Healthy children under 1 year -1,000iu

Healthy children over 1 year - 1000iu per every 25lb of body weight

Healthy adults and addolescents at least 5,000iu

pregnant and lactating mothers - at least 6,000iu.

 

My level at the time was 140 which was not too bad.  Should be 150-225.  I was told this was ok by ms nurse but i decided to take 5000iu anyway as it was still a bit low for us msers!  I give my kids vit d3 also.

I hope this is helpful.

Teresa. x

Thanks Teresa,

I know many here are on 5000 or more, which is a lot more than I currently take.

Then again, my levels are not that terrible, considering I'm not taking these high doses, so I might not need to tweak it by very much.

When I have more time, I'll try to find the equation Karen mentions, that converts dose into blood levels.  I don't want to be short, but I don't want to take massively more than necessary, either (not just because of possible unforeseen health consequences, but because it's expensive to keep taking more than you need), so I think some research and a calculator are called for...

I'm glad I asked for the test.  I'm still in the "could do better" category, but at least it wasn't scarily low.  It's nice to have some idea.

Tina

Hello again Tina,

forgot to say that in the summer i will lower my dose to 1000iu and get some lovely sunshine.  My health is always worse in the winter and thats why i decided on the 5000iu for those months.

Teresa. x

Hi Teresa,

Yes - nearly all my relapses - certainly the more pronounced ones - have been January/February time, so definitely a pattern there. Corresponds with the time natural Vitamin D is presumably at its lowest, after many long months without sun.

I feel I’m better in the Summer months, even though I’m not a very outdoor-oriented person. I always start getting misgivings in about October: wondering if I’ll survive another Winter without anything serious happening.

T.

x

l don't think we shall ever get enough sun exposure in this country to absorb enough vit d3 - and as it is so important to us l think we need to keep taking it all year round. When the sun is out you do need to expose as much as poss - face/arms is not  enough. And after 15mins you stop absorbing the rays - you then start burning.

l had a email from vitaminworld - saying that they had done trials on women with pmt - and painful periods. They were giving women - in the trial - a massive dose in one go monthly - with great success. But the levels were very high - l will look it up - and see if l can find out how to judge your dose. But latest evidence does point that you would find it very hard to overdose with d3 - unlike calcium - which is dangerous to overdose.

F.

Thanks Campion!  Didn't start the 5000iu till march.  Perhaps i should just keep taking it if there are no side effects/long term probs of having too much!  i was taking 1000iu before Rizzo gave me the info.

My level was 140 in September.  It would be good to have regular checks but even my neuro questioned why i wanted it done!  and i would feel silly to ask for it to be done again so soon!

Teresa. x

Teresa,

          You have done well to get to 140nmols - even after taking 20.000ius daily for 18months l am still much lower then that.

F.

Hi everyone. I have just ordered some vit D3 10,000 iu from Amazon this morning.

I have never had a vit D test so I have no idea what my levels are. My GP looked at me like I had 2 heads when I asked for one a couple of years ago so I am surprised you have managed to get one. You have an understanding GP.

I first started taking vit D3 last year after reading how beneficial it is to those with MS and I was using 5,000 iu but recently decided to up it to 10,000 iu because of increasing relapses.

Should I ask my GP if I can have a test now? I must admit I felt an idiot when I first asked for one and got turned down.

Hi Hyder,

Little trick (I’m not saying you’ll get away with it): I didn’t ask my GP. I needed a blood test for something else anyway, so while I was there, I asked the nurse!

She said: “Of course! Why not? I’m taking the blood anyway…”

I didn’t deliberately bypass my GP. It was more of a spur-of-the-moment thing. I thought: “I’m in here getting my blood taken; why not just ask?”

Worked fine! GP didn’t seem put out about it.

Tina

x

Hi Tina

I was diagnosed with MS in Oct last year & my MC cons advised me to start taking 5000iu vit d3 straight away.

Co-incidentally, whilst trying to determine what was up with me before I was diagnosed, my GP ordered various blood tests which showed my calcium level was low. She then checked my D3 levels and my D3 count was 56, which I was told was 'within normal levels...'.

After reading up on D3, I decided to take 10,000iu daily and have been doing so for the last 5 months. I'm going to request another D3 test and see what my levels are now, so I'll let you know.

 

Hyder - There's been a lot of media coverage recently about the benefit of D3 to everyone, not just MSers, so you may find your GP has a different attitude now if you ask for a D3 test and explain why you want it. If they still say no, I'd seriously think about changing GPs.