At MrsK's request - ask about your vit D level and why!

Bones, joints and muscles
1

Hi all!

In the \"Pain on reduction\" thread MrsK has posted a comment about how she has it on good authority that everyone over 60 should get the vit D level in their blood tested and then said I'd tell you why!! :oops: :lol: I'll do my best and I hope you won't find it too long-winded!

I'm sure many of you have heard at some point that you get all the vitamin D you need from your diet and from sun exposure - I've been told that by my doctor. This is one of the myths I will try to explain here together with why it is important to this group in particular.

It is well known in the scientific and medical communities that low levels of vitamin D are found in patients with auto-immune disease, especially multiple sclerosis and arthritises but it isn't known whether this is cause or effect - i.e. is the disease caused by the deficiency of the vitamin or is the lack due to the autoimmune disease or even has it nothing to do with it at all. Whichever it is, this must have had an effect on the assessment of what is called the \"normal range\" acceptable for the amount of vit D in our blood. To get a figure for this normal range, blood samples are taken from many people, the level is measured in all of them and then they look at the range of measurements made and take a set of figures which excludes the very high and very low levels and call this the \"normal range\". Common sense would suggest that if there are a lot of people who have low levels then whilst the range you get after doing this is representative of what is found in the general population, it does not mean that this is the best level for the body to function. The opposite is also true of course - if everybody is very unhealthy and has a high cholesterol level then the \"normal range\" might be on the high side of what is good for you.

In Victorian times it was realised that the poor living conditions and diets led to the development of rickets - children did not get enough calcium in their diet nor did they get enough exposure to the sun. This combination led to poor bone structure and rickets. Diets were improved, including supplements, and children were encouraged to go out in the sun. Remember the cod liver oil? Before the 1950s, especially during the war, food had added calcium and vit D (in milk, flour and margarine) to make sure there was enough even in restricted diets. At some point there was a scandal when a baby milk company made a mistake and added too much and babies were made ill so the practice was stopped in Europe although it still continues in the USA.

Vitamin D can also be made in our skin by the action of sunlight on cholesterol. You will all remember that we spent a lot of time outside when we were younger and no-one ever told us to put sun-screen on, whatever time of day it was. We ate eggs for breakfast and tea, ate cakes made with flour, margarine, eggs and milk. We had plenty of calcium, cholesterol and sunlight.

In recent years we have been told we shouldn't eat cholesterol-containing foods, we shouldn't go out in the sun in the middle of the day and if we do go out we should use high-factor sun-screens or cover up. The effect of this has been that we no longer make much vitamin D in our skin - using a factor 8 sunscreen reduces the amount of vit D made by about 95%! In addition, the sun has to strike the skin at an angle closer to vertical than it ever really manages in the UK - if you live north of Turin in Italy the amount is less than optimum! Between April and September you get some if you go out with bare arms and face at midday - there is no chance from November to February.

And getting vit D from your diet? You must eat more than 8oz of oily fish at least 3 times a week to get anything like what you need. Other than that there is almost none in our diet in the UK as nothing is fortified - even then you would need 40 tablespoons of margarine or 40 eggs a day to get enough! Oily fish is realistically the only source - salmon, and preferably wild salmon, sardines or mackerel. Fresh tuna has some but much less and tinned has almost none.

And now I'm going to introduce a touchy subject - age! If you are 20 you will make a reasonable amount of vit D - providing you are out in the sun and your cholesterol is OK. But studies on young healthy residents in Boston USA showed that even they had quite low levels of vit D in their blood - low even by the old accepted levels for the normal range. As you get older, your manufacturing company in the skin gets tired and less efficient and by the time you are 70 your body is making a quarter of what it did at 20. Add to that the fact that most older people just don't go out and sunbathe in skimpy summer clothes and you can see that at our ages (PMR is usually found in the over 50s) we're just not producing sackloads of vit D.

You will still get the story from pharmacists and doctors that it is dangerous to take too much vit D as it is a fat soluble vitamin - I suspect they think that that means it is present in all fat, which I've just shown isn't true - and is stored in the fat in our bodies and isn't released if you have too much (on the other hand, if you take too much vitamin C you just pee it out!). Nevertheless, there have been many studies in recent years which suggest that the currently accepted normal levels are far too low and that it is not dangerous to ingest much larger amounts of vit D than we are doing at present. It has been shown that if you boost the vit D levels of the elderly in care homes you can improve their balance and reduce the number of falls they have - and also the number of fractures as a result. A whole range of studies have led to the conclusion that the current normal range of 20 to 45 (I won't bother you with the units) is too low and that at least 50 to 75 would be much better for us.

However - this normal range was established years ago and, as I have shown, there have been massive changes in llifestyle since then which must have had a massive impact on the amount of vit D we have in our bodies. The truth is that for a large part of the population, their vit D level is below even the bottom end of this scale which is accepted by many authorities to be far too low. It is accepted even in the UK that 20 is low and 10 is far too low.

Anyone who is put onto calcium supplements and alendronic acid should always have their blood calcium checked beforehand and this is usually done. This is because if you have a too high or a too low calcium it can make you very ill. If it is high you don't need supplemets - if it is low and you are to take alendronic acid that takes more calcium out of your blood and it might get too low. That must be sorted out first. Nowadays your doctor will usually check your vit D level too - but not always. Some people - like MrsK - have never been given calcium/vit D supplements (AdCal or Calcichew) others find they disagree with them and stop taking them. Or they are taking so many tablets they miss some out. If they have a good diet with dairy products it probably doesn't matter for the calcium - but what about the vit D?

The current recommendations for the over 50s are for a supplement of 400 IU in the UK but some experts believe that we really need to take in about 2500 to 3000 IU of vit D a day. The 2 AdCal tablets you take have a total of 800IU, plus there will be a bit from your diet (depending on how much salmon you can afford!) and in the summer a bit from the sun - difficult to see how you are getting enough, isn't it? Even after months of taking the supplements and living in northern Italy - not far north of Turin and I use almost no sunscreen and go out in the full sun every day in the summer - my blood level just scraped in at 20.

There is a problem in the UK in that high dose supplements are not approved for GP use - although your consultant can approve them. The problem is getting them to agree you need them. Another problem is that the NICE guidelines state that \"it is assumed that post-menopausal women have an adequate calcium intake AND THAT THEY ARE VIT D REPLETE\". i.e. there is no need to measure their blood levels. I was nowhere near vitamin D replete at diagnosis and MrSK has also just had her vit D measured after demanding it because of muscle pain that she was sure was not PMR - and it was very low. OK - we are just two but how many more of us are in the same situation?

Although we can't get high dose vit D from our doctors - we can get it from Boots. We don't need more calcium but there is a good chance we need more vit D - given the figures I quoted earlier. There are reputable studies to show that lack of vit D is also associated with at least 12 cancers besides the autoimmune spectrum of diseases and there are a lot of mainstream doctors who are coming round to the idea that we need more vit D to live healthily - if I hadn't found evidence of that I wouldn't be writing this. I don't jump on every bandwagon claiming this or that is the cure-all - but in this case both the Mayo Clinic and the Cleveland Clinic have published work in the field besides a lot of others.

I leave it to you to consider and if anyone has any questions about anything I've missed out or that isn't clear - ask me please. It was a lot but I think it is an important aspect of our PMR journey.

cheers all,

EileenH

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Thank you Eileen, I could never have written it as clearly and concisely as you have done.

I really wanted the PMR people to know all about it and to make their own choices and without a starter for ten, you can wander around and get lost.

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Thank you Mrsk for instigating this and Eileen for an epic bit of research - wow! Got those little grey cells working!

The good thing is that there appear to be very little, if any, side effects of taking Vit D supplements although I guess we should all have our levels tested before just taking it.......but that's an ideal world! However, I've read that any side effects are apparently offset by taking Magnesium with the Vit D as in order to make Vit D the body has to use up magnesium and apparently many people are deficient in this too! Got a feeling I could suffer from the latter as I do go through periods of cramp in my legs when turning over, getting out of or stretching in bed.......I eat extra Brazil nuts and amazingly it seems to work.

Thanks again to both.

MrsO

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Thanks Eileen - great research and really informative.

In support of what you have told us - Dr George Jelinek, in his book 'Overcoming MS' recommends regular supplements of 5,000 IU of Vit D3 per day (in winter) for MS (also an autoimmune condition) sufferers - aiming for a blood level of 150 nmol/litre (He also says there is plenty of evidence that doses of 10,000 IU per day are perfectly safe - in case we should worry about overdosing). He too stresses the importance of getting blood levels checked reasonably regularly.

Since most of us don't live in sunny Australia - I guess we might need these doses in summer too!

Thanks again -

Purple cat.

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Certainly the rest of Europe is very keen on magnesium supplements and if you complain of leg cramps the first thing any GP or pharmacist will ask is whether you have tried magnesium - it's available in every supermarket and drugstore. The response you will get to that in the UK is generally that it doesn't make any difference - quoting a study done somewhere in the Midlands I think that they say established that. It was quoted at me by my husband who frequently wakes me at night gettingup to stretch the cramp. Strangely :roll: when he gives in to my nagging and takes the magnesium he goes for months with no problem only for it to return about 6 weeks after he stops taking it :lol: . I'd just like to point out that the study was done on DIALYSIS patients who are chronically magnesium depleted. Not really what I would describe as representative of the general population!

The main reason for getting it tested is that if it is very low (well under 20) you would need more time at a dose of about 4000 to 5000 IU to get it up to a decent level than you would need if it is in the low 20s - you would do this over a period of maybe 8 weeks. This should achieve a level of between 70 and 100 which is the level most of the pro-vit D lobby recommend.

After that, you are looking at a maintenance dose of about 1500 to 2000 IU (your AdCal tabs plus pure vit D tabs) to keep at a decent sort of level, especially in the winter. Sun exposure has the potential to produce lots of vit D, just that potential is rather limited for the reasons I described. What is important is that you need to be good about taking it regularly or you are just running to keep in the same place, so to speak. Some authorities say you should take even higher doses - you'll find articles by quite reputable researchers in the US and elsewhere with details all over the internet - but all I wanted to do here was flag it up as something to be considered that is quite easy to deal with in the UK without taking mega-high doses. Here in Italy it is impossible to buy pure vit D (to stop us overdosing) although the AdCal type supplements are available - which I think is worse as that might lead to too much calcium being taken and then it can be deposited into the walls of blood vessels which is what causes \"hardening\" of the arteries.

By the way - anyone on alendronic acid who hasn't had their vit D and calcium checked before starting to take it should be asking their doctor why it hasn't been done. If your calcium and vit D levels are low that must be dealt with before taking the alendronic acid as that \"redirects\" calcium into bone and might leave you with a very low calcium which can make you very ill.

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EileenH -

I'm interested to hear about the cramp - I suffered from cramp in hands and feet - especially when swimming - when I was taking higher doses of prednisolone (between 9 and 15 mg), however - once I got down to 8 mg and now 7 mg - I don't ever get cramp at all. I do not take magnesium supplements - so, for me, it would seem that cramp maybe a side effect of the steroid. However if it comes back I shall certainly try the magnesium.

Purple cat.

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Purple cat - I don't know if this is true but I was told that there is evidence that a lot of dermatologists in sunny Australia are osteoporitic as a result of their avoidance of the sun and use of sun-screen. This may be apocryphal but it makes sense! All the info I find does recommend remaining in the midday sun only as long as there is no evidence of burning. I remain convinced of the concept that it is the holidaying in countries much closer to the equator (nearly said further south!) than your native land and allowing yourslef (or the kids) to burn that causes the damage.

As for your D3 comments - the 10000 IU bit seems fair enough though I suspect that taking that amount on a regular basis close together might pose the odd problem. I don't think 150 is too high but equally slightly less also seems enough - after all you have to get a doc to be prepared to spend some of their budget on doing the test! A lot of the pro-D3 work has been with respect to MS as there is plenty of documentation that low vit D is very common in MS.

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Thanks Eileen for all the information I shall ask my Dr next time I see her if I have had a test for Vit D I dont know all I know is my ESR CRP and cholestral and also there was a problem with low sodium levels but they have evened out now

Best wishes Mrs G

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At the request of Mrs K, I've duplicated my post from another thread concerning Vitamin D.

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My rheumy called this afternoon [Oct 18] and told me my vitamin D level was a bit low at 27. He said normal (actually target level or beneficial level) is 30 to 100. I told him that I had been taking 4000 iu daily (2000 after breakfast; 2000 after dinner) for the past 6 mos and was surprised it was low. I only stopped taking the Vit D about 10 days ago after seeing the GI doctor... where he explained that 'over the counter' vitamins have a lot of filler in them and can cause stomach upset and gas. My rheumy called in a prescription for Vitamin D for me. I picked up the script today. Now get this, it's for 50,000 iu of Vitamin D — but it's only to be taken once per week. Evidently in prescription form it's different and doesn't cause stomach distress. We'll see. There are only 8 tablets in this script (2 months worth) and he plans to retest my Vit D level at next visit. Cost me only $1.79 with insurance ($15 without insurance – so not that expensive).

I found an interesting link where this high level of Vitamin D is discussed. Looks like everyone that posted there had no trouble taking that dosage AND felt better afterward.

I know this post will not show up right away because of adding this link, but I think it's pretty informative and worth the wait for the moderator to approve.

Is 50,000 iu of Vitamin D once a week harmful to you?

http://www.healthcentral.com/diet-exercise/c/question/43035/44608

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I found an interesting post on another forum regarding Vit-D and thought it worthwhile sharing. I copied it below rather than posting a link because of the delay in getting posted.

Quote:

Question posted by 'Ssusan'...

I finally went to an MS Center, the one in Worcester. Apart from extensive lesion on spine, it was found my vitamin D level is negligible. I was prescribed 50,000 IU once a week for 2 months. Has anyone had such a huge dose? Does that seem like a dangerous dose?

Reply posted by Ted Hutchinson (Lincolnshire, UK - vitamin expert) [Google 'Ted Hutchinson' for more info]

Certainly not, If anything it is a conservative amount compared to Dr Joe's regime (link removed).

To dispel any illusions that this could be in any way dangerous, read the Risk Assessment for Vitamin D. We present a risk assessment based on relevant, well-designed human clinical trials of vitamin D. Collectively, the absence of toxicity in trials conducted in healthy adults that used vitamin D dose 250 µg/d (10 000 IU vitamin D3) supports the confident selection of this value as the UL.

Your 50,000iu weekly dose represents around 7000iu daily – so is WELL UNDER the amount that if you took it daily for months on end, and well over a year, could conceivably cause any noticeable side effects.

One of the World's leading vitamin D scientists, Bruce Hollis, says he tries to keep his own level at 125 nmol minimum and consume between 2,000-8,000 IU/day depending on the season.

He works at Medical University of South Carolina Charleston, SC, USA. That is hardly North as far as I am concerned. I live at 52 N. Yet he needs—and as someone with access to Vit D tests and so should know for certain—8000iu daily in the Winter to keep his levels at a safe level.

Consider also the fact your body uses between 3000 and 5000iu daily so your daily 7000iu is only replenishing your body store by around 3000iu daily. To get you safely through the winter, bodies have to store roughly 150 days worth at 4000iu=600000iu so logically it will take at least 200 days to rebuild a reasonable level at your current dose rate. So two months will not be long enough.

You need to be getting out into the sunshine regularly as well. Limited, regular sunbathing preferably nude (those areas least exposed least tanned are the most effective at generating vit D), preferably midday (when the UVA/UVB ratio is best for vit D synthesis) preferably laying down. Never allow your skin to burn or even go red. Several short sessions (10 -20mins) are far more effective than long sessions. Don't shower, swim or hot tub immediately after sunning or you may wash the vit D off it as it will be in your perspiration.

Have just realised that Worcester could be at latitude 42 or 52 depending on if you live USA or UK if your the UK Worcester lat 52 then double the times for sunbathing sessions as most of the time it's too chilly for the skin to reach the temperature to generate Vit D and also see what happens to the vitamin D that is on your skin if you stay out in the sun too long and how it turns into stuff your body cannot use.