No more Calcium supplements : Having done quite a... - PMRGCAuk

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No more Calcium supplements

Kendrew profile image
68 Replies

Having done quite a bit of research on the effectiveness of calcium supplements in improving bone health, I discovered that the thinking around this is changing. The John Hopkins medical Centre and ROS both advise that calcium is always better absorbed from natural food sources rather than supplements and that in actual fact, the effectiveness of supplements in preventing fractures is probably not significant enough to make any useful difference!

I won't bore you with the details, but there are lots of contraindications around the use of calcium supplements and because of my own personal health circumstances, I've decided to stop taking them. I saw my rheumatologist this afternoon and he was in agreement with me!

I will ensure I'm eating a calcium rich diet and continue to take vitamin.d and K2, but I would really appreciate some advice on how much vit.d I should consider taking daily..... Preferably measured in IU's.

I was receiving 1000IU from the Calci-D and taking another 1000IU on top of that. Is 2000IU still adequate ?

Thankyou in advance for any replies.

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Kendrew profile image
Kendrew
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PMRpro profile image
PMRproAmbassador

Have you had your blood vit D level checked? That is where to start with how much vit D to take. I take 4000 IU and that keeps me at a level that is just in the recommended range.

Kendrew profile image
Kendrew in reply to PMRpro

Yes. Result was 58nmol/L. The lower end of normal range.

Should I stay with 2000IU or maybe increase to 4000IU as it's lower end?

PMRpro profile image
PMRproAmbassador in reply to Kendrew

When was that measured? Up to you - but bear in mind that any natural boost is heading for its peak at this time of year. Vit D is at its peak in September and nadir in April/May.

Kendrew profile image
Kendrew in reply to PMRpro

That was back in April...4mths ago. I am about to have full battery of blood tests done again so based on what you've said, probably best I wait for those results before making any dosage decisions.Thanks again.

PMRpro profile image
PMRproAmbassador in reply to Kendrew

Yes - so the lowest it was likely to get.

HeronNS profile image
HeronNS in reply to Kendrew

If you can get another test soon that would be good. Your measurement from the spring is too low. Here I was told 80 nmol was low normal, and encouraged to keep level over 100. This is a rather untidy website but it does have some interesting information:

vitamindsociety.org/

Houseelf profile image
Houseelf in reply to Kendrew

Mine (vit d level) was 42, so lower than yours and I started taking only 800iu on recommendation of my GP which brought it up to 75 (tested 7 months later). Personally I would be careful taking really high doses as it can have an adverse effect.

edit - just to add this was 800iu of D3 specifically

Kendrew profile image
Kendrew in reply to Houseelf

Thankyou. Yes, my levels are monitored regularly but despite a quite high dose, my absorption levels remain lower than expected,

TheMoaningViolet profile image
TheMoaningViolet

As PMRpro says your current levels are your guide, so keep checking them periodically. I was on 4000 IU, but my D3 level is high, so I am now taking 2000 IU instead. I will probably check it in a few months to see how I am doing.

Kendrew profile image
Kendrew in reply to TheMoaningViolet

Thankyou.

HeronNS profile image
HeronNS in reply to TheMoaningViolet

Mine runs high as I have otherwise non-symptomatic sarcoidosis. Even so I take 1000 IU every second day, and get slightly more in a couple of other supplements I take. When my doctor suggested I double my then current dose (1000 daily) when I started pred, that's when my D level got too high. Unfortunately our lab refuses to do a D test more than once a year so it takes literally years for me to be able to check seasonally!

TheMoaningViolet profile image
TheMoaningViolet in reply to HeronNS

We have this private testing option which I occasionally use. They test only for a handful of things, but Vitamin D3 is one of them and it only costs £9 for a test. My GP tends to test for it more readily than my rheumatologist.

HeronNS profile image
HeronNS in reply to TheMoaningViolet

I should investigate, although I did have one done privately several years ago and it was quite expensive. Maybe with covid some of the private options have expanded.

yogabonnie profile image
yogabonnie

Interesting and really good for me since I have neglected to take the bottles and bottles of Calcium I have. I do take the D and SOMETIMES the K2 I have started taking BROMINE because I heard pineapple is good for arthritis. who knows. !!! thanks. for this!

piglette profile image
piglette in reply to yogabonnie

Do you mean bromelain?? Out of interest why don’t you eat pineapple?

yogabonnie profile image
yogabonnie in reply to piglette

Yes that is what it is called!! as for pineapple.... just because I dont just LOVE it. I like it only on PIZZA! ha.

HeronNS profile image
HeronNS in reply to yogabonnie

😂

Viv54 profile image
Viv54

Totally agree , i take my vitamins and make sure i eat a good calcium rich diet. I have my own reasons for not taking it also.

Muffin2019 profile image
Muffin2019

Calcium citrate is more easily absorbed than calcium carbonate according to studies.

Can one ask to have ones vit D levels checked when having bloods done for other things? No idea what mine is and I take 4000IU since start of Covid as my medically trained d-i-l thought we should!

PMRpro profile image
PMRproAmbassador in reply to

You could but whether your GP will do it currently is another matter. It is one of the tests regarded as non-essential in view of the shortage of blood bottles. The private option doesn't need blood bottles - just a pinprick sample.

in reply to PMRpro

Thankyou.

LBM1953 profile image
LBM1953

As a matter of interest. We cannot easily get Vit D tests on the NHS anymore. I have just had mine done privately by a lab as recommended by PMRPRO cost £29. Does anyone know how accurate the at home tests are i.e. the ones that give the results instantly rather than send it away? These are about £12 but obviously of no use if inaccurate.

PMRpro profile image
PMRproAmbassador in reply to LBM1953

Anything that sounds too good to be true probably is ...

I have to say - never heard of those.

LBM1953 profile image
LBM1953 in reply to PMRpro

That's what I thought too, hence I went for the lab based test. As I intend to get tested a couple of times a year the cost is not a factor. I just wondered if anyone had used them and what their opinion was?

PMRpro profile image
PMRproAmbassador in reply to LBM1953

Where did you see them? Have you got a link?

LBM1953 profile image
LBM1953 in reply to PMRpro

On Amazon. amazon.co.uk/Vitamin-Insuff...

PMRpro profile image
PMRproAmbassador in reply to LBM1953

Seems a plausible screening option - i.e. am I severely deficient, deficient or OK?

nature.com/articles/s41598-...

claims that one is 90% reliable which is similar to another I found which is part of a multiple test which costs about 100 euros a time and is only available in German speaking countries. I assume it is something similar.

Mojobumble profile image
Mojobumble in reply to LBM1953

Hi. Can I jump in here and ask which lab you used. Presumably UK based?

PMRpro profile image
PMRproAmbassador in reply to Mojobumble

vitamindtest.org.uk/

probably since that is the one I usually post

LBM1953 profile image
LBM1953 in reply to PMRpro

That's the one....

Mojobumble profile image
Mojobumble in reply to PMRpro

Thank you 😀

Sophiestree profile image
Sophiestree

I have taken 4000Uis for years. My Vit D is mid range now. I have never taken calcium even though I have poor bone health but do take K2. My calcium levels were often high and so I have to up my liquid intake but since the Zalendronic infusion they obviously went down. I do now however increase my dairy intake. Although really not a dairy fan of anything.

HeronNS profile image
HeronNS in reply to Sophiestree

Dairy not necessarily the best source of calcium, although fermented types may be better than plain old milk. Look up other sources on the internet. I hesitate to recommend fish because of the devastation of the oceans, but some plant sources are excellent.

Sophiestree profile image
Sophiestree in reply to HeronNS

Yes. I meant from absolutely no dairy to some cheese and kefir yoghurt... that's hard enough.What plant sources are good for calcium?

HeronNS profile image
HeronNS in reply to Sophiestree

Quite a few, which is why I suggest the internet. Some leafy greens and broccoli for starters. Every website will have a slightly different list so there are lots of options. Here's one: healthline.com/nutrition/ve...

HeronNS profile image
HeronNS in reply to HeronNS

A rule of thumb regarding essential elements, calcium best derived from plant sources, and iron from animals, in terms of how our body metabolises them. Certainly with the calcium better than eating ground-up rocks or seashells!

artisam profile image
artisam

Really interesting , I've been reading about this too in connection with bone health. What does anyone know about collagen, as this seems to be an important contributor? I was looking at supplements and thinking about giving them a try.

PMRpro profile image
PMRproAmbassador in reply to artisam

This

pubmed.ncbi.nlm.nih.gov/330...

suggests they MAY be helpful in certain conditions - but the conclusion says very longwindedly that a lot more good research is required before the large scientific authorities can support their use.

I suppose it comes down to suck it and see! However, personally, I suspect a good diet is as good as the supplements since it is the amino acids that matter and they will be derived as food is broken down and absorbed in the stomach.

artisam profile image
artisam in reply to PMRpro

I think a good diet is always going to be best, which I do have and good supplements are sooo expensive! I'll read the link with an open mind. Thank you as always.

SpydaV profile image
SpydaV in reply to artisam

How about making bone broth for collagen? It's great for bones and soothing for the gut.

tangocharlie profile image
tangocharlie

That's interesting as the Adcal tablets really affect my guts so I hate taking them. I bought some Gummies that have calcium and Vit D in them but the amounts in each seem so low it's probably a waste of money (it says 5ug of D3 and 125mg of calcium per chewy but I can't work out how that compares to the Adcal). I have leafy greens like Cavolo Nero and broccoli with every meal and eat a Baby Bel cheese every day and hope for the best. I last had a Dexa scan about 3 years ago and everything was fine then. I would ask for another one but am worried that if it is bad my rheumie would make me take Alendronic Acid which I don't trust at all. But I guess I ought to know anyway. I also take Vit D3, 1000-2000 per day in summer and 4000 in winter.

PMRpro profile image
PMRproAmbassador in reply to tangocharlie

Is that 125mg elemental calcium? The 5mcg is 200 IU. Two AdCal tablets is 800 IU. If the 125mg is elemental calcium then 4 chewies equals 2 AdCal

tangocharlie profile image
tangocharlie in reply to PMRpro

Thank you, that's what I don't know, there is no other info on the cannister. I bought them on impulse a few days ago and should have asked the pharmacist what they were equivalent to. That amount of Vit D is negligible too isn't it if you're supposed to have between 1000 and 4000 iU per day and each one-a-day gummy only gives you 200? What a con and waste of a fiver esp as I'm not sure they agree with me either, but it could well be the fillers and coatings or the calcium itself that's the problem.

HeronNS profile image
HeronNS in reply to tangocharlie

No one can make you take anything. And as you appear to have been aware of eating useful foods then you are liely to be fine. Do you do weightbearing exercise as well (even a daily walk)?

tangocharlie profile image
tangocharlie

Interesting that Prof Tim Spector who used to be a big advocate for vit D now says he isn't so sure .... so if even people like him don't know, how they heck are we supposed to know what to do for the best?

theconversation.com/the-sun...

PMRpro profile image
PMRproAmbassador in reply to tangocharlie

Possibly - but there is evidence that being replete with vit D reduces the risk of falls and there are definitely other muscle symptoms that can be combatted by improving vit D levels. It also reduces asthma attacks. Its the only vitamin I take - and that only because it isn't available through dietary measures in Europe. I'd be interested to see all the figures - and where they came from.

tangocharlie profile image
tangocharlie in reply to PMRpro

I have a freind who is a physiotherapist who says a lot of her patients' problems that they come to her with clear up when they start taking Vit D and I do believe in it, but maybe I've swallowed all the hype. Anecdotally, another friend had really achey stiff legs which are OK now her GP told her to start taking it

Ana-16 profile image
Ana-16 in reply to PMRpro

I also take vitamin D supplement following the advice of BC research professor 20 odd years ago and same advice from oncologist and endocrinologist 6 years ago after BC again. My levels are checked whenever I have blood tests. I have had no adverse effects

HeronNS profile image
HeronNS in reply to tangocharlie

Vitamin D doesn't do everything - that's why people like me go on about the importance of Vitamin K2 and a few other nutrients which, however, are generally easier to get from one's diet than K2 or D.

bright-horizon profile image
bright-horizon in reply to HeronNS

I think it was your post that inspired me to take K2. What dose would you recommend? The one I take recommends 75mcg per day.

HeronNS profile image
HeronNS in reply to bright-horizon

Australia is the only country I've heard with a rda, they suggest 180 mcg per day. I have 100 mcg capsules, and take two a day for total of 200 mcg Vitamin K2 -mk7.

bright-horizon profile image
bright-horizon in reply to HeronNS

Thanks! Sounds about right.

Croft9232 profile image
Croft9232

I recently had a Vit D blood test at GP surgery with the nurse. I asked for it as I had symptoms of deficiency. I was right! result was 16 so GP phoned and now taking 50000 IU once a week for 6 weeks then repeat blood test. I stopped taking calcium VitD very early on after diagnosis May 19 as they didn’t suit me and then shortly after that Dexa scan showed very good results much better than my age apparently according to Rheumie. I also have taken for past 12 years 1 mg Oestrogen.

Let’s see what happens after 6 weeks I am hoping a maintenance dose will be suggested. When tested 18 months ago it was 46 and my then GP thought that was adequate and nothing was needed! On reflection maybe I should have taken a maintenance dose myself.

bright-horizon profile image
bright-horizon in reply to Croft9232

If you don’t mind saying, what are the symptoms of Vit D deficiency?

PMRpro profile image
PMRproAmbassador in reply to bright-horizon

Sometimes very similar to PMR so it should be part of the work-up when PMR is suspected.

my.clevelandclinic.org/heal...

is a fairish outline - but don't take too much notice of the dietary section - vit D is NOT added to foods in Europe and the UK and very few foods have natural vit D.

nuigini profile image
nuigini

I've been taking between 2000 IU and 5000 IU for many years, long before being diagnosed with PMR. My main reason for doing so was living in the Northwest Territories of Canada where sunlight was limited for most of the year. When PMR came along in 2014 I began taking 4000 IU on a daily basis.

A Vitamin D test taken in 2014 showed 113 nmol/L and a recent test in June of this year showed 125 nmol/L. The lab specified the following: >25 severe deficiency, 25-80 Mild to moderate deficiency, 80-200 optimum levels, > 200 toxicity possible.

For the last 7 years I have lived in Panama with plenty of sunshine for at least 6 months of the year. Actually, thanks to covid I spent a solid 18 months there recently. I will continue on with 2000 IU in the am and 2000 IU in the evening for now. My doctor's recommendation is 2000IU daily.

HeronNS profile image
HeronNS

Just a bit of possibly important trivia - the measurement used in the US is generally not the same as in the UK and Canada, so if a reader is in the US and sees us talking about levels of around 100 nmol/L, I suspect the optimum number for ng/ml is much lower, I think 40-60.

PMRpro profile image
PMRproAmbassador

Do you also get your blood levels checked regularly? Such a high dose is safe for a short period up to 3 months or so, however longer term it may lead to very high levels which may not be advisable.

Bcol profile image
Bcol

Having read up about Eric Berg on line, I personally, would not be taking very much notice of anything he says.

Kendrew profile image
Kendrew

I'm afraid I have to agree with Bcol. Eric Berg is a chiropractor but most definitely not a medically/clinically trained doctor so please be extremely wary of his advice, particularly as much of it is not based on current or up to date medical knowledge. We can all research and gather information about various health topics but it doesn't give us the credentials, experience or expertise to make useful, reliable or most importantly, safe diagnostic or prescriptive decisions.

bright-horizon profile image
bright-horizon

I live in New Zealand where the health authorities recommend getting calcium only from food sources. The research done here found that calcium supplements are linked to strokes and heart disease. My GP and rheumatologist recommended fortnightly D3 50,000iu which I’ve been on for a few years now. I’ve also been taking daily Vit K2 for the past 18 months since learning about it on this forum. I consume cheese, yoghurt and milk and lots of green leafy veg. Next week I’m having a bone density scan which hopefully

will show my mild osteopenia has not worsened as a result of 2 ¾ years on prednisone.

Nextoneplease profile image
Nextoneplease in reply to bright-horizon

Interesting perspective 😊

I was diagnosed with osteomalacia, and then osteoporosis, more than seven years ago. I was prescribed AdCal (calcium with some Vit D) as well as vitamin D separately, but could really only tolerate taking the Vitamin D on a regular basis.

Every blood test I had, the calcium levels were fine, but the doctors refused until a couple of years ago to take the AdCal off my prescription, even though I told them I wasn’t taking it - quite the opposite to the view apparently taken in NZ !

Anyway, they’ve finally given in and taken me off calcium as I get enough from diet. But now I take prednisolone, it’s me that’s concerned maybe I don’t get enough calcium 🤦‍♀️

I’ve requested a blood test and a DEXA scan today to hopefully knock this on the head…..

Kendrew profile image
Kendrew in reply to bright-horizon

Did you mean 5,000ių of D3?....50,000ių would be an excessively high dose!

bright-horizon profile image
bright-horizon in reply to Kendrew

Yes that’s right, 50,000iu per fortnight or 1.25mg. Equates to 3,000iu per day.

Kendrew profile image
Kendrew in reply to bright-horizon

Ah right. Got it. Sorry....misunderstood.

PMRpro profile image
PMRproAmbassador in reply to Kendrew

It's the usual approach to rectifying low vit D. Though 50,000 IU per week in split doses for 8-10 weeks is preferable as it is better absorbed like that and less likely to cause GI upsets.

PMRpro profile image
PMRproAmbassador in reply to bright-horizon

The links to stroke etc are in young healthy women who think more of a supplement is better than less - often far from true. The use of supplements should be restricted to older patients with risk factors - and also not be too great. A dietary assessment is required - and often older patients are avoiding dairy because a dietician has told them it is bad for them! I was to cut dairy to try to get my cholesterol level down - so I was getting only a very low level of dietary calcium. Then she panicked. I now ignore my cholesterol level - can't take statins.

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