% risk of fracture on bone density result

Hello Mermaid, yes you're right, my GP had no idea what a T score is. As for treatment I didn't want to take bisphosphonates but as I was very high risk I had no option. The weekly pill of Alendronic acid which I was given initially had horrible side effects so after some discussion I was given the yearly infusion of Zoledronic acid, which I had in October.   I know weight bearing exercises are good and walking to strengthen the bones which I would love to do, but unfortunately I am still in some pain and cannot walk very far.  I am hoping I will soon be able to do more.  I will certainly see my GP and ask for a copy of my bone density scan results.  Thank you for your help. I do hope the supplements and exercises will work for you. I have read of many people having great results doing this.  Good luck   Brenda

Yes, Brenda, it's all a bit of a difficult conundrum and I can see that the % risk factor does guide people towards the bisphosphonate.

I also sympathise re the issue of pain, as I embarked this week on trying to do more weighbearing at the same time as reducing my thyroid meds (as the endocrinologist felt I had overdosed). Result - pain! Previously on higher dose - no pain and able to do more! I have actually reduced already, so I may have to compromise in order to stay active, and not reduce further.

Good luck re getting your scan result. You should really only need to ask the receptionist for a printout with luck.

If it's any comfort to you Valerie, my mother is 95 and has never had a bone density test done, but I can tell from her symptoms and loss of height that she does have osteoporosis, in her spine definitely and has probably had it for many years, as she was quite sedentary, and would not have been taking Vit D3. She tripped and broke her wrist about 6 years ago, but since then has been very careful and never broken anything else as yet. Interestingly, when they assess your risk they only seemed to ask me if a parent had broken a hip, not any other area.

Just to add to my previous comments - I am -2.8 osteoporosis and have been offered yearly injections having failed miserably with the weekly treatment as it did not agree with me. I did not take up this offer because I have serious teeth and jaw problems and having read other people's comments and advice on a way forward I am trying to go 'au naturel'!! by eating really healthily, (grass fed cows cheese, vit K2 et, nuts and avocados) as well as load bearing exercise.  I have a 2 yearly dexa scan.  I  discussed my current thinking with my doctor who is really supportive. He is monitoring my Vit D and calcium levels.  Just hoping I am not missing a trick by doing this - but have to say it feels good to try and fight it.

Thank you Anhaga.  I don't think I have ever had a sugary drink i.e coca cola and the like as they are not good for one anyway. You always speak a true word on these matters and  I always follow your postings as feel I have learnt a lot from them.

Thank you libsan - an interesting post, and you raise something that I had not heard of before - I believe that it's actually a Trabecular Scoring system not a scan as such - an additional way of scoring someone since apparently many people who have fractures do not in fact have osteoporosis as identified by bone density alone. i hope I have given that a fair explanation as I quickly scanned a few articles. This kind of scoring looks at the 'architecture' of the bone in a different way and can be done by assessment tools looking at the bone density scan. it does not appear to be done in the NHS - yet! At any rate if you put NHS and Trabecular into Google you only come up with one study on it, rather than it being practised anywhere.

I was interested that you had obtained bone density scans every 2 years, as this is what I was going to try for, from now on, but doubted that I would be allowed one on the NHS as they mention in 5 years on my paperwork. Is yours on the NHS or privately? I would be happy to pay privately next time, but I know ideally it should be on the same machine.

Thank you for that link to the risk assessment tool. I will certainly be giving that a go. I did see another online, but didn't think I needed to bother, as I am pretty sure that my 15% risk was worked out via one of these tools. However it will be interesting to try this myself and see what I come up with!

I don't think I could tolerate oral bisphosphonates in a million years as I have so many gut sensitivities and have to keep on a limited (though healthy) diet due to them all. As for having the infusions instead.... well I don't really like the fact that the drug apparently stops the bone being able to regenerate which is a natural process, while it's working so eventually you end up with all old brittle bone and no new bone. That must surely not be great re the bone strength, though may be good for the density.

Elsewhere on this site I found this study mentioned - but not sure if they will allow me to copy the link so if you put into Google - Bone Density vs Bone Quality and Cleveland Clinic, it raises some of the questions that you are talking about I think, and talks about such issues as as the bone architecture, and how the idea of Tscores were evolved from populations of md to late 60s white women who don't necessarily represent all those found with low T scores. Unfortunately as a 15 years past menopause, 64 years old woman it probably represents me rather well.

Hello mermaid, many thanks for your input.  You are probably right about the trabecular - I understand it is an additional piece of software which can be added to the DEXA scan computer and analyses the quality of the bone.  It gets carried out directly after the DEXA scan.  The software is £12,000 per licence and really useful apparently for those of us who are borderline cases and feel doomed if you do or doomed if you dont take bisophonates!

I have never had a problem obtaining dexa scans on the nhs.  When I was first diagnosed with osteopenia in fact they offered one after just 6 months of HRT.  This by the way put me back into the normal range.  From then on I have been offered and have had carried out a dexa every 2 years as a matter of routine.  However, after the phone call saying I had osteoporosis, I had the prescription and was told another Dexa after 5 years.   I understand this is because the bisophonates may not kick in until 12 months time for some, and then those that did not have the best results after 12 months then go on to have results higher than the norm.  I suppose we are all individuals is the answer.  

As I said in my previous post, I found this very worrying because if you have a chemical imbalance which is causign the op, then the bisophonates wont improve it.

Thanks for the Cleveland Clinic link ... going straight to it now!

Good luck.

Thank you for the info re the NHS and the frequency of getting scanned again. I am due to see my GP on Monday to discuss my results so I will see what she says, as I would like to be scanned again in 2 years to check my progress, which I hope will be in the right direction now.

It will be interesting to see if she has anything to say about osteoporosis other than prescribing biphosphonates, but I fear she will not have.

I have just found some more interesting research online which is pertinent to people who are hypermobile, as apparently it's a risk factore for osteoporosis. I am slightly hypermobile, though not severely so, but maybe it has affected me in the wrong way a bit. I might post it on here tomorrow and see if anyone is interested.

Yes, I agree with you Ashaga that the greatest risk is from falling. It does seem that this is not being emphasised enoIugh. It is good that you have a bones clinic you can attend. I don't think we have anything like that around here though I can ask!

The exercise you mention sounds useful, although would you not be bending the knees slightly and mine are my most painful part but I will have a go and see if I can improve it. Also as you say, it might be good to go to see a physio who can advise good exercises to do. Luckily I have no back pain at present, and I think my summer of gardening, and dancing that I do once a week is helping to keep me fitter than I was a few years back. I had a bad few years of ME/CFS when I often felt too ill to do anything much especially in the winter.

The clinic is only offered a couple of times a year at our local hospital.  I had to wait for eight months after my DXA scan to get in!  It was two sessions, each two hours, a week apart and was also live streamed to some smaller hospitals around the province.  There was an introductory session giving us background, explaining about the different kinds of bone, etc.  Then the good session with the physiotherapist.  The second week was a not so good session with a dietitian who was new to the program and did not seem to be very confident or knowledgeable.  The final session was with a rheumatologist, as far as I know the only one around here who specializes in osteoporosis and her entire hour was spent talking about the correct way to take the scary medications.  I tried to ask a few questions of her, but was rather brushed off. She seemed to be pretty full of herself and I felt quite insulted by her patronising manner.  So although it was an interesting event it was not quite as helpful as I'd hoped it would be. Really the best bits were the introduction explaining about trabecular bone, etc, and the physiotherapist with her tips on guarding the spine.  Otherwise I felt by then I'd done so much reading I already knew more than was in the presentations.  

As for your particular condition, I do in fact bend my knees, because the whole point is to avoid the forward bend of the spine.  Bur is you have knee problems then you'd have to work out something else.  Just try sitting down but with no chair there, and see if it's better than a straightforward squat - I certainly find it places less stress on the legs, but I don't have knee problems.  If you do have some specific issues I think it would be a good idea to have an appointment with a physiotherapist who could assess your needs and give you suggestions how to manage.  Dancing sounds like a fun activity and should be helping all your body!  

Today I had a lot of library books to return, so I loaded up my backpack and walked to the library, about 15 minutes.  After dropping them off I had a much longer walk with the empty backpack and kept thinking I had lost something I felt so unburdened!

After you mentioned these kinds of classes I did a bit of googling to see if anything like that is provided here. There are so many cutbacks in our National Health Service that I doubted it. It sounds as if it comes under Falls Prevention here, and there are a few hospitals that offer something, some in the London area, but nothing here that I can see (I am in Cornwall). They do hand you a booklet with info on the National Osteoporosis Society and so I will look up to see what they offer if anything.

Anyway, it sounds as if yours was a mxed bag, but better than nothing. At least it helps to focus the mind and good that it wasn't just on how to take bisphosphonates! I have been in touch with my medical herbalist now and she is keen to help me, and already is providing similar support for some other women in the same boat (she is also keen on suitable diet and exercise).

I am trying harder now to bend at the knees when I need to reach for something low down and I think it will become easier as I remember. The knee pain has actually been a bit of a bugbear this week when it isn't usually such an issue. It's a bit of a conundrum without help from mainstream medicine. I found myself with a diagnosis of ME/CFS on top of being hypothyroid some years ago, and did a lot of exploring of my gut issues, and healthy eating etc. I also began to question my thyroid medication and got myself off thyroxine and onto liothyronine which is T3 instead of T4 (as my T3 test showed I was low on that). Along with the other measures, I have slowly improved, and this year been able to exercise without much payback. Then the endocrinologist (had not seen one for 4 years and was dosing myself on T3 with advice from a book and an online group), muscled in and declared that my TSH was too low and there was risk of osteoporosis and atrial fib. Hence the bone scan!

I said I would try to cut back on T3 and indeed managed to cut it without too many symptoms by 10mcg which was nearly a 5th of my dose. According to him this was still not enough, and so this week I tried a little more cut (5mcg) and the symptoms were almost instant - terrible pain in my joints and muscles and any exercise went down the pan. I stuck this out for 5 days but now have gone back up to my previous dose, 10mcg down, and will see what happens next. Silly to cut and not be able to exercise and totally counterproductive. I think my GP will be understanding - going to see her on Monday to discuss the whole subject of osteoporosis.

I am off to dance today - we are all back after Christmas, but have had to do it with the aid of painkillers - not something I like to do normally! I try to keep away from them.

That's right, come to think of it I believe the sessions were casually called "falls clinic" although it had a more formal title of Dartmouth (my community) Osteoporosis Multidisciplinary Program or DOME!

My inspirational friend who helped me on the path to natural healing is a proponent of oat straw so you could consider that.  I believe it is high in silica.  Haven't tried it myself, but I keep meaning to look into it.  

It must be great to have an inspirational friend encouraging you on. I do feel a bit more positive than I did a week ago when I got the bad news. It was such a shock and it felt like a death sentence!

I was initially told I had osteoporosis.  My doctor only received the "summary" which included no t-scores or other numbers, only the risk factors, and recommendation for the usual calcium + D and bone prescription med.  I had a devil of a time getting my t-scores, and finally got the one one for femoral neck, which turned out to be in the osteopenia range.  I can still remember that day, how as the hours went by I felt lighter and lighter, and I have to say my whole mental attitude changed from then on.  I'd been feeling, puns not intended, shattered, not to say crushed, by the initial statement by my doctor that I had osteoporosis.  It did launch me on the journey of discovery, however, and for that I am grateful.  Also the fact that a subsequent DXA scan (one year follow-up) showed that I could successfully reverse things has been very encouraging.  And this time I've been given the full reports for both first and second scans with recommendation that next scan be in three to five years, no prescription drugs necessary!

Yes, it's interesting, that there is so much detail in the report and although it does feel a bit like a death sentence reading mine, I doubt that most people bother to even try to get hold of it. I have told a neighbour who is at the same medical practice to me that she can ask for a copy of it. She was only borderline but has been put on bisphosphonates as she is having treatment for cancer which could worsen things. I doubt that she has researched the medication, but it's a harder choice maybe in her shoes.

Funnily enough, MY Dr seemed to only get the summary also with no T-scores or numbers! She knew that something was missing and was going to get hold of it, but meanwhile I went into the Dr's surgery to ask for it. I just pay a small amount for admin costs.

So.... did you have the 3 scores as I have - the femoral neck one, the spine and the total hip? Were the other 2 scores osteoporosis, and the femoral neck was osteopenia? I just have osteopenia in the total hip and my other 2 show osteoporosis scores.

It's good that you managed to get another scan at a year. I am not sure that they would do that here, and I was aiming to ask for 2 years, and do as much as I can in that time to improve things. I have a siight concern still over the cause of mine. I also had a heel test done privately just 5 years ago which showed a minus 1.1 low risk for osteopenia, and if this was accurate (maybe not) then I have lost the bone in 5 years, and that would mean that the endocrinologist was right about it being caused by the thyroid med I am on. I cannot cut back more than I have as I get terrible pain, so I am in a fix about that one! (I have now cut it back a bit though).

My doctor received only the summary.  Which she misinterpreted.  She could have access to complete report through internet portal, but her practice doesn't use the portal.  I asked her to give me a letter to take to the imaging department when I went for my second scan asking that I be given full reports for both scans.  They didn't give it to me, but sent paper copies to my doctor's office.  There were two hip measurements and nine numbers in spine altogether but they scanned four vertebrae.  The recommendation after the first scan was for rescan within one or two years.  They also had recommended bone meds.  The second scan resulted in recommendation for rescan in three to five years, and no medication.  Another factor is my prednisone dose was down to three by second scan, had been ten when I had first one, so that's a risk factor we no longer need to take into account.  

Apparently the heel measurements are only useful in that they may show that you need a full scan.  Their measurement is notoriously unreliable and should not be used to determine your actual status.  The device was popularized by the drug companies and has been used to try to get more osteopenic women to take bone meds.  It's really quite appalling the way the public is manipulated by those who only want to make money. 

As for your thyroid meds, I don't think you should be risking your chemical health for the sake of your mechanical health, if that makes sense.  I think if I was able to turn my bone loss around while still on pred (I did not get below 5 mg for another seven months after that first scan and it's been shown pred can still affect bones even at that low dose) then I think there's a good chance you can also counteract the effects of the thyroid med.  As in the case of prednisone, you need what you need.

All of my scores were within the osteopenia range, or in the case of spine some of them aren't even that bad.  Except the trochanter was right on the osteoporosis number last year, -2.5, and is -2.3 this year.  They go by the femoral neck when telling those who are otherwise in the dark their t-score.  That was the number given to each of us at the bones clinic.  When I asked the rheumatologist why I couldn't get my spine numbers she said, "Because you don't need them".  I felt that I should be the judge of that!  Anyway I have taken this to mean they take the femoral neck to be the most important one and the one I've shared on here:  -2 improving to -1.6.  Happiness.