I suppose I am hoping to get reassurance in some way but feel devastated by my third Dexa bone scan results after two years. My total spine is T -3.2 and T hip -1.4.
My previous scan results were Total Spine T -2..6 and T Hip -1.4.
I am awaiting a copy of the actual scan report.
Following my previous scan in 2020, I only took the Alendronic Acid tablets for a short while before I came out in bruises. The doctor gave me Risedronate tablets which I didn’t take because I was worried about the side-effects and also was convinced I could improve my bone density via a natural route. I researched lots of natural ways of healing, I was even getting positive information from other Health Unlocked users and I read the COMB reports to get advice on vit K and other recommended vitamins. I used a weighted vest, did weight lifting exercises daily, ate prunes, pumpkin seeds, healthy diet and daily walks.
I take longterm epilepsy meds ( I have controlled epilepsy) and these are known to cause osteoporosis but I am not able to come off these as the risk of my seizures returning is high.
Today’s news that my T score for my spine has got worse is devastating and I am frightened to be honest.
I am 61, slim and a bit of a worrier. I already have Ehlers Danlos Syndrome and Bronchiectasis as well as this. You can imagine how concerned I am now. I have discussed my concerns with my dentist too as I will soon be starting implant treatment. This will all be completed in December. I will not be taking any Risedronate until after the implant surgery and this has been discussed with my dentist and GP.
I have no pains or aches as yet and like to walk and be mobile.
I am reaching out to anyone who can identify with this worry. I have gone through the studies of these tablets and their side effects for the past few years and I have been dreading starting Risedronate. I was shocked to see the change in my spine scores this morning, despite my efforts to be fit and healthy and watch my diet. Now I see that the natural route didn’t work for me, despite all the research I did.
If you can offer any consolation or reassurance or anything positive at all to get me out of this awful sense of doom, please do so! I would greatly appreciate it right now.
Thank you.
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stillmovin
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Those results look very suspect to me! Why would your spine get worse and your hip stay the same? That's also too much of a deterioration in your spine in 2 years, so everything suggests an error has been made, especially as your hip measurement stayed the same. Even with your first scan, there was a large discordance between your spine and hip measurements. If your hip measurement is accurate, then you can argue very strongly that whatever you're doing has maintained your bone density, which is a huge achievement, as it's normal to lose about 1% a year. I would definitely query the results! If you're able to afford it, I would recommend that you get a REMS scan (ultrasound scan, more reliable than DEXA, recognised in the USA and Italy but not yet officially accepted by the NHS): osteoscanuk.com
That’s interesting! I will see the report soon so will be able to clarify if the GP actually read out the correct hip score as she could have confused that with the previous scan hip score. Thank you for mentioning the REMS test too. I’m not sure where to get one done but heard it referred to somewhere else online. I am v concerned about the big deterioration of the spine score myself. It was all done on the same machine as previous scans. Many thanks for your feedback.
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I can 2nd what Met00 has said. I had a DEXA scan which showed my spine at T -2.5. I worried about it for 5 years until I heard that the DEXA is prone to errors and I should get a REMS scan. I did that and found out that I don't have osteoporosis and my spine has a strong fragility score. Your results seem suspicious to me and warrant a 2nd opinion with a REMS scan.
I am very happy for you June25 that you don’t have osteoporosis after all and I am sorry you had to go through 5 years of worry before you found it out. I hope you informed the hospital that performed the Dexa scan of the error too.I am looking into my results further with the hospital. I do feel that the diagnosis of osteoporosis is correct in my case but not the actual t score. X
Hello again Met00I have posted a reply below to Kellycornwall but perhaps you could read it too. I am going to have a REMS in some months to come but I’m concerned that lower scan readings are deemed accurate.
Perhaps you and more other people who have had REMS could reply.
My bone score was -5.5 spine and -4.3 hips. I was on Terraparatide I’m now on Denosumab. I know there’s a lot of controversy about bone meds but I had no alternative. I’ve had seven spontaneous spinal fractures and a spontaneous foot fracture. My bone score is one point better now so it is paying off. I’ve not had any trouble taking any of it and I was pleased to see my bone score getting better. Of course I’m going to recommend you take something. You are not going to improve without it. I’ve got a friend on Risedronate and she’s been fine. She is on a scooter now and can’t walk very far at all. Her spine at the bottom is gone.
I can’t walk very far now. Washing up kills me and I can’t carry my handbag. It’s too heavy on my back. In fact I can’t carry anything in front of me. It’s your decision and only you can make it. But don’t end up like me. I’ve got a cleaner and I get my ironing done now. I have been classed as disabled.
Thank you for your honest feedback Mavary and I am glad that you are showing some signs of improvement on medication. You haven’t had an easy time of it and I agree that meds are important in all of this. It can be frustrating in my case when I see such a big deterioration in 2 years in my spine score and don’t understand how it happened after all my natural health methods I have been implementing. The main thing is that you are seeing a light shining through at the end of the tunnel and that gives done hope. Keep going you are doing well x
Thank you. I never got into knowing about what the side effects of medication was. It all happened so quick. Maybe sometimes that’s the best way. My spine now is -4.3 and my hips - 3.4. Which is different from-5.5 and -4.3. I’m happy with it. Most of my damage happened in a short time. I’d hate to see anybody in the same position as I am.
I couldn't take Aldronic Acid and now have prolia injections twice a year with no side effects there are options out there don't just except what they tell you do whats best for you
Hello stillmoving. I have been struggling with which medication to take, it’s very worrying when you read the side effects and I am allergic to biophosphates. I had a scan privately at the clinic that metOO mentioned. The dr was very helpful, you get the results printed out and explained there and then. He also went through all the medications and made dietary recommendations. I can’t remember how much it was, about £150. I also called the nurse at the Royal Osteoporosis Society and she was excellent. I have decided on hrt even though I am 75 as there is a move to using it for bone protection and I took it for 25 years following a total hysterectomy.
Thanks for getting back Nightingales and I am glad you are getting good help on your situation. I don’t think you mentioned how your t scores were shown at the REMS scan or if you did earlier, I may have missed it. Apologies if that’s the case. I’m just wondering if the REMS scan showed better results than the Dexa scans you had. Many thanks, x
I would also suggest that you have a REMS scan which provides you with greater accuracy than many DEXA scans undertaken and more info plus an opportunity to discuss your results in detail. I found my DEXA scan and subsequent diagnosis to be incorrect. This does not mean that all people scanned find the same. However, all people scanned will have a greater understanding of the condition of their bones including the “quality” of the bone itself which appears to be at least just as important as the density.
Hi stillmovin - I got a DEXA result of lowest T score of -2.6 and a diagnosis of osteoporosis. I was put on AA . Luckily I had a REMS scan 6 weeks after diagnosis and found that my hip and spine results were both -1.6. I do not have osteoporosis and I was advised that the “quality” i.e. strength of my bone was good. I stopped taking the AA meds following a discussion with my GP. Like many others on this site, I was shocked at my OP diagnosis and fearful of what lay ahead. I had a number of adverse side effects with AA and I was so relieved to be able to stop taking it. I wish I had never taken it. I have viewed this as a wake up call and I am taking action through diet and weight bearing exercise to seek to protect my bones.
The REMS scan has literally changed my life for the better and I cannot thank Dr Nick Birch enough. I know that not everyone receives such positive info following the REMS scan but everyone can be confident of the accuracy of the scan (unlike DEXA) and the explanation and advice of Dr. Birch.
Thank you and I’m very glad that you are pleased now with your results. I have now spoken to the Dexa scan department at the hospital and they have explained that the results are accurate and this difference between hip and spine T scores is common. She was very helpful and when I asked why this change should be so marked, given that I have been careful with my diet and taken on regular bone building exercise for the past two years, including using a Hypervest weighted vest, weight bearing exercises, regular walking and posture exercises, as well as dumbbell exercises, plus vitamin k2, magnesium, Vit c, d3 and Adcal, she explained that a referral to an osteoporosis consultant was the best line of action now. I have been referred by my GP.
Listening to others on this forum and their experience with REMS scan reports, I am certainly considering that as a second opinion. Hopefully, my results from a REMS will be better. I am not expecting to be told that I do not have osteoporosis however. That would set me up for major disappointment as not everyone who has a REMS scan is given osteopenia results which a Dexa scan previously showed as osteoporosis. I am realistic. I have had a fragility fracture in 2016 (hairline fracture in metatarsal), I have been taking epilepsy meds for 20 years, I have Ehlers Danlos Hypermobility Syndrome and my Body Mass Index is very low as I am quite tall and slim build. So, I have done my research both here on the forum, with the ROS and have had blood tests with my GP surgery to test for secondary causes. I have had problems in the past with lumbar back pain from Ehlers Danlos and this is a weak spot for me. I have seen the L1,2,3,4 scores on my last two scans and the Dexa Scan X-rays so I can see the changes myself. I am not blindly accepting scans and reports as I question everything.
However, I will go for a REMS and will wait patiently for the next available appointment nearest to me. I understand that there’s a long waiting list. I really don’t expect to be told that I don’t have osteoporosis however, given all of the above factors. My main concern is that I decided two years ago, following my first borderline osteoporosis diagnosis of my spine, that I would do my research and take the natural healing route, has not paid off despite my serious efforts. For that reason, I would like to open up this discussion to as many people as possible on this forum who have had REMS scans and who can relate to my experience of failing to manage their osteoporosis naturally. I’d just like to hear from more people. Do all REMS scans show better results, for example? And do we class ‘Better results’ as more accurate readings, simply because they are making us feel better? Please feel free to share your experiences with me, it would help . Thanks very much. X
I can understand your concerns, stillmovin, and indeed they were my own concerns for about a year after I first heard about REMS scans. I did some research, though, and am now confident that REMS can be relied on. I had a couple of DEXA scans some years back, the first gave t-scores of -3.2 spine, -2.3 hip, the second gave scores of -3.6 spine, -2.5 hip. I had my first REMS scan 15 months after the second DEXA, and it gave t-scores of -2.6 for both spine and hip.
A considerable number of studies have been done on REMS, and concluded that it is of similar accuracy to DEXA when conducted properly, but less open to error because it's more fully automated. The fact that Italy and the USA have both approved it for diagnostic purposes is reassurance in itself. Sadly the NHS has yet to recognise it; it's looking increasingly likely that they will do so eventually, but the timescale for this could be considerable. Yes, it's correct that it's common for DEXA scans to produce widely differing t-scores, but that doesn't mean they're accurate, it can equally mean that errors are common! And errors can be made in both directions - scores that appear to be worse or better than they should be. For this reason there's no guarantee that you will get better results from a REMS scan than a DEXA scan. For example, if you have arthritis in your hip, that could make your hip score appear to be better than it actually is. REMS scans aren't affected by arthritis in this way, so will give a reliable score for your hip. Here's a BMJ article that confirms this: ard.bmj.com/content/78/Supp... "These preliminary data suggest that REMS technique, which has been shown to have high sensitivity, specificity and accuracy when compared with DXA in diagnosing and monitoring osteoporosis [3], is not affected by the presence of alterated soft tissues composition. it would therefore be particularly useful for the evaluation of bone fragility in subjects at risk of osteoarthritis." It's also worth being aware that results from different REMS machines are comparable, with only a small margin of error, whereas DEXA results, having a large margin of error, cannot be compared from different machines. This weakness with DEXA in itself makes me question the reliability of DEXA results, for if you have a scan on two different machines and get different results, how do you know which one is correct (or indeed, whether either are correct)?!
Is there an ED support group where you can ask the experience of others who may have dealt with similar issues? I'm sure the natural methods you have been using have helped, but particular issues can certainly affect one's responses. And it is such cases for which I believe medications should be reserved. (People without comorbidities can perhaps more reliably expect better results from a non-medicated route. Maybe kind of like the difference when injured between needing surgery or physiotherapy turning out to be sufficient.) I assume that because you have a couple of serious health issues you have been checked for any other possible causes of osteoporosis, e.g. the parathyroid issue which sometimes is mentioned?
Thank you HeronNS. I will be asking my GP to check out secondary causes after our long bank holiday weekend we are now to have in the UK. Queen’s platinum jubilee of course.
I saw that you were getting a four day bank holiday! Actually got up at 6 am to watch the Trooping of the Colour, which was covered really nicely without any commercial breaks (unlike the Olympics).
Wow! You must like the Queen to get up early to watch the ceremony! Admittedly, it was very well done. The Brits know how to put on a great ceremony! 👑 👍 We are having the perfect weather here too for this jubilee. Thanks for your input by the way, it has been very helpful to me since I was first diagnosed a couple of years ago. I was so disheartened when I saw my recent spine t scores after all my efforts sans medication. Anyway, people on this forum are very willing to advise me and I have to find out as much as I can about my own special set of health conditions to give myself a chance of not deteriorating any further. X Jackie
My first glimpse of the Queen was in Kenya, 1952, when I was 4! Princess Elizabeth then, unless she had just become Queen. There was a very long delay while we school children waited and waited. I had been pushed to the back of our particular little corral by bigger girls, and had to jump very high to see her, but I did!
Best of luck with your health journey. Let us know how things go.
Thank you Met00 for such an informed reply. I am a bit like yourself in that I research and question these things. I will have a REMS scan but it is not until November, 7/8 months following my latest Dexa scan. In the meantime, I’m awaiting a referral to an osteoporosis clinic at my local hospital and I’m joining a local Osteoporosis Support group. I am puzzled as to why all my well researched means of natural bone building via special exercises and supplements and diet changes have allowed for such a deterioration in my spine T scores. This is what has knocked me for six, I must admit. Sometimes when we feel that nothing is going to help other than the awful bisphonates tablets, we can feel that we have lost any control of the problem.
I am pleased to hear of the accuracy of the REMS and from what I am reading here, Nick Birch and his clinic seem to be very helpful. It does make me very concerned that with Dexa scans, we are often being treated on the basis of erroneous T scores. How on earth can the NHS permit this to continue? Especially given the controversial side-effects of that medication. I am keen to talk to another ROS nurse on this subject and indeed, to the Osteoporosis Support Group as well as the local hospital Osteoporosis consultant. From my conversation on the phone yesterday with the Bone Densitometry Technician where I had most recent Dexa scan, I have the feeling that they are all going to support the standing of the Dexa scan system. And why are they saying it is accurate if these published reports are showing that the Dexa results aren’t accurate? That’s a question I find puzzling.
Again, I am hoping to hear from more people on this forum of their t score results from REMS and DEXA machines.
Thanks so much for taking the time to give me your feedback.
It sounds to me like you have great faith in the NHS and the people that work in it, so much so that you are perplexed, even shocked, by the conflicting evidence that is now before you. I could offer an explanation to your questions in this area but I doubt that you would be convinced by anything other than your own research, which luckily you seem well able to undertake.
I do hope that you find the REMS scan useful. Have a look at the sample reports on their website. I like that they provide more measuring tools than just T scores. I have personally found my Fragility Scores to be most helpful in dispelling the feeling that my spine could crumble at any moment with one wrong move. And don't give up on your natural bone building techniques just yet. They may yet prove to have saved you.
Please go ahead and give your explanation or findings June25. I am definitely not locked into my own research! In fact, it is through listening to others on this forum in the past years that I have been guided to read up on various studies on natural bone building etc. That is how I am learning how to manage my own case. Perhaps I gave the wrong impression in my post. I am inviting people here who have had REMS or who know a lot about it to help me out. Not really sure if you picked up the wrong tone from my previous post.Thanks.
If you really want an explanation then I offer the age old one - follow the money. How much money is there in it for Big Pharma to have their osteoporosis drugs prescribed? How much money is there in it for anyone if you choose natural bone building activities? Who pays and who gets paid for research which dictates the drugs that the NHS will or will not prescribe? Who teaches the people who become the foot soldiers who administer the DEXA scans and write the prescriptions in all sincerity? And what happens to the doctors who don't always agree with the rules laid down by the General Medical Council?
I'm not saying that the osteoporosis drugs that we have are not useful. I know that many people are glad of them. I'm saying that I think it would be naive to imagine that the NHS is there primarily for the good of the patient. This may be true, especially in emergency care, but for many chronic long term conditions which receive a lifetime of prescription drugs it may be doubtful.
I used to see a wonderful endocrinologist for my OP. He listened and agreed with me when I did not want to take prolia. He retired unfortunately but stayed on purely to train radiographers to read Dexa scans correctly and report on them which he said takes time and there are not many medics available/have the knowledge to give this training.
I believe a Dexa scan report is all down to being positioned correctly in the first place and the person administering the report being well trained to produce an accurate report from the information gained from the DEXA. I am not convinced this is usually the case.
From all the anecdotal evidence I have heard you are right. Not only is the accuracy of the DEXA scan dependent on the operator but also dependent on the machine used. The REMS scan is not dependent on these factors and to that extent is more reliable.
How fortunate you were to have this wonderful endo. I find it notable that the best doctors seem to become so when they near retirement, which also happens to be when the threat of being struck off the register loses its power.
June25, I firmly believe Big Pharma are behind the pushing of drugs for osteoporosis…. which have pretty nasty side effects, I should know…(was on Prolia and because I wasn’t warned about rebound fractures I now have insufficiency of the sacrum, am in agony and losing my mobility) and I agree with your analysis of the situation regarding the NHS. Why would they not accept the fact that the REMS scans are more accurate than the DEXA scans and change their diagnosis tools. Of course the cost of changing their scan machines must be a factor but I believe it isn’t the only factor.
One feels pressurised to take such dreadful drugs - although I understand sometimes one has little choice - and I was made to feel rather scared by refusing to go ahead with a treatment. Not sure what I might do at a later date though.
Thank you for having the courage to say what many people think.
This business of Prolia and rebound fractures is a SCANDAL. I am so sorry to hear that you have suffered because of this now notorious drug. It beggars belief that Prolia is still being prescribed without warnings and without appropriate care for when it is withdrawn. The law courts should be full of law suits for medical negligence about this.
Indeed Prolia is so dangerous and YET the endocrinologist I saw 2 years ago still suggested I should go back on Prolia! Unbelievable…. This is shocking and a scandal. Money and Big Pharma…. People need to be aware.
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