Information re Vit D 3 Folks may find this intere... - PMRGCAuk

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Information re Vit D 3 Folks may find this interesting/helpful

sennetta profile image
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youtube.com/watch?v=fbGug3r...

youtube.com/watch?v=V5g9AVq...

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11 Replies
Judyliz profile image
Judyliz

Brilliant video, really easy to understand, many thanks.

Mamamia21 profile image
Mamamia21

Great video... just going to check out my vitamin D levels from other blood tests to see what my levels are... interesting about ADCAL might just be dropping that in future...

Griggser profile image
Griggser

Very interesting and informative. Very well explained and easy to understand thanks for posting.

pinks33 profile image
pinks33

I've just listened to a couple of his videos, and have found the results from the Tubingen study very interesting. But it's always troubling when a study from a reputable source like this contradicts government guidelines. I believe DrJohn Campbell is not a medical doctor, but a PhD and a nurse, and he does remind us that medics tend to be guideline driven when it comes to vit D recommendations. Still, I do think that what he has to say makes sense. But recently I had an episode of atrial fibrillation, and after consulting Dr Google had the opposite fear that my D3 levels may be too high. I have been taking Evacal D3 and topping up with 2000 iu Vit D3 plus Vit K2 75iug. Has anyone any experience of a link between high vit D serum levels and heart problems?

PMRpro profile image
PMRproAmbassador in reply to pinks33

How high IS your vit D? However - the link between a/f and vit D is that vit D deficiency - not high vit D - appears to be a risk factor. Certainly my paroxysmal a/f started about the same time as PMR and at the time my vit D level was very low.

ncbi.nlm.nih.gov/pmc/articl...

If you want to know why a reputable study like this is ignored in the UK, then look at the source. It is very common for things acceepted and followed outside the UK and USA to be ignored, even if it was written in English.

pinks33 profile image
pinks33 in reply to PMRpro

As always, you find contradictory studies on most things, e.g. eurekalert.org/news-release.... I don't know if my Vit D levels are high - they may even be low. I don't recall ever being tested for it. But I have a tele appointment with my GP next week about AF, and will ask for it then. Dr Campbell mentioned in the video that GPs don't like to do such tests as they are expensive, so fingers crossed. Would you agree that Tubingen is a reputable source? Dr C also mentioned that our bodies find ther own level, which may limit any risk in taking high doses of a vit d3 supplement?

PMRpro profile image
PMRproAmbassador in reply to pinks33

I think Tubingen is as reliable as any other university. If Campbell is suggesting that the vit D test is expensive he hasn't informed himself. He is right that many GPs CLAIM it is expensive - one told my friend £200! It isn't really. The NHS lab in the Midlands that does a lot of NHS vit D tests charges everyone much the same, well under £30:

vitamindtest.org.uk/

Not sure about finding the body's own level - vit D is, like vit A, fat soluble. Over time it could mount up to concerning levels as it is stored in the fat deposits. However, that generally happens with long term doses of the sort used short term to redress deficiency, i.e. 60,000 IU per week over 8-10 weeks is fine and unlikely to cause problems. However taking that dose over months or even years as some people do is not.

The study you highlight is 11 years old - done at a point where vit D was still being regarded as something of a bogeyman. The excessive levels they indicate are in excess of 100ng/dl, equivalent to 250 nmol/L - which are exceptionally high and you would need to be taking a LOT of vit D or to have an underlying illness such as sarcoidosis which leads to abnormal processing of vit D. Many people think that if a given dose of a supplement is good for you, taking multiples of that dose is better - not the case at all. If you get your levels checked be careful to note the units used in quoting the results and there is a 2.5 factor difference between them.

AyJayBass profile image
AyJayBass

Dr Campbell has been producing excellent videos like this for quite a while, I watched many of them in the early months of Covid last year.

This video is very pertinent to us. I have only had one blood test where Vit D was checked, this was last June, and the result was 100.7 nmol/l which looks pretty good in the light of this paper. I had been taking 35mcg a day for several months before this but dropped this to 20mcg when I started Calichew D3 back in March. One Calichew contains 10mcg and I have been adding a further 10mcg. I'm going to increase this now, particularly as we are now in winter.

My DEXA scan results in July were good. So, do I continue with daily Calcichews??? I'm inclined to cut back to 4 a week instead of 7.

PMRpro profile image
PMRproAmbassador in reply to AyJayBass

I no longer use the calcium supplements - eat more cheese instead ;) I did find that they caused cystitis symptoms - not always infections but more irritation, probably due to calcium grit forming in the kidneys. A few people found they ended up with similar problems - psuedogout and gallstones as well.

Bonnie-ma profile image
Bonnie-ma in reply to PMRpro

Agree wholeheartedly with your comment about calcium. I formed huge amounts of grit in my gall bladder and had to have it removed. My surgeon asked me if I took calcium supplements but would not say more. Don’t touch it now - just lots of calcium via diet.

Predsharer profile image
Predsharer

This is a very interesting video and although related to Covid mainly, it is very pertinent to all autoimmune conditions. My vitamin D levels were so low when I was diagnosed with PMR and I have struggled to get them up, even with supplements. The reference to ADCAL was interesting. I stopped taking it when I read up on Calcium and Calcium supplements and realised that there was an inadequate supply of Vitamin D in it.My GP is really good at doing blood tests for vitamin D and after my last one gave me the high Vit D (25,000 iu) weekly oral solution, even though mine wasn’t so bad. I am fortunate in that my GP is very interested in the research regarding Vit D.

The interesting point made in this video concerns the fact that more vitamin D prescribing will not be financially beneficial for anyone making and selling it!

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