 Posted 02/02/2012 16:59:38
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Very new to all this and still trying to work around the message system.!.from messages I have looked at lots of people seem to be on bits and supplements. I am on vit d3 2000iu daily bit nothing else. Some people seem to be on vit k and magnesium. Is this standard for OP? As in should I also be taking these vitamins?. Can any one advise me or suggest a book or web site to look at.
Thanks Gina
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Posted 03/02/2012 15:00:28
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| Hi Gina, I understand, it is difficult at first when you come on the forum, I felt the same. You can get a lot of information from Google (on a reputable site). You could just type in Vitamins for Osteoporosis. Better still you could ring the NOS helpline and talk to one of the very helpful nurses. Me for instance I take,Omega 3,6,9,fish oils, Magnesium,Calcium,Vit D, Vit K1 & 2 and a Boron supplement. It also helps to eat what I call an OP diet!! Healthy foods which includes lots of Kale, for me anyway, amongst other things too, with the occasional treats just to keep us smiling!! I have problems with side effects from most of the orthodox medication. It is difficult to know what to suggest for you as what suits one person does not automatically suit another. It means trying them out, which can be a bit expensive sometimes, but looking after our bones is so important. I wish you the best of luck, have a happy day. Rosiejay
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Posted 03/02/2012 16:35:05
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Roisiejay
Thank you for you reply. Asked forum because I would rather ask people living with the condition and what has been their experience rather than google because it is difficult to tell between the wonder drugs offered. I do understand what suits one person may not suit another but in general if most people takings these vitamins and supplements find them helpful then I will try. The best experts are the people who have to live with OP. I did look on OP site advice on diet but not on vitamins.
Gina
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Posted 04/02/2012 12:35:16
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| I start taking vits and minerals after reading about them and then, after a time, forget what I should be taking with what and when. For instance I know that Magnesium is best taken in the evening and not to take calcium at the same time as grains but not sure when to take Vit K and what other foods interfere with the vits and minerals that we need. I wish someone would create a list of what to take and when to help bones, or do they? If not, why not when it makes a difference to whether they work to their best advantage. Is it something the NOS could put together?
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Posted 04/02/2012 13:48:25
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SheilB
Yes! We need a guide about 'when to take supplements'!
Gina
You are taking a high (loading dose) of Vid D. Like you I take 2000 IUs of Vit D a day but under the doctors supervision (I get blood samples taken ever 3 months to make sure I am not getting too much Vit D). My Vit D level was 14.7 nmol ( it should be around 75 nmol- I think, AnneB will know!), and as it was so low I was recommended to take a loading dose.
But if your vit D levels are OK you may only need 100IUs a day (perhaps a bit more in winter).
Vit K is make sure that the calcium you do eat ends up in your bones and not in your arteries.
One supplement I do not take is CACLIUM - as a normal diet should provide enough calcium and to much calcium can cause damage. Anyway the calcium pills are calcium carbonate which is not hugely efficacious I understand. Calcium citrate it better.
Alkali diet - the argument goes that 'it has not been medically proven to work' so some people do not recommend it. But I do not care whether it has been medically proven to work or not - it makes sense to me to keep your body as alkali as possible and so avoid putting 'acidifying' foods into your body.
I found it difficult to work out on my own what to do - so I did go privately to a nutritionist and it was money well spent. After all I am going to be eating for the rest of my life - so I may as well find out 'what/how and when' to eat.
There are two books that I found extremely helpful:
Dr Marilyn Glenville (UK) Osteoporosis How to prevent treat and reverse it - this tells you everything that your doc never knew about OP and is very balanced.
Lara Pizorno - Your Bones - this is hard core non drug treatment - but excellent on supplements and exercise.
Good luck
Sarah
Tscore Lumbar spine -3.3, Femoral neck -2.6, Hip -2.2
Alkali diet (+ no caffeine/sugar/salt/rhubarb/spinach) and exercise and supplements of Vit D (2,000IUs daily), Vit K2 as MK7, vit K2 Menatetrenone, Cod liver oil.
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Posted 04/02/2012 14:04:48
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Sarah W (04/02/2012)
Gina
You are taking a high (loading dose) of Vid D. Like you I take 2000 IUs of Vit D a day but under the doctors supervision (I get blood samples taken ever 3 months to make sure I am not getting too much Vit D). My Vit D level was 14.7 nmol ( it should be around 75 nmol- I think, AnneB will know!), and as it was so low I was recommended to take a loading dose.
This website of vitamin D guidance for doctors is useful: www.imperialendo.com/for-doctors/vitamin-d-guidelines
I have my vitamin D serum levels measured every six months and the hospital lab says the reference range for optimal is 75 to 200 nmol/L
Sarah W (04/02/2012)
But if your vit D levels are OK you may only need 100IUs a day (perhaps a bit more in winter).
Do you mean 1,000 IU Sarah ? 100 IU is much too little even by conventional standards ! My serum level of vitamin D was 149 nmol/L last September and I continue to take 20,000 IU D3 every week which is the equivalent of around 2,800 IU per day and that keeps my vitamin D levels in the optimal range. I take less during the summer.
Sarah W (04/02/2012)
There are two books that I found extremely helpful:
Dr Marilyn Glenville (UK) Osteoporosis How to prevent treat and reverse it - this tells you everything that your doc never knew about OP and is very balanced.
Lara Pizorno - Your Bones - this is hard core non drug treatment - but excellent on supplements and exercise.
Just remember there is a misprint/typo in Lara's book regarding the risk of DVT when a person takes Strontium Ranelate - on page 188 it says 7% risk whereas it should be 0.7%. I contacted Lara about this and the error is being corrected in the second edition of the book which is coming out later this year I think.
Osteoporosis - Strontium Ranelate, Dekristol vitamin D3 20,000 IU/week, weight lifting, walking and vibration platform exercise, alkaline loaded diet, vitamin K2 MK-7 100mcg/d, K2 MK-4 5mg/d. Diabetes - Repaglinide, low carb diet and exercise. Congenital heart defect - Omacor and CoQ10
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Posted 06/02/2012 20:50:43
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Hi thanks for all your replies.
Sarah thanks for ref re Marilyn Glenvilles book think I will get it. My vit D was only 10 which I know is low. I should have had vit D injections but non available in country!. I took 300,000iu as loading dose in tablet form then since I have taken 2000iu daily. I have vit D levels checked every 3 months because I also had raised calcium and parathyroid levels.
A list of helpful vitamins rand supplements plus times to take would be useful to newbies like me.
Gina
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Posted 07/02/2012 21:46:17
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| Hi Gina. I too have raised calcium and parathyroid levels. I've had to have a loading dose of D3 because my level was low, but parathyroid problems are a contraindication for taking D3. I've had GPs disagree over whether or not I should be taking it. My course has finished now and I haven't been prescribed any more. I think I may ask to be referred to an endocrinologist. At the moment my calcium levels are being checked three monthly. I had hoped that taking Vit K2 as MK7 would put the calcium back in my bones, not in my arteries, but although my BP has come down, my calcium level has gone up! I am not allowed to take any supplements with calcium in. It's a job to know what to do for the best.
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Posted 07/02/2012 22:58:38
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Hi Elisa
My calcium and parathyroid levels were raised and I was investigated by an Endocrinologist. Scan showed parathyroid hyperplasia. She said this could be due to low vit D levels. Given 300,000iu vit D and calcium and parathyroid levels taken 3and then 6 months after. I now have normal calcium parathyroid and vit D levels after 6months. She was right about it. Maybe you need to see an Endoc rinologist if your GP not keen to treat. Endocrinologist said common reason for raised parathyroid and calcium is low vit D.you also need scan of parathyroids if level raised ask your dr.
Gina
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Posted 08/02/2012 14:35:58
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| Thanks Gina - so the higher calcim level after a course of D3 doesn't bode well! I think I'll make an appointment for a chat - she has offered to refer me, but for surgery, which I cannot risk because I am a professional singer/singing teacher and noone will guarantee they will not catch your laryngeal nerve in the proceedure which would leave me with only a whisper for the rest of my life. I think I need a more expert opinion, although my GP is very good, they cannot be experts at everything.
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