To think osteoporosis is shockingly sidelined by healthcare professionals in the UK

[Pavementworrier]

My mum was recently diagnosed. That in itself isn't such a shock - the bigger shock was that the treatments available are pretty limited with potentially significant side effects. And now I think about it there are things we should all be thinking about to try to limit our own risks. It's easy to forget when young that strength starts with our bones.

More than half of women in the UK will have an osteoporotic fracture and there is risk even if you never have vitamin d deficiency (which almost all of us will at some point). Some medication and food/drinks can put you more at risk but this is never taken into account in prescribing.

Reading today about the plan to give puberty blockers to 200 kids and then follow them for four years. Four years is not enough - osteoporosis is a huge risk of adjusting adolescent hormones and the people conducting the study have a duty to the children for the rest of their lives. What measures will be taken to monitor and protect their future skeletons? I bet none.

Anyway if you are reading this, however old you are, please think about vitamin d supplements, regular exercise and strength training and taking a dexa scan in your forties.

HRT supposedly offers great protection - I am 44 now and not sure when to start for best effect. My periods are irregular but otherwise I feel fine. Would be great if someone would start taking this disease seriously and work out the optimal starting moment!

I think the whole thing with running is that you don’t ‘shock’ the bones enough. Running with good form involves absorbing much of the impact, rather than landing ‘heavily’ iyswim. So activities like tennis, which involve explosive takeoffs, and abrupt stops and turns, especially combined with sideways pressure is beneficial.

I've got really bad osteoporosis and the hospital didn't even bother to tell me! They also said the only medication for it was an injection once a year that can make all your teeth fall out. As that's a massive phobia of mine I got scared so declined it.

But they never actually said the words 'you have osteoporosis. Your t score is minus 4.7' I had to email the secretary for them to send me the t score. And they haven't spoken to me about it since. This was 3.5 years ago!

That's nonsense, you can take alendronate once a week and you will find out long before your teeth fall out that you can't continue it. My teeth hurt too badly to chew but they were right as rain after 3 weeks off the drug.

That's a really bad score, it's out of 5. If the doc won't give you anything I strongly suggest you start taking the maximum dose of one or more of the common supplements that prevent osteoclast formation. MSM, liquorice root, curcumin (not turmeric).

Good luck!

Thank you. Yeah I thought it weird the guy said that. And that they had no comment on how low my t score was. I was only very early 40s!?

I am healthier now and do take lots of prescribed vitamins. But will try those supplements you mentioned.

I just asked my GP, but I’d had an x-ray that was suggestive of osteopenia.

Good point.
It is not something that even crossed my mind. I've bee on the mini pill for a very long time.
It would be useful to know if it affects bone density and to what extent.
Only recently I read somewhere, I can't remember where, maybe it was a podcast not an article , that breastfeeding depletes calcium stores and those reserves cannot be replaced. I had no idea and I didn't do anything special to help this during breastfeeding. I did drink lots of milk whilst pregnant but no idea if that did anything useful or not.
The scans should be offered to all women from the age if 40 I think. Before menopause sets for most women.
The current thinking I noticed from some American doctors is that starting HRT within 10 years of the onset of menopause does prevent osteoporosis to a degree (amongst other health issues such as heart problems).
Nobody knows anything and there is no consensus or real up to date guidance.
This thread is very useful OP.
Bone health should be taken seriously and from an early age for all women all over the world.

At 63 I was knocked over ("had a fall" in old-people speak) and broke my shoulder. As I was over 55 and broke a bone from a standing fall I was referred for a Dexa scan which happened about 9 months later. The scan found osteoporosis and osteopenia in my lower and upper back (I forget which way round)

So now I am on weekly alendronic acid tablets and daily Vit D but not calcium as the hospital did a diet check and said there was enough in my diet. The dentist needed to know and wanted to make sure my teeth were in good nick before I started but it hasn't harmed my teeth as far as I know. The injections are mostly used if you can't take the tablets.

I also asked the physio who I was already seeing for my shoulder and she pointed me at some weight-bearing and strength building exercises. Muscle strength (especially back muscles) helps avoid bone damage. Strengthening spinal muscles is important.

There is a lot of good information and especially exercise guidance on the Royal Osteoporosis Society website.

If the hospital told you a bisphosphonate would cause your teeth to fall out, it shoukd be reported to the Trust's clinical director.

Zolendronate (infused) has a vanishingly rare side effect of causing something called osteocronosis of the jaw, whereby a bad tooth or invasive dental procedure can cause the site not to heal. My rheumatologist, world leading, told me it usually happens (in teeny tiny numbers) in people who have severe diseases and metatastic tumours in the bone for which they are receiving zolendronate much more frequently than once a year and are much more acutely ill than an otherwise well person with osteoporosis. It's about risk assessment and for 99.9% of people the risks arising from a fracture are significantly greater than developing osteocronosis of the jaw. It is however, important to maintain good dental hygiene and get any major work done before starting it, and to see the dentist regularly.

I do agree that HCPs chat shit however. I recall my GP tellimg me that the best thing I coukd do was go for a run every day. I pponted to the boot I was wearing. The most important thing for me is gentle weight bearing exercise, gardening and strenuous housework as well as a brisk walk for 30 minutes. With dyspraxia and osteoporisis I need to avoid activiities that could result in a fall and that also could damage my joints where there is already evidence of arthritis.

Lifting weights needn’t be dull.

Try Caroline Girvan.

Turn down the sound/music and listen to podcasts, Classic FM, Radio 4, whatever.

Best possible start to my day.

NB: I’m in my 70s….. and it’s so worth it.

How do people listen to podcasts when they exercise? I could go for a run (though I'd have to be super careful crossing roads) or do half an hour on the cross trainer with a podcast but not weights because I can't remember which exercises I've done or how many!

Well I don't walk the dogs without wearing headphones and a podcast or music.

I love lifting, I had to stop running so it's all I've got!

I recommend Bodyfit By Amy on YouTube. I'm 47 and I've been going her workouts for 6yrs.

You need to be doing weight-bearing exercise, in fact we all do, HRT or not.

I had an osteoporosis diagnosis at 52. I managed to reverse it to osteopenia in 3 years mainly through diet and exercise (although I did take medication for 10 months too).

I found I had to pretty much research it all myself. I managed to see a specialist nurse at one point and she said I should avoid heavy weights and only do resistance bands! This is despite the fact that my osteoporosis score was only 2.6 and so I think it was pretty poor advice. The Royal Osteoporosis Society are great though and you can speak to an osteoporosis nurse on their helpline.

Im a PT and I work with many menopausal women. HRT does work but so does really regular well designed weight training programmes, decent calcium and D3 supplementation. You can definitely make good gains with those approaches in the absence of HRT.

There's so much advice on this thread.

I have voted that YABU because I think I have had excellent care regarding my bone density and I think there is lots of NHS advice about Vit D supplements and women doing some strength training exercise as they mature.

Perhaps it is because I was on corticosteroids for over a year (to reduce some organ inflammation) but I get periodic Dexa scans (every 5 years) and am prescribed Calcichew (Calcium + Vit D). When my bone density slipped from osteopeania to osteoperosis, I was sent to the osteoperosis clinic who advised exercise while monitoring and then signed me off when my bone density crept back out of the danger zone. If it had not improved, I would have been prescribed other medication. There is good advice and treatment out there but you have to tune in and be proactive.

This is utter tosh and you really should demand a referral to someone competent (phrased as “second opinion”). Osteoporosis needs treating but not by someone who plainly has no clue. Maintaining a good diet and gentle weight bearing activity plans can help but are not going to reverse significant bone thinning on its own.

Bisphosphonates can be taken orally as regular medication or injected less frequently. There are many variations to work through to find the right combo. You may also be a candidate for HRT+Calcium/VitD supplements which has made a significant difference to me.

In some people bisphosponates caused bone hardening in a way which makes it advisable to avoid dental implants. This is why dentists will ask about them if you are planning significant dental work - they may want to spend more time looking at X-rays and ensuring you are a suitable candidate. An HCP who translates that into “your teeth will fall out” should be sacked.

The risks of osteoporosis in older age are greater for most people than any of the threatments. Think being in your 70s having broken your hip and being immobile for the multi year wait for a replacement. Get that second opinion.

Just out of curiosity, if your mum is 87, unless she had you incredibly late, are you sure it's going to be ages before you're menopausal? With a family history, I'd push for another DEXA sooner rather than later.

Its an interesting link thank you but honestly this bit made me laugh:

New figures from YouGov have revealed that 79% of UK adults – that’s almost 8 in 10 of us – have never checked our bone health. More worrying still, that includes three-quarters of women, who face the greatest risk

This smacks of blaming patients. There is no routine bone scanning available on the NHS and they are not that readily available even with symptoms. Private scans are not cheap. IME non specialist medics are not good on the multifactorial risk factors in women’s health - I’m struggling to think of any commenting on bone health when I presented with risk factors. Hopefully this scheme will increase education on interacting risk factors for primary healthcare providers.

It's amazing how many GPs don't know about the necessity of K2 with vitamin D

@Greenship interested to hear that you reversed it in 3 years with just 10 months meds.. Just got a score of -2.7 and am not clear on if I could reverse this early stage through diet and exercise - why did you only do 10 months? Did a DEXA scan show an improvement in that time?

I am assuming exercise was resistance and impact? What diet did you follow as I see all sorts of stuff around reducing protein to make body more alkaline and giving up coffee - was there a particular programme you did as your story is giving me hope! - and well done!

Thank you. Yeah I've already broken my hip once, that was how they found the osteopetrosis. I don't want it happening again!

I will definitely look into getting a second opinion. I mean I don't even think I had a first opinion. I did the scan then this bloke waffles on about teeth falling out and leaves my bedside, then it was never mentioned again!

Some of us weren't offered it - no symptoms = no HRT.

I was diagnosed after a fracture. I have a daily prescription for calcium and vitamin D plus an aclasta drip once a year. Jaw/teeth problems is a side effect of aclasta but it's extremely rare.

I have osteoporosis, diagnosed age 62 after a dexa scan.
Yes the drugs have potentially nasty side effects but all powerful drugs do and not everyone gets them. They also work.

There needs to be awareness at a very early age. Teens and 20s are when bones are built and getting the right nutrition and exercise then is vital. It's not unhelpful to start in your 50s but it's far too late to make much difference.
Young people being underweight, lack of exercise and poor diet are huge risk factors. Vegan diet high risk unless a great deal of care is taken.

The Royal Osteoporosis Society are an excellent source of advice. The main thing I learned apart from the obvious need for calcium and vitamin d is that protein is as important. I have to make a huge effort to eat more protein than I would choose to and I'm a meat eater.

Just to add that it's a strange disease because you don't necessarily have any symptoms unless you fall and break something. It's hard to take a treatment for something when you're asymptomatic. You also have to be more risk averse. I don't walk on ice.