Vitamin D and Dementia: Vitamin D is a topic... - CLL Support

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Vitamin D and Dementia

bennevisplace profile image
16 Replies

Vitamin D is a topic that gets a regular airing on this forum. In the context of CLL, here is a good place to review past posts healthunlocked.com/cllsuppo... (reply by Lankisterguy).

Personally, the idea of dying with CLL just doesn't compare with my dread of living with dementia, aka going gaga. So my ears pricked up when listening to one of Dr Michael Mosley's recent "Just One Thing" radio shorts bbc.co.uk/sounds/play/m001v... (apologies to readers outside the UK) some of which covered vitamin D deficiency in the elderly and its link with dementia. There is some genetic evidence of a causal link, but the critical evidence, from a randomised clinical trial, has yet to be published.

I believe that the clinical trial in question is being carried out jointly at the universities of Exeter (UK) and Calgary (Canada). According to news.exeter.ac.uk/research/... quote:

The VitaMIND study is run via PROTECT protectstudy.org.uk/, an online study open to people aged 40 and over. In PROTECT annual questionnaires on detailed lifestyle factors combine with cognitive testing, to determine what keeps the brain sharp in later life. To find out more or to sign up, visit their website. In Canada, CAN-PROTECT can-protect.ca/ is a linked online study on aging, in people aged 40 and over, with an additional focus on caregiving in dementia.

Research already published alz-journals.onlinelibrary.... - described, though incorrectly referenced, in the above news article - found that taking vitamin D was associated with living dementia-free for longer, and they also found 40 per cent fewer dementia diagnoses in the group who took supplements...

While Vitamin D was effective in all groups, the team found that effects were significantly greater in females, compared to males. Similarly, effects were greater in people with normal cognition, compared to those who reported signs of mild cognitive impairment – changes to cognition which have been linked to a higher risk of dementia.

The effects of vitamin D were also significantly greater in people who did not carry the APOEe4 gene, known to present a higher risk for Alzheimer’s dementia, compared to non-carriers. The authors suggest that people who carry the APOEe4 gene absorb vitamin D better from their intestine, which might reduce the vitamin D supplementation effect. However, no blood levels were drawn to test this hypothesis.

Previous research has found that low levels of vitamin D are linked to higher dementia risk. Vitamin D is involved in the clearance of amyloid in the brain, the accumulation of which is one of the hallmarks of Alzheimer’s disease. Studies have also found that vitamin D may provide help to protect the brain against build-up of tau, another protein involved in the development of dementia.

Co-author Dr Byron Creese, at the University of Exeter, said: “Preventing dementia or even delaying its onset is vitally important given the growing numbers of people affected. The link with vitamin D in this study suggests that taking vitamin D supplements may be beneficial in preventing or delaying dementia, but we now need clinical trials to confirm whether this is really the case. The ongoing VitaMIND study at the University of Exeter is exploring this issue further by randomly assigning participants to either take vitamin D or placebo and examining changes in memory and thinking tests over time”.

So there you have it, for now. As well as being necessary for healthy bones, maintaining an adequate level of vitamin D may be one way of reducing your risk of developing dementia in the future.

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bennevisplace
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16 Replies
AussieNeil profile image
AussieNeilAdministrator

I've just completed my very rewarding involvement in a similar Australian study to the Protect Study. From your reference, “We know dementia risk can be reduced by one-third through improving lifestyle factors from midlife. This study will provide valuable information about how the brain changes with age, which combination of factors such as exercise and diet really work, and how we can best encourage people to adopt these changes.”

Given I plan on living out my normal life expectancy, I want to be mentally there to enjoy it!

The challenge with these observation studies, is separating out the confounding factors. Do people who do better, do so because their vitamin D serum level is higher than those who develop dementia, due to a causal influence, or is there simply a correlation due to other factors? Is it because they are more focused on looking after their health, by eating a more nutritious diet, exercising (and indirectly getting additional sunshine) , staying more mentally and socially active and so on?

Thst said, it's great to see this research being done, because more and more evidence is accruing that we can proactively significantly reduce our risk of developing dementia. I expect that the social interaction gained from being involved in this community, along with learning what we can to improve our health help in this regard.

I hope this Canadian/UK study achieves full registration and aids with the unravelling of how we can avoid developing dementia.

Neil

bennevisplace profile image
bennevisplace in reply to AussieNeil

Yes, as so often is the case, we await the outcome of the randomised clinical trial. Meanwhile, like you, I aim to do all I can to keep my marbles "till death us do part". Regular physical and mental activity, healthy eating, and (what's to lose?) vitamin D. After all, my dermatologist tells me to stay out of the sun 😏

cajunjeff profile image
cajunjeff

Benne, thx for correctly pointing out and underlying the fact that all the study really concludes is that vitamin D supplements may help with dementia. I credit the author for acknowledging clinical trials would be needed to prove this.

I don’t quarrel with the notion that we likely have many benefits from having adequate levels of vitamin D, or adequate levels of any vitamin for that matter. I think people with vitamin D deficiency should take supplements if they are unable to get their vitamin D from natural foods like fish, eggs and cheese.

My concern is articles like this may convince people who dont need supplements, to start taking them not knowing what dose to take, whether they might be doing harm by having excess vitamin D or, indeed, what’s really in some of these largely unregulated and unproved supplements.

I don’t know how much Dr Mobley’s endorsement helps. He’s really more of a writer and a seller than a doctor. He sells supplements on his website, a website that is controversial for advancing keto and fasting diets. Some people claim his harsh restriction of calories can cause some folks to have body insecurity leading to eating disorders.

I’m no expert and perfectly fine with anyone having a daily multivitamin. I dont think that would lead to too much of any vitamin. But I think before embarking on bulking up on vitamin D supplements, people who are concerned should ask their doctor to test their vitamin levels and prescribe supplement if needed. That said, I also doubt there is much risk in taking a vitamin pill a day. I take too many pills as it is to add more. :)

bennevisplace profile image
bennevisplace in reply to cajunjeff

Thanks for your comments Jeff. The first two paragraphs make perfect sense but after that you lost me. Where does Dr Mobley come into this?

I do agree, and I have sometimes advised members, it's a good idea to check your serum D levels before and after supplementing to make sure you're on track.

Sunlight and supplements are the only realistic ways to get enough vitamin D, because foods don't contain enough, and as we age we get less efficient at converting ingested D to the form our body uses. So old codgers confined to nursing homes need heavy supplementation with cholecalciferol (in the UK they typically get less than half of what they need). And people like me with a history of skin cancer may find D supplements a less risky alternative to sunbathing.

cajunjeff profile image
cajunjeff

Hello Benne. I am no expert on vitamin D. From what I have read, we can get in naturally from a lot of sources. I agree completely that anyone deficient in vitamin D should discuss with their doctor ways to get their vitamin D in normal ranges, even taking vitamin supplements.

Whether it be approved drugs like ibrutinib, or unregulated supplements, I confess to being a bit of a skeptic, however, my skepticism can be overcome with adequate proof.

When I was prescribed ibrutinib, for instance, I immediately wanted to know if it was a proven drug, or controversial. So in my amateurish way, I googled every study I could find. If it was a study funded by Jannsen, the manufacturer of ibrutinib, I would question if the study was biased, but not assume it was untrue. If the study was done by the National institute of health, I would give it more weight. If MD Anderson or the Mayo Clinic was running the study, I gave it more weight. I gave it less weight if it was from a small hospital. The fact ibrutinib performed well in a number of independent studies convinced me it was legit

It’s the same with supplements. If a celebrity doctor is endorsing a supplement, I wonder if the doctor is in the supplement business. It doesn’t mean his opinions are biased, it just raises a natural question of potential bias.

So the reason I brought Mosley into the conversation is that you mentioned him as bringing this study to attention. I didn’t know him. Since it’s a vitamin study, I wondered if this Moseley was an academic doctor who runs clinical trials, or one of these “doctors” who are media personalities.

As it turned out, it appears Mosley is more a personality and supplement/diet advice seller than a practicing doctor. That doesnt mean he might not be right, I lack the science background to know. It just makes me wonder as many doctors with controversial views can be in the supplement business.

Conversely, I googled the doctors running the study and saw noting controversial to suggest there was a potential underlying bias. For me, that added credibility to the study. The fact that as to their conclusions, they acknowledged this was still a working theory of sorts, added credibility as well. I would be less impressed by a study sponsored by Starbucks that concluded two cups of coffee a day prevents Alzheimer’s

I thought it was interesting info you posted. I am going to discuss with my doctor if I should be tested for vitamin deficiency, a question I might not have asked but for info I learned on this forum. I was just pointing out that Mosely has some controversial opinions and that his being in the supplement business can be relevant to giving weight to his opinions.

Shedman profile image
Shedman in reply to cajunjeff

Dietary sources.Fatty fish, eg. can of sardines provides 200iu

I avoid higher fish (salmon, swordfish, trout: ~600iu/100g) for either mercury content or factors around fish farming: toxins in the fish and harm to environment.

Beef liver: 55iu per 100g

Egg yolk: 44iu per egg

Cod liver oil: variable, but also vitamin A (variable, thus inadvised during pregnancy)

UV exposed mushrooms: very little, mostly D2

Fortified foods: (low)

Cereals, Plant milk, Margarine - not in my diet.

In general dietary sources provide quite low amounts of vitamin D compared to supplementing, say, 2000iu daily..

Sun exposure during suitable sunlight wavelength (eg. UK late spring and summer) may provide far higher vitamin D boost, but we CLLers have 8x skin cancer risk.. I avoid much sun.

Another factor are gut absorption issues, which patients are wise to get a vitamin D test.

Michael Mosley (UK TV medical related programmes) usually presents some current research evidences, and often does some variably subjective/objective/fun research for each topic.

(I didn't know his website sell vitamins)

So, for instance, he semi-quantitatively found that eye vitamin products (usually combine lutein, zeaxanthin, meso-zeaxanthin, astaxanthin) may give significant improvement to eyesight within a few months. My experience matches this, and I have astaxanthin in my supplement list.

mrsjsmith profile image
mrsjsmith in reply to cajunjeff

Jeff,

Out of idle curiosity I checked what I had previously read, and promptly forgot. Michael Mosley did a PPE at Oxford, then changed to training to be a doctor and then realised that also wasn’t for him and moved to the BBC as an assistant producer. He is a regular on all forms of media nowadays.

Colette

bennevisplace profile image
bennevisplace in reply to cajunjeff

Ha, Dr Mobley/ Mosley. Sorry, I wasn't playing dumb, it was the real thing. I think I'll have to up my dose of Vit D...

To be serious, you raise a good point. It pays to question the motives of researchers and presenters. Michael Mosley is a familiar face on BBC television, having presented science/ medical programmes for many years. He went through med school and briefly practised psychiatry en.wikipedia.org/wiki/Micha... He's known for promoting intermittent fasting (the 5:2 diet plan) and books he's written on nutrition, and that has certainly generated controversy, but from the broadcasts I've seen he does try to maintain a neutral stance when covering cutting edge science. Such was the case with the vit D radio show, most of which was not about dementia.

Whatever the other benefits of vitamin D (both a nutrient we can ingest and a hormone our bodies can make) might be, it's definitely essential for maintaining bone heath. If for whatever reason one doesn't get enough sunshine, or there are other reasons for D deficiency, D suppplementation is the way to go. In the U.S., about 20% of White adults and 75% of Black adults have blood levels of vitamin D below the recommended 50 nmol/L hsph.harvard.edu/nutritions...

cajunjeff profile image
cajunjeff in reply to bennevisplace

Im totally on board with the use of proven supplements for those who have true vitamin deficiencies and cant get enough vitamins from a good diet and sun. I am not a fan of fad diets, but I am not a nutrition expert for sure and respect people’s rights to choose what they eat.

It does feel a bit ironic to me that people who promote natural remedies are more likely than others, on average, to use supplements. I find it more natural to get our vitamins and minerals from diet. Thats why I don’t understand diets that exclude certain foods like fruits or potatoes or corn and such. Of course people who are gluten or lactose intolerant have to exclude certain foods. I do agree that overly processed foods and sugar added foods should be avoided, if possible.

Mosley (sorry about theMobley error :)) hawks a lot of supplements on his website which raises a natural suspicion for me. I would be similarly suspect if I found out my cll doctor, who prescribes me calquence, sells calquence from a website he owns or has a financial relationship with the manufacturer.

I know where I probably got Mobley from, lol. Mary Anne Mobley was Miss America. I still have a framed picture of me sitting in her lap. :). I was five yrs old at the time, Im not sure how my parents got me the photo-op.

Shedman profile image
Shedman in reply to cajunjeff

.. Mary Mobley .. sigh!Ah, shucks! Some guys get all the breaks!!

Curious coincidence for this vitamin D thread: Mary suffered Crohn's disease - an example of diseases that may limit successful vitamin D absorption.

Vit D production in the skin reduces with age and utilises cholesterol as a precursor - which nicely ties everything together!

In northern hemisphere, and with distance from the equator, wavelength of light becomes insufficient to produce vitamin D in the skin, except for around summer season, still more so with darker skin..

A balanced, varied diet is indeed mostly a very good bet. Some beneficial nutrients are variably or not plentiful in food or difficult to absorb.. else (for me) I deem too important to chance, still more if I lose my appetite for a time..

This sees me variously take: vits B(complex), C, D, K2, ubiquinol, astaxanthin, magnesium, trace elements, omega3 oil, and more recently, glucosamine (appears to have eased my long injured knee).

shmbak profile image
shmbak

I started taking a Vit. D supplement at the start of the pandemic, and was going to cut back now that things are settling down. But I asked for a Vit. D blood test to see where I was, and found out I'm still on the low end of normal, despite taking over 4000 iu per day(in multivit, calcium supplement, and separate Vit. D.) My doctor recommended I go ahead and use a 5000 iu Vit D supplement every day. I have no idea what my Vit. D level might have been before I started supplementing. I am battling cholesterol, so I don't eat eggs or cheese, I don't care for fish, and use sunscreen and a big hat when outside. Plus I'm nearly 65, so maybe making less D than when I was younger. So I guess I will keep supplementing at a high level, given the possibility that I'm also protecting my brain. Thank you for posting the study.

Shedman profile image
Shedman in reply to shmbak

Just an observation about cholesterol.

It is generally agreed that eating high cholesterol foods does not impact your blood cholesterol - that this was an unfortunate misunderstanding and sadly still pushed by various health organisations who have yet to accept the error; for instance, it is possible to eat 6 eggs per day and have very good blood cholesterol scores.

Things more likely associated as cause of adverse cholesterol levels are excess carbohydrates, maybe highly processed vegetable oils too.

bennevisplace profile image
bennevisplace in reply to Shedman

heartuk.org.uk/low-choleste... and nhs.uk/live-well/eat-well/f.... are two organisations that take aim at saturated fats, probably because they are deliberately simplifying the message for mass consumption. As you point out, the reality is different healthline.com/nutrition/fa... but the ifs and buts would confuse people.

shmbak profile image
shmbak in reply to Shedman

I use olive oil and occasionally bottled salad dressing, but limit my fats pretty strictly. I do love rice, though. My issue is that I'm not eating the foods that are considered good sources of Vit. D. I also have a gene mutation that affects how I used Vit. D, so that's probably not helpful.

opal11uk profile image
opal11uk

Thank you for the link, I have joined.

LeoPa profile image
LeoPa

On top of maintaining adequate vitamin d levels it is also very important to make sure that these plaques do not form excessively in the first place. Highly processed food, starch and simple sugar consumption contribute to excess inflammation, free radical creation and amyloid plaque buildup. Amylase is the enzyme that breaks down starch into simple sugars. And Alzheimer's is also called diabetes type 3.

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