Vitamin D: I’m continuing to gather... - Bone Health and O...

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Vitamin D

peaklander profile image
29 Replies

I’m continuing to gather information in order to make a well informed decision about osteoporosis treatment.

I requested a blood test to check calcium and vitamin d levels. Calcium is normal , vitamin d insufficient (38.3 nmol/L)

This is surprising as I regularly eat oily fish and eggs and spend at least two hours a day outside walking with my dog. I also spent a month in Australia earlier in the year so surely my vitamin d should be well topped up. I know that my age (73) means that absorption is compromised but I do wonder if there is some underlying condition in need of investigation ( hyperparathyroidism?)

My GP is totally uninterested saying that everyone in the uk has low levels. He refused to prescribe supplements despite NHS guidelines of 2018 showing clearly that I am eligible.

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peaklander
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Met00 profile image
Met00

Sadly many GPs don't understand the importance of good levels of Vitamin D for bone health. Vitamin D helps absorb calcium, which is one of the minerals needed by our bones. Your blood calcium level won't give any indication of calcium in your bones, as, unless you have an underlying health problem that affects it, our bodies keep our blood calcium levels tightly regulated, meaning that if our intake and absorption of calcium isn't sufficient, it will be leached from our bones to maintain blood levels. It's very difficult to get sufficient Vit D from diet, and in the UK we can only make it from the sun for half the year at the most (where I live in the Midlands, that's only from about mid-April to mid-August), and then only when the sun is high enough in the sky (around the middle of the day) - a useful guide is that our shadow should be shorter than our body. As you say, unfortunately we also become less efficient at making our own Vit D as we age. I take a supplement, but had been reducing this during the summer months, only to discover last summer that my blood D level dropped by 19 points in 4 months! I was advised by an orthopedic consultant that my blood D level should be at least 75nmol/litre, preferably 100 (and many experts actually advise at least 125). The only way to find out how much you need to supplement is to have regular blood tests to keep track of your level.

in reply toMet00

Met00, also, as you say, blood calcium levels are tightly regulated, and an oversupply can be offloaded into soft tissue and arteries. Vitamin K is needed to send calcium where we need it, into bones, and very many people are deficient in vitamin K as well.

Siamang profile image
Siamang in reply toMet00

Does that mean there is no point having calcium levels checked? My GP gave me a food list to tick what I was consuming but have no idea what the body is absorbing! Also how often should vit D get checked and if ok should you still take vit D. I’m actually worried I’m overdosing on the calcium vit D and K 2 supplements.

Met00 profile image
Met00 in reply toSiamang

Hello Siamang. I'm not an expert, so please do your own research too, but this is what I understand from all I've read in recent years. Yes, it's worth getting your calcium checked at the same time as Vit D (they usually get done together anyway, together with protein, with which they then provide an adjusted calcium figure, which I understand is the relevant one). Although calcium is usually tightly regulated in the bloodstream, it is possible for levels to rise too high, particularly when supplementing with calcium and Vit D if not taking co-factors, although this would be extremely rare on the standard prescription dose. It's recommended to take Vit K2 and magnesium to direct calcium to the bones, particularly when taking high doses of Vit D, and ideally calcium should be from diet, only topped up with a supplement to make up any shortfall. I get my Vit D and calcium checked 3 times a year, but will reduce this to twice a year when I eventually reach and maintain a good level - I got there once, but then it plummeted again!

Sunseaandsand profile image
Sunseaandsand

Hi peaklander,

The Gps do not give out vitamins on prescription anymore.Supplements can be bought at Pharmacists,

Who diagnosed your Osteoporosis? If it was the bone clinic then the best thing would be to give them a call, ask to speak with one of the nurse and they will advise you how much to take.

One thing they are good at is giving advise out about calcium and vitamin D supplements.

Alternatively give the nurses a call on NOS they are fantastic. I do know that sun is the best source but it does have to be consistent, by that I mean the winter sun is of a huge benefit too. Also to expose as much of the body to it as possible.

My Calcium levels are and always have been good, also likewise for vitamin D but unfortunately I have still had 4 spinal fractures.

It is a very difficult road to travel.

in reply toSunseaandsand

Sunseaandsand, is it your blood calcium levels that are good? Do you take Vitamin K?

Jennymary profile image
Jennymary

I'm a beginner on this journey but I find it strange that you were told that a level of 38.3 is low, my vitamin D was tested earlier this year, it was 23 and GP said they were looking for a figure of 30, she put me on supplements and had a repeat test this week, it's gone up to 77 which GP says is lovely

peaklander profile image
peaklander in reply toJennymary

I’m no expert but maybe you need to check the units - measurements are expressed in either nmol/l or ng/ml. If measured on the latter scale my level is 15.32. Hope this helps.

DarcyMcginty profile image
DarcyMcginty

My GP put me on Calcium and Vit D as soon as I was diagnosed with Osteoporosis 6 years ago. Although I had a brief break from Aledronic Acid last year I have been kept on the Calcium and Vit D

My experience has been that intraoral BetterHealth vit D spray 3000 isn't expensive, is absorbed directly into bloodstream, and suits me far better than the pills I could get stomach cramps from if I waste energy getting from the gp. I take otc (over the counter) Vitamin K2. I had similar low Vit D to you, and it raised quickly.

MollyStark profile image
MollyStark in reply to

Just wanted to say that I took the BetterYou vit d3 oral spray for several months and when my vit D level was tested it was only 21. I took the Better you B12 spray at same time and my B12 level did go up significantly. I was prescribed vit D3 10,000iu a day for a month by the GP but then told that was it, soI have been buying the same supplement direct from the makers, SunVit, and have continued with 2,000iu per day. Unfortunately, the GP said they don't retest the vit D to see if the levels have gone up after the initial higher dose, which makes no sense to me. I shall get a private test in a couple of months.

in reply toMollyStark

MollyStark, thank you for reminding me, it was BetterYou, as you say, also, I took 3 sprays on medical advice, not one as it says on the bottle. I don't advise anyone to do anything, but maybe you could get advice for yourself on that? It is hard to understand the thinking behind your gp's treatment of low Vit D. Surely the tests are only useful if repeated to measure change over time? I recommend M Hollick's The Vitamin D Solution to find out more about how to get enough and how to test it. He is promoting brand names too, and that can make a message seem less credible, but it doesn't alter the facts and it is useful to know these before getting a private test.

MollyStark profile image
MollyStark in reply to

Thank you, I will look into the book. I took 3 sprays a day and was so surprised it had no effect. I would have suspected it was of poor quality if it wasn't for the B12 working and I also use the Better you magnesium oil. A few years ago my vit D was tested at the hospital after having a dexa scan and it was a similar low number. I was put on 10,000iu a day for one month then 5,000iu a day for 2 months. My level was retested after that and it was 102. I suspect the latest regime of one month only and no retest is down to reducing costs. But if it isn't effective or they don't know if it's worked then it seems illogical to me. I shall take it up with my GP at the next appointment. He is very amenable but i suppose he is bound by the rules at the end of the day.

in reply toMollyStark

IMollyStark -it's good to know the B12 spray works for you. I have intramuscular shots every 5 weeks. May I ask 2 questions, are you vegan, and do you drink coffee?

MollyStark profile image
MollyStark in reply to

Sorry for the late reply. I am vegetarian but not vegan, so i do eat some dairy produce, mainly cheese. I have the occasional cup of (naturally) decaffeinated coffee. I usually drink naturally decaffeinated teas like roobois and camomile. I eat a varied and healthy diet with plenty of green leafy veg and good fats like avocado and nuts. I also avoid gluten most of the time.

in reply toMollyStark

thank you for reply - I really need my coffee. I have looked for scientifically obtained evidence that it takes calcium from the bones, but I haven't found anything unequivocal. I have an autoimmune condition which affects my liver - coffee is said to be good for the liver...

MollyStark profile image
MollyStark in reply to

It seems that just about everything is good for some things and bad for others, you really can't win . I'm sure one or two small cups a day probably wouldn't be a problem. Does it make a difference if it's decaffeinated? I wasn't sure if it was the caffeine which is the issue. If it is, I can recommend a very good decaf by Clipper, it's an organic Latin American instant coffee but tastes like a proper coffee.

The advice we're given regarding the sun is a good example of conflicting advice. I understand we need to be exposed to the sun during the middle of the day for the benefit of our bones. But we're also told to avoid the sun between 11 and 3, to wear sunscreen and cover up to prevent skin cancer.

in reply toMollyStark

MollySarrk - I enjoy filtered coffee. I love the taste, the smell, and the release of energy it seems to create in me. I make it every morning and mid-morning. I gave it up for several years when told it was bad for me. I started to enjoy it again when the same specialist told me it was good for me. My understanding is that the processing of some de-caff products may contain more harmful substances than caffeine. You are right to say we can't win, if winning means getting it right, when what is 'right' changes all the time with new discoveries. We just do the best we can for ourselves and others and hope to cause no harm. I think it'll be good enough :-)

MollyStark profile image
MollyStark in reply to

You are absolutely right 220681ok, we can only do the best we can for ourselves and others. The old adage 'everything in moderation' is probably true when it comes to food and drink, unless one has a particular intolerance etc.

We try to be as careful as possible when it comes to chemicals in our foods (apparently most decaf teas and coffees are processed using the same chemical you find in a can of wasp killer!) and the Clipper Latin American coffees, both decaf and regular, are processed using spring water. I can't handle caffeine really, just one cup of regualr coffee will make me feel jittery, so I was really pleased to find the Clipper variety. If you like the buzz that caffeine gives then it probably won't hit the mark, but it's a good alternative.

in reply toMollyStark

Thank you for the hedz up on Clipper.. It will be good to have some alternative drinks. I don't like the buzz per se, but a symptom of PBC (Primary Biliary Cirrhosis) is for me massive fatigue It's not like regular tiredness. It is mind and body numbing inertia. I could spend all day at home or several days waiting for it to lift, but coffee lifts it in 20 mins or so, and then I can get moving which helps everything to be better. I know it is addictive and I manage as far as possible only to have it before 1200. I'm about to start making kefir, kombucha and ginger beer instead of buying them ready-made. Any tips welcome :- )

MollyStark profile image
MollyStark in reply to

Sainsbury's stock the coffee and I think Waitrose too.

I'm sorry to hear about your liver problem. I can relate to the fatigue which I suffer from. It's so hard to explain to people that it's nothing like being tired after a busy day or hard work, isn't it? I can certainly understand why you are reluctant to give up coffee!

I'm not great at home-made recipes, although I'm sure there are some members on the forum who are. I have just discovered that Yeo make a kefir yoghurt so I am going to try that tomorrow.

Let me know how you get on with the home-made recipes, if it's fairly straightforward I could give it a go!

in reply toMollyStark

MollyStark- it's due to HeronNS that I have a new interest in fermented foods. Also, I got the Vitamin K and the Calcium Paradox book by Kate Rheaume-Bleue that she rated highly. It's good in itself, also I like to have a focus on healthy eating and there's always ways that I can improve!! May I ask, is there something else, besides bone issues, that causes your fatigue? I apologise in advance if I could know this from an earlier reply or post of yours.

MollyStark profile image
MollyStark in reply to

Thank you for the details of the book, I think I have some reading to do!

I was diagnosed with fibromyalgia last year and fatigue is one of the symptoms. I don't have joint pain, which is a main symptom so I have always been doubtful about the diagnosis, but I do have the painful pressure points associated with fibromyalgia.

The fatigue is terrible at times. I get very frustrated because it means I am less active than I need to be, that in turns makes me worry, so I'm sure that's adding to the fatigue!

My diet is healthy, I don't smoke and rarely drink. I enjoy healthy food and make sure I get a good variety of nutrients every day, as well as the vit D and K2.

in reply toMollyStark

These are my problems too. It's good we have this site where there's always ideas, understandings, kindnesses. It helps a lot.

MollyStark profile image
MollyStark in reply to

Absolutely, the members here all seem to be intelligent and informed people.

Valerie0106 profile image
Valerie0106 in reply toMollyStark

Important to note that these teas (herbal, redbush) are naturally caffeine free not decaffeinated, so are not processed in the way that decaffeinated drinks are.

trishbindefeld profile image
trishbindefeld

I would recommend the Facebook Group - vitamin d deficiency - open discussion. Lots of excellent information in the files and very knowledgable members. In general GPs don’t have much training on vitamins and minerals and the stuff they prescribe is poor quality and full of fillers. . You are probably best going it alone in my opinion. Costlier but more beneficial! Good luck.

Have you had a bone density scan that shows you have osteoporosis or osteopenia? I would have thought your gp would have prescribed a VitD supplement alongside your medication.

peaklander, Michael Hollick, a US endocrinologist who has studied Vitamin D for decades, has written a useful book, The Vitamin D Solution. Since joining this site and learning about Vitamin K, I realise that our knowledge of Vitamin D isn't as helpful as it could be without understanding the importance of Vitamin K. I find it really helps me to know why a thing is good for me, rather than just being told what is good for me! It strengthens my determination, and helps to remind me to adopt and stick to a plan if I know the reasons why I should. :-)

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