Hello everyone, I've just discovered and joined this community, thank you for having me, I have copied and pasted the post I had earlier posted on the Afib community page... ......Hello everyone, I had a DXA scan this week and the GP has said I have osteoporosis in my lumbar spine, I was shocked, I have no knowledge of it but I asked her how severe and she said they don't give levels???? I have to take 800 IU Vitamin D3 and need to get weekly medication ( not sure what, was too shocked to quiz her) starting when I return from my trip away, approx 4 weeks time, just wondering if the D3 will affect calcium levels and in turn affect the Afib, I'm in such a muddle and having had a few episodes of Afib in past month I am very anxious, would appreciate your advice please, I take 100mg Flecainide X 2 and 2.5 mg Neblivilol daily..... Many thanks.
New diagnosis,osteoporosis of spine... - Bone Health and O...
New diagnosis,osteoporosis of spine...
Hello Jo-hannah and welcome to the community. The original diagnosis of osteoporosis is such a shock, isn't it? Your GP should give you the t-scores from your DEXA scan, with the average spinal score being more important than for any individual area of the spine. Were you sent for a scan after a fragility fracture (one that wouldn't have happened to someone with "normal" bone density)? I suggest you ask your GP for a copy of your DEXA report (if you're in the UK, you have a right to this), which will give you your t-scores and an estimated fracture risk, based on the scores together with other factors, such as your age, whether you've had a fragility fracture, whether you're taking certain meds, whether a close relative has osteoporosis.
You're right that Vit D3 is linked with calcium. It increases calcium absorption, which you then need to make sure ends up in your bones rather than in your arteries or causing kidney stones. Many people advocate taking magnesium and Vit K2 supplements along with D3, though it's unlikely your GP will know anything about this.
You might also find it helpful to talk to one of the helpline nurses at the Royal Osteoporosis Society: theros.org.uk.
Thank you so much Met00, I asked the GP to refer me for the DEXA scan as I had never had one, never had any fractures! just muscle aches and pains in my back and sides, then today I got this shock result....I need to learn more about it now and your reply has been so helpful....I will go to the surgery tomorrow and ask for a copy of the report..... I will also contact the helpline, hopefully there is one here in Ireland, I will look it up....Ah! well another learning curve to deal with, I thought Afib was enough to cope with, I will let you know how I get on, this site HealthUnlocked is a gift....so grateful for it and for all you lovely people who take the trouble to reassure and respond, I can't thank you enough!!!
Hi Jo-Hannah. I’m from the north of Ireland and have been down this road 11 years; like you I got a big shock when I first learned of the diagnosis. There was so little help and information then but the little I gleaned from the internet and from American websites (who were further down the drug road) frightened me off the drugs. Very often it’s people with osteopenia, the precursor to osteoporosis, who end up with broken bones. You do not have any pain with osteoporosis until you actually break a bone so try to find the source of your aches and pains. Also losing bone density is a normal part of ageing, the dexa scan results being compared to the bone density of thirty year olds. In saying that very low scores could suggest that there is some imbalance in your system. Thank goodness the medical approach seems to be leaning now towards a healthy lifestyle, proper supplementation and exercise although when I looked for a dexa scan recently my doctor said if the results are below -2.5 they were obliged to offer drugs so I didn’t go for it especially since the doctor told me I was doing the right things. The Royal osteoporosis Society has very good advice for exercise in line with Canadian guidelines (ca...I think). Keep reading here for plenty of advice on osteoporosis and just don’t delve straight into accepting bisphosphonates without consideration. I found the book “Your Bones” by Lara Pizzomo useful, also the website and blog “Better Bones” and melioguide.com, having bought and used Margaret Martin’s book “Exercise for Better Bones”. You have the irishosteoporosis.ie and a private provider Osteoporosis Clinic Ireland. I have broken no bones in the last 11 years but I worry as I approach my mid 60’s and if necessary in the future I will take drugs which at least are more regulated now. In the meantime I’ll keep up my active lifestyle of walking and hill walking with a weighted vest, ceile and barn dancing, Pilates and some weight training.
Thank you so much Jessie, have just posted results there, could you take a look please....will respond to your very kind reply later, xx
Thank you Jessie, I appreciate your information very much indeed, so helpful, I have A fib for past few years and well medicated, so I am wondering if there could be some imbalance in my system, as the list is as follows, High cholesterol, Atrial fibrillation, and now Osteoporosis, how did that happen!!!! so glad I found this site on HealthUnlocked, many thanks Jessie.
Hello again Met00, I have the short report, relevant info looks like....Bone mineral density lumbar spine 0.78grammes/cm2 (T-score -3.9) lowest single reading is T-score of -4.5 in the fourth lumbar vertebra. Vertebral height preserved on lateral scanogram. T-score of -1.9 in the necks femora. The surgery just called to say they have the long version ready for collection, would very much appreciate you opinion on this reading as I am completely new to it all and still in shock, many thanks, Johannah.
I’m really no expert on this but a score below -2.5 is considered to be osteoporosis. I haven’t had a repeat dexa scan in those 11 years and I’d imagine with age my score in the spine of -2.5 has well and truly gone down. I did read that a few years after menopause the levels even out and settle down; hopefully that’s true! The drugs they give do not build good bone nor bone that gives flexibility which is what we need for everyday life. Bone tensile strength is what is sought after provided by good nutrition and weight bearing exercise. A lady I know was told by her doctor 11 years ago that she would break bones right, left and centre if she didn’t take the drugs. She took them for 10 years and has since broken bones and then had to come off the drugs as they were affecting her kidneys. Now you are no longer on them for more than 3-5 years before given a rest or a different drug. I also know a lady in her late 70’s suffering horribly from osteoporosis but I do not know her history. It’s up to the individual to make his or her choice. No one can tell you what to do or how to do the right thing. As for me I’m staying with my route and if I do have a break then I will take the drugs or I may even take the unapproved strontium supplements you can buy over the counter but that’s a story for another day!
Thank you Jessie, I have a lot to learn and with the help of kind people like yourself I will get through this, my treatment options will be given to me in 4 weeks approx when I return from a trip abroad. My A fib diagnosis was a shock and now this, it feels like a bad dream, but I am going to take the positive approach from now on and count my blessings 
Knowledge is power and I will take your advice on books etc., Best wishes and have a good day, if you're ever down this way give me a call.
Hi Jessie1234 - just to mention that Strontium Ranelate is now available for prescription on the NHS - though it would not be recommended for anyone with heart problems
Ah, so it's been reintroduced! One to keep in mind, thank you.
Hello Jo-hannah. Yes, I understand the shock, and remember reading my initial DEXA report 4 1/2 years ago, which told me I was at high risk of fracturing in the next 10 years - initially I was terrified I would fall and break my back, but I now think this is highly unlikely for me at my age (now 62) and level of fitness! T-scores compare your estimated bone density with that of an average 30 year old with "normal" bone density, in other words giving an indication of how much bone you've lost compared to that average 30 year old. Everybody loses some bone density from around age 40 onwards, so Z-scores, which compare with the average for someone your own age are probably more useful, but even these have limitations (see below). T-scores of -1.0 to -2.4 are classified as osteopenia, t-scores of -2.5 and lower are osteoporosis (because they're negative numbers, the larger the number, the worse the score). Your hip t-score is in the osteopenia range and your spinal t-score is osteoporosis, but many of us believe that t-scores (and z-scores) don't give an accurate picture as they estimate (it isn't even 100% accurate) bone density, but don't measure bone strength. That's why you need a fracture risk figure as well as the t-score, but even that is only an estimate - an average based on the population at large, rather than necessarily accurate for any one individual. To give you a better idea of what I mean I've come across someone with a t-score of -6.0 who has never fractured, yet there are others with t-scores in the osteopenia range who have had multiple fractures. Whether or not to take meds is a decision you'll need to make, based on the relative risks of taking or not taking them. Some people increase their bone density and stop fracturing while on meds. Others continue to fracture, despite the meds, and some get nasty side effects, although I believe this is only a tiny minority as far as the worst side effects are concerned. I have a spinal t-score of -3.6 and have made the decision not to take meds for the time being and hope to improve my bone density with a range of supplements, bone healthy diet and weight-bearing exercise. If I didn't keep getting soft tissue injuries (unrelated to osteoporosis) I'd be working with reasonably heavy weights by now, as that's one of the most effective ways of building density (this is advised under the careful supervision of someone with expertise/qualifications in osteoporosis)!
I hope you enjoy your trip overseas and can forget your osteoporosis diagnosis while you're away. When you do see the doctor, whatever he recommends I would suggest asking him for time to consider your options, and then do a lot of research before agreeing to anything.
Hi Met00, again thank you so much, I am beginning to get a clearer picture now and I will try to tune out and enjoy my break away, when you get time you might let me know which supplements you take(no rush). I will look into the possibility of taking up supervised and appropriate weight work, walking is probably why my femora are ok ish, I swim a lot but I realise this is not weight bearing, I wish you all the very best with your own programme and I will keep you updated on my progress, the only thing is that it is silent unless a fracture occurs, whereas my A fib can be very debilitating when I have an attack....Ah! well, I guess it is count my blessings time again and HealthUnlocked is way up there for sure..... take care Met00 and heartfelt thanks to you and to all.....
I'm probably not the best person to advise on actual supplements Jo-hannah, as many people insist it's really important to choose ones that don't contain any additional ingredients such as fillers. I'm not convinced by this argument, except where an additional ingredient causes side effects. For example, I raised my Vit D level significantly, taking 2400iu of Fultium D3, prescribed by my GP, which many have slated as "rubbish". I have to add that I've stopped that now, due to one of the ingredients potentially being carcinogenic, but not due to fillers as such, which, from what I've read, are there to bulk out tablets and ensure that it reaches where it's meant to before breaking down too soon (or too late)! So I now look for cheaper supplements from reputable sources, for example being quite happy with tablets where others say we should be taking gel capsules. My most recent Vit D3 reading, on 4000iu of a highly recommended capsule, was actually lower than a year ago on 2400iu of Fultium D3!
Jo-hannah, just a thought. I know little about A Fib, but think it's a heart condition. Are you on blood thinners for it? If so, you need to check with your GP or pharmacist whether Vit K2 is suitable - I've only seen it contraindicated with warfarin, but best to double-check. Having said that, your GP probably hasn't heard of K2, so you may need to go equipped with some info about it, especially that it isn't the same as K1! Also, K2-MK7 can cause palpitations for some, so K2-MK4 would be a much better choice for you if it is OK for you to take K2.
Thanks Met00, I will keep that in mind, I really need to do my homework on K2, I am on one of the newer anticoagulants called Xarelto, I will let you know how I get on with the GP, thanks again for taking the trouble to give me all this information.
I'm pretty sure it's only warfarin that's contra-indicated, but I'm not medically qualified so please don't rely on this!
No problem Met00, I will check it out, thank you...
I couldn't take K2 -MK7. After a number of sleepless nights I finally figured that I couldn't tolerate it. I then got K2 - MK4 capsules from Amazon and I couldn't tolerate the fillers!! Sorry Met00, it's the first time it's ever happened to me! Eventually I bulk (4 tubs) bought a good quality supplement from a small American family run company called Relentless Improvement. Even with postage they worked out at roughly the same price as the ones I got from Amazon! Jo- Hannah, I'm about Donegal a lot as have a mobile home in Rossnowlagh. I think we can message privately here too. As Met00 says, forget about all this and enjoy your holiday. You'll be ready for it.
Interesting. This article explains why some people are affected that way: healthline.com/nutrition/vi...
One thing to watch for - that the supplement be derived from non-GMO soy (in the form of natto).
I think Metoo is right, the newer blood thinners are not affected by either Vitamin K1 or K2. In any event K1 is more significant in blood coagulation while K2 works with calcium, sending it to the bones where it belongs so it doesn't settle on the walls of blood vessels or into organs.
Just for a start:
So, Met00, if I take D3 with Calcium and the safest K2 for me(bearing in mind my Atrial Fib) AND magnesium I could be helping the osteoporosis? also many A fib people take magnesium to improve their condition, as a lack of it causes heart arrhythmias!!! I am thinking that a lack of magnesium could be the underlying problem for both heart and bones!!! Sorry to bother you again, just that I am trying to make sense of it all.....wonder also if I take a good multivitamin and top up with the ones mentioned and of course eat well and weight bear exercise.....I would appreciate you thoughts on it whenever you get the time, no pressure, thanks a million....forgot to mention that I don't tolerate magnesium very well as I've previously tried it on it's own for the A fib, and of course a bunch of other meds prescribed by my cardio for same, which I hate taking but they keep me in sinus rhythm most of the time.....
That's what they say, but I haven't proved it for myself yet - will have to wait for my next DEXA scan in a couple of years' time. Heron reversed osteopenia by this method - she should be able to give you the link to her story. Please do check that K2 is safe for you though. I also take boron, Vit C and zinc, think there's evidence for boron, not quite so sure about the Vit C and zinc. I also eat lots of nuts and seeds, drink kefir daily and limit my sugar (I ought to cut it out, but haven't quite achieved that)!
Thank you Met00, very useful info, I will check the K2 before taking it, did you choose not to take the medication? I can understand if you did, I hate being on mine, but the arrhythmia can be quite scary and so I take them regularly as clockwork through fear I guess......long story though and hope to have a left atrium ablation in time....and I will try to avoid taking meds for the osteoporosis but I'm not sure if my T score might be too high.....can I buy kefir or do I have to make it ?
I will ask Heron for the link to her story, you guys are all amazing......
Yes, I've chosen to avoid meds, though did try Alendronic Acid (for 2-3 weeks) then Risedronate for a year, but neither agreed with me. Your spinal t-score isn't much worse than mine and your neck of femur is better than my hip score (I don't have my femoral neck score), so you might be OK to try without meds first if you want to choose that route. I'm not totally anti meds and know some people do really well on them, but am not sure what I'd be happy to go on - just hoping there's a better one available if I do eventually need to take something! If you do decide to avoid meds for the time being, you may need to be quite assertive with your GP, so do your research so you're confident of why you're making your decision. I wouldn't refuse meds for other conditions, but for me, without fractures, I'm not totally convinced by the osteoporosis diagnosis. There was a time when it wasn't diagnosed till you have a fragility fracture, but now they're trying to second-guess your risk of fracture with DEXA scanning and FRAX risk assessment. Of course, I can understand the desire to prevent people from fracturing in the first place, but the main approach using bisphosphonates only works for some people. I don't know how old you are, but some people swear by HRT, particularly using patches or gel, which is no longer considered to carry the risks it was once thought. HRT replaces lost oestrogen, which is needed for bone health, so can be very effective, but possibly not when (as I am) you're 14 years post-menopause!
You can buy kefir in supermarkets. I usually make my own, but sometimes buy it from Tescos. Making it is very easy, you just need to buy the grains and add milk. You start with about 1 teaspoon of grains and they keep growing, so you keep re-using them. But it would probably be a good idea to buy some ready made first to make sure you like it.
Good luck with all of this.
Met00, what a blessing you are with all this information, I am taking it all onboard and I'm truly grateful, I am way past the menopause as well and so HRT is out for me. I've not had any fractures either, I get a lot of aches and pains in my back from time to time which I just put down to wear and tear.... my lumbar spine is and always has been noticeably curved inward, never did anything about it but it's funny now that the osteoporosis shows up in exactly that area!!! There was no mention of the rest of my skeletal system, no pictures, no scores, nothing!!! I am so confused and still a bit shocked, only for your good self and the other ladies on here I don't know what I'd do.....you are all angels, you really are!!!
It's thanks to this site that I too discovered there's so much more we can do for osteoporosis than just take meds. I remember the shock of my diagnosis, thinking only old people get osteoporosis and wondering how it could possibly have happened to me before I even turned 60! Like you I get a lot of back pain, mine due at least in part to a slipped disc 20 years ago, so I was already used to taking precautions to protect my back, which definitely helped me as I didn't need to take any extra precautions following diagnosis. As far as the DEXA scan is concerned, usually in the UK they just scan one hip and the spine, as these are the areas that can sometimes cause so many long-term problems if they fracture, and of course osteoporosis in either of these areas suggests its likely to be elsewhere in the body too. However, as I said before, I don't completely trust a diagnosis of osteoporosis if you've never fractured - yes, t-scores can show less dense bones, but they don't necessarily show weak bones. On the other hand, if bone density continues to decline, clearly the risk of fracture becomes greater! I try to remain positive, taking the attitude that if, for example, you have a 30% risk of fracture, that's still a 70% chance of not fracturing!
Yes, we need to look on the bright side Met00, I hope you had a lovely week end, you deserve it after all the help you gave me I have calmed down a bit now and am putting it all on the back burner 'till I return from my holiday....I'm taking my D3 of course and eating way more healthy diet, I will let you know how it all goes when I've seen my GP....thanks a million!!!
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