Hello, I'm actually posting on behalf of my mum. We are at a bit of a loss and shock, so I thought I would reach out to this wonderful community I've discovered.
Looking online there is soooo much information and being such a fresh diagnosis, you don't know what is true and what is not. I was hoping people in the know could point us in the right direction
My mum has been insisting for a DEXA scan due to a feeling she needed to check bone density. Luckily she did, as it has revealed L1 to L4 t score -2.8, left femur (neck) - 2.8 (osteoporosis).
Left femur total - 2.4 (ostopenia).
What do these scores mean (i have looked at the scale but find it hard to work out).
Firstly can someone tell me what the z score means?
My mum is 62, what does this all mean for her?
She is physically active in her job and managing her farm. She eats mainly well. Barely drinks alcohol.
I guess like all of you upon receiving her diagnosis is in shock and doesn't know what this means for her future. Can someone tell us what to expect? Is it reversible?
She has an appointment with both a specialist and an holistic doctor. The holistic doctor will be checking hormones, bloods etc. The specialist i assume will be pushing for meds.
What has everyone else done? Are there others this age that have managed to stay nice and strong into their 80s?
We are more a holistic type family, but open to anything and everything. I've read a bit about HRT - is that successful.
Sorry I'm rambling. I know lol. I'm a concerned daughter with a baby who needs his grandma running around with him.
Lastly, she has pain in her hips and back at the moment. She doesn't have any fractures. Could this pain be muscular? I have read osteoporosis isn't painful until a fracture? But genuinely no idea.
Thanks so much. I've read a lot on here and your replies are very kind xx
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Emma242424
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hi. I was diagnosed with Osteoporosis 9 years ago when I was 56. I year before that I was diagnosed with Coeliac disease so it all made sense.
I’m a very active grandmother, I mind my baby grand daughter full time. She’s here with me now so I don’t have much time for answering posts but I’m so touched by your concern for your mother and all the research you’ve done already. Well done you.
My advice would be to check for underlying conditions first. I didn’t have symptoms of coeliac disease apart from being borderline anemic. But there are other conditions too than can have a bad affect on our bones.
I did take meds for a year or so, bisphonates early on but got off them as fast as I could and regretted taking them. My bones have held well and haven’t gotten worse since I stated the coeliac diet and made small changes.
I make milk kefir and water kefir and I have those daily. I take cod liver oil daily. I have an exercise routine with weights I do every morning. I walk about 3 miles most days. I eat fresh and healthy. I enjoy a few glasses of wine at the weekend.
I’m not against meds but I plan to avoid them as long as I can, the side affects can be horrendous. I’ve seen These in some of my friends. I keep a check on my height. I got my husband to mark the wall and I plan to check it every year to see if I lose height. We lose half an inch naturally every 10 years.
Don’t panic anyway and tell your mam to relax. There’s people on here with far worse diagnosis and they are living active lives.
Be very falls aware. As in make your environment very safe. Get rid of falls hazards in the house. Be mindful when you are out walking and avoid trips. We forget we’re in out 60’s and we rush about. I fell over my dog recently but thankfully didn’t break anything.
Best of luck on your journey with your mother. I hope this helps. Best wishes Mary
Some very good points you made there.I put padding on my bed frame because I was always banging my legs on them and trying to keep the stairs free of trip hazards.
I also practise standing on one leg and use a wobble board.
What a lovely response - thank you. That has also given me confidence as I am also newly diagnosed and unsure of the future. It is so good to hear that you have managed to work on this without drugs... the thought of the Acid that everyone is talking about and its side effects is terrifying me. Thank you for taking the time to put a comment on and enjoy the rest of the Easter weekend with your family and grandchildren - you've brightened up my day if nothing else 😊
So sorry to hear about your Mum but unfortunately hundreds of women have Osteoporosis diagnosed every year. You need to contact ROS (Royal Osteoporosis Society) as the nurses are GREAT. They have all the latest information and advice.I am 81 and was diagnosed about 10 years ago but now know I obviously had Osteoporosis long before but didnt realise. How do you know your Mother has no fractures as you didnt say she had an xray of MRI scan?
Osteoporosis means finding new ways to live and enjoy living. I go on holidays abroad and long haul flights and I enjoy living. I'm not the ideal sufferer to advise as I have the disease very badly but have found ways around most problems. No it's not a nice disease but dont let your Mum get down about it, life is still for living but in a different way. Make sure the Consultant you see is totally experienced in dealing with Osteoporosis as they know what to advise on what to do and not do.
First I'd like to reassure you that if your Mum is as physically active as it sounds, then there's a good chance she has strong bones. Bone density as estimated from a DEXA scan is only a small part of the picture. It's normal to lose bone density as we age, but that doesn't mean fractures are inevitable. Unfortunately DEXA cannot measure bone strength, so by giving a diagnosis of osteoporosis based on bone density alone can frighten people into believing their bones are very fragile when they aren't.
T-scores compare bone density to an average 30 year old, giving an estimate of bone loss since peak bone density. But one person's peak bone density is going to be quite different from another's, and, the way the scan works, small-framed people will appear to have less dense bones than those with larger frames. The scan uses 2-D measurements to estimate 3-D density! Because we all lose bone density with age, t-scores will inevitably be negative, to reflect this. Scientists have grouped them into ranges, with anything above -1.0 being considered normal, -1.0 to -2.5 osteopenia, and -2.5 and lower osteoporosis. You can see from this that your Mum is only just into the osteoporosis range.
As well as t-scores, the DEXA report should have included z-scores and a FRAX fracture risk score. Z-scores compare bone density to average for your own age, and anything better than -2.0 is considered within the normal range for age. I would imagine your Mum's z-scores would fall into this range. The FRAX score (eg 10% risk of fracture in the next 10 years) includes a number of different fracture risks in the calculation, not just bone density, so gives a much better picture of whether or not to be concerned. Of course that's also not perfect, and is more reliable for a whole population rather than one individual, but it gets used to inform doctors whether or not medication might be considered appropriate. If your Mum doesn't have her z-scores and FRAX score, she can ask her GP's receptionist for a printout of the full report. It's possible to work out your own FRAX score:frax.shef.ac.uk/frax/tool.a.... Make sure you click on the drop-down list by the Calculation Tool at the top and select the correct country.
You're right that osteoporosis without fractures isn't painful. Unfortunately as we age we tend to develop all sorts of aches and pains, and also are often more prone to soft tissue injury. If a fracture has been ruled out and it isn't improving with time, then she needs to ask her GP to investigate the cause of the pain so that it can be effectively treated. Alternatively it can often be helpful to go direct to a physiotherapist, assuming she can afford private treatment.
You ask how others have dealt with the diagnosis. We've all been there with the initial shock and disbelief over the diagnosis! How we go on to deal with protecting our bones is probably different for everyone. I was persuaded to take medication initially, under dire threats by my GP of ending up in a wheelchair (or "worse") if I didn't! However, I gave up after a year, due to side effects, and would say now that my GP was VERY wrong to take that approach! I have now been over 9 years without medication and, after some trial and error, have been able to keep my bone density stable for the past few years. I've come to the conclusion that resistance training is one of the best things you can do, on top of the basics of a healthy diet with supplements as required.
Thank you as well....and apologies for jumping in on someone elses question. This is the first time that someone has clearly explanation on the scores. And another person who has managed this through exercise and naturally as far as possible. Can I ask whether you take any supplements as there are lots of people commention about the fact that we all MUST take K2, Magnesium and Calcium supplements... I can't help but feel that I get enough in my diet having done the calculations... but am I wrong - I am now taking Vitamin D as bloods came back showing a deficiency in that area.
Hi,Yes a diagnosis of osteoporosis can come as a huge shock.
What is most important in the early stages is to exclude other causes of low BMD. These can be due to insufficient Calcium in the diet, low vitamin D levels, they can be due caealic disease, rheumatoid arthritis, lupus, hyperparathyroidism and myeloma. Your Mum's GP will conduct further tests to exclude these other conditions before recommending medication.
Yes, osteoporosis can be reversed. I have been on Alendronic Acid and vitamin D for two years and saw an improvement in my BMD by 4.5 to 5%.
I have also been recently diagnosed with Normo-calcaemic Hyperparathyroidism . This was missed at the early stages due to the hospital where my blood was tested using a higher reference range than usual for parathyroid hormone. It only came to light when I had the tested at another hospital.
Your Mum should also tell her GP about her aches and pains. It will help the GP get the right diagnosis and proper care for your Mum.
Try not to worry (easier said then done) and not overthink things.
The osteoporosis website has an abundance of information and there are support groups at which your Mum can meet others and exchange experiences.
A very warm welcome to you and your mum — we're so glad you've found our community 😊
There’s such a wealth of kindness and support among our members, and we hope you’ll find it a reassuring space to connect and share.
Receiving a diagnosis can bring up all sorts of emotions, questions, and uncertainties. It’s completely okay for you both to take your time and go through the information at your own pace, so you can feel confident and informed in any next steps you take.
We have lots of support available on our website, including:
Our free helpline, where specialist nurses are available to talk things through:
I was diagnosed last year age 62 after requesting a DEXA out of curiosity. Finding out I had osteoporosis was overwhelming, as it is for most of us. I was strongly pressed by the pharmacist at the health centre to start a bisphosphonate but I insisted on seeing a GP first to ask for basic blood tests to rule out hyperparathyroidism, low vit D and celiac - common causes. I saw the GP armed with a factsheet I found on the ROS website saying that HRT was as effective as a bisphosphonate and, because I still had menopausal symptoms, she agreed I could start bio identical HRT patches as a ‘treatment’. This was 11 years after menopause. I’d stupidly thought that a natural menopause was best, knowing nothing about how HRT protects your bones. Something for your mum to consider.
Also, I would recommend having a REMS scan. Google Osteocan. This is an ultrasound scan rather than x-rays and it also measures bone quality as well as density. You get about a 45 minute appointment to discuss everything with lots of advice. I highly recommend it if it’s within your mum’s budget.
Lots of other advice about resistance/strength training has been given. Make sure she increases her protein intake and takes vitamin K2 mk7.
Good luck to your mum and please consider HRT for yourself when the time comes as I feel like women just don’t appreciate how much it helps your bones.
A single score of less than -2.6 gives you the diagnosis of osteoporosis. Women start losing estrogen at 50. The period of greatest loss of estrogen and because of that bone will be over the next couple of years.
Some think estrogen replacement is the answer and it can help, but it isn't possible to replicate the estrogen natural to out systems. And estrogen won't recover the bone that is lost.
Without pharmaceuticals your mom is at risk and will be at increasing risk of fracture both in the entire spine and in the femur. Only the lumbar spine is measured because the ribs are in the way in the thoracic spine.
There aren't that many osteoporosis medications. It seems like there are a lot because of the variations in bisphosphonates.
There are basically two types of drugs prescribed for osteoporosis: anabolic-- bone building and antiresorptive--those that collect older, fissured bone by preventing there resorption.
The anabolics : abaloparatide and teriparatide induce the natural method of bone formation. They encourage resorption and the development of new bone. They build the most integrated and resilient bone. I would try to get one of these medications if I were your mom. I understand that in the UK most patients are started on alendronate (AA). It isn't the best with a t score of -28.
There are two other medications called antiresorptive because that is their primary method of action. They do also add bone, but isn't integrated bone called remodeled bone. It forms more of a scaffold on the outside of the bone.
The z score compares your bone density to that of someone of your same age and sex.
I don't think you rambled. Even that she is active, running a farm, and running after a dear grandchild pertain. For some of us as we age and don't plan on being active the other medications might suffice.
Cheers to your mom for insisting on a dexa. Now, she needs an MRI. Both to look at her bones to be certain there is no fracture and to look at her discs to try and determine the source of her pain.
What you say about estrogen therapy (HRT) is in direct contradiction to my consultant endocrinologist. HRT is now an established treatment pathway for osteoporosis. There are many renowned women's health specialists on Instagram also hi lighting the importance of HRT in treating even established osteoporosis.
Hi Emma - thank you for posting on behalf of your mum. I am also newly diagnosed and still awaiting my first appointment with a rhuemotologist so I also am desperately searching for more information like you and your mum.
The more we can ask and share, the better. All I can say is my first two weeks after diagnosis were horrendous... as I was terrified of the future at 49 years old...about to turn 50....and I am in huge pain as I have two fractured vertabrae. With this group and the ROS information I am slowly starting to get my head round it...innevitably it is going to change our lives, but they won't stop. Keep smiling and enjoy every day 😊
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