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!

Ah right - if you're using the podcast / screencast to show you the exercises that makes sense.

Are there YouTube routines specifically for this kind of exercise? I can see myself spending ages exercising in a way that doesn't actually help.

Margaret Martin does specific exercises,

Thank you, @BruachAbhann

Not meaning to derail, I am a man aged 80, I have osteoporosis in spine and one hip.
Prescription: Alendronic acid, weekly tablet. Multi vitamin tabs, 2 per day.
I asked about scan for update. No what is the point you walked into here so not too serious is it?
I would like to know more details because I like knowing details and about results.

@Newjokename That sounds likely because of your age. Did you get the details of the original dexa scan? They usually mark spine and neck of femur
Mine was T score in spine -3.9 and femoral neck -2.9 when I was scanned in 2021
After 3 years on alendronic acid they repeated it and it was -3.6 spine and -1.6 femor.
So the alendronic acid had made a difference. I'm now on infusion of zolendronic acid once a year. The bisphosphonates make you require more calcium than normal so I go out of my way to increase dietary calcium as well as taking supplements.

I was told to increase my protein intake to at least 0.8 g per kilo of body weight.
It's more than I would usually eat (eg a chicken breast is about 30g); keep alcohol under 14 units a week and take the calcium 4 hours after alendronic acid. I was also told to do impact exercise and muscle strengthening. I have a slipped disc and rheumatoid arthritis so this isn't always possible.

@Sofasu Thanks for the comments, I am sorry that you have the rheumatoid arthritis. The conclusion was that I had damaged my spine and back several times falling off motorbikes when I was younger.
I had an X-ray of my spine the year before Covid. They identified the Osteoporosis both sides of a cracked vertebrae and a hip. The other hip and somewhere else showed signs of a predisposition to osteoporosis that would probably develop later. I think it has now, at times it is very uncomfortable luckily not painful like some folks get. I eat all meats and exceed the recommended units for booze. At 80. . . . . .

It seemed strange having an X-ray of my spine whilst lying on my back.

Bluefin Fitness, any one that vibrates up and down. I’ve got the ultra slim plus £145. It’s really nice.

I started looking at osteoporosis and its prevention after my mother had a freak issue at the dentist a few years back. A decade previously, she had been on fosamax (alendronic acid) for less than a year (8 months) .
Twelve years later, she needed a tooth extraction, the dentist was struggling, he even put a foot on the chair to pull harder, the tooth came out attached to the bone. The dentist had shattered my mother’s jaw.
The alendronic acid acts like cement on the bone surface including the bone surrounding teeth. If you have taken alendronic acid, even years and years ago, you must tell your dentist and he should know.

The impact this class of medication has on teeth go well beyond necrosis, so be mindful. I believe my mother was an extreme case, but the pain she was in for months shocked me into action. For her and for me.

Once you start really looking into it, as in getting a deep understanding of its mechanisms and stages is so complex. Way more than vitamin D.
We now know that the gut microbiome is a critical factor in the development of osteoporosis, in particular the Firmicute to bacteroidetes ratio. So yes to prunes as someone as said above, but it is way more than that.

In an ideal world, we would all be given a baseline DEXA, then targeted advice by an endocrinologist, and followups. Well, we can dream, but there isn’t the money, nor the resources, enough machines or enough staff. So the onus is on us. We can have access to good sources and no, MN or FB is not a good source. The protein shake you take to meet your internet protein target will have sweeteners and a ton of emulsifiers/additives which are more likely to damage your bone metabolism than help it. Open a can of unsweetened beans if you want proteins that help your bones. It is not just weight lifting but targeted osteoporosis preventing exercises studied in trials. Your biceps curl will do nothing to your spine or hip. I have posted the LIFTMOR (Lifting Intervention For Training Muscle and Osteoporosis Rehabilitation ) protocol earlier in the thread.

On alendronate on the NHS you should be rescanned at 5 years and the dose stopped or reduced in frequency. My understands is it almost never fails to work, hence the second scan is only to see whether to stop it.

What a stupid thing to say, you walked in. If you fall and it fractures you may never walk again!

The impact this class of medication has on teeth go well beyond necrosis, so be mindful. I believe my mother was an extreme case, but the pain she was in for months shocked me into action. For her and for me.

Today I got told for the second drug this year that I'm an extreme case. I feel like yelling, well yes, extreme cases have been recorded so somebody has to be one! Saw the doc this morning about stopping taking alendronate because it made my teeth hurt so much I couldn't eat. I've only taken it for 12 weeks so hopefully I've got away with anything worse!

He offered me an infusion .... after telling me that it had affected his mother's liver (and that she also had tooth problem with alendronate). Err, no thanks I'll stick with my supplements and D3.

I am sorry @Imdunfer . You mention vitamin D, make sure to include vitamin K2 as well.

No, not on HRT. I can’t take it.
Also, re K2, there are many different variants. You need mark 4 or 7 for best vitamin D absorption.

Why don't the GPs say that!? They only mentioned vitamin D and I was left to my own devices to work out that it has to be D3. I think my supplement is calcium, magnesium, D3 and K2 but I'll go and check.

Thanks!

And you can’t take magnesium and calcium together. They must be taken 8 hours apart. They compete for absorption in the gut

My mum has just been diagnosed at 81. She has to take an ‘acid’ pill once per week (whilst standing up…?!?!?) and it makes her horrendously ill (normal apparently) and she’ll have to take it for the rest of her life…. No idea what it’s doing but

Because according to the majority of responses on this thread, we are supposed to know more than the medical practitioners because we have the internet now 🙄 . And if you don't know or understand the ever changing landscape of whateverthefuck, well then that's on you, apparently.

But nobody eats a diet where they separate magnesium rich foods from calcium rich foods. I'm happy with what a reputable company have sold me, I heave a good diet anyway, it's only a topup.

She has to stand up because it's really acidic and you can't risk it coming back up your food pipe or it may ulcerate..

It stops osteoclasts forming. They are things that take away bone, so stopping them forming causes bone to build up.

It's not normal to feel "horrendously" ill with it, she needs to speak to a different GP.

Do vibration plates have any other benefits - toning etc?

It's alendronic acid, the standard treatment for osteoporosis. It does work to reduce bone loss.
It can irritate the digestive tract like ibuprofen, hence the caution when talking it.
However it should not make her ill, that is not normal and she should stop taking it and go back to the doctor.

Totally agree OP! Having gone down the bone density road because of a full hysterectomy 13 years ago due to endometriosis, I still find it shocking we don’t offer DEXA scans as part of women’s health checks like we do with mammograms, especially if chronic illness/genetic factors are at play too. We leave it far too late as a country to make it a proactive, rather than reactive issue & especially with longer life expectancy. I had to research loads myself before my hysterectomy & also learnt from that what probably lay ahead in the future for my bones. I impart all of that to my daughters now too as the earlier they start things, the better. Having tracked my bone density over the 13 years, HRT (low dose) definitely helped me for 5 years but then I had to stop it & my bone density started falling back down again, as predicted. I now have osteopenia in my femur, but I think lifting weights, resistance work & dietary intake have helped it not progress to osteoarthritis yet at 60 - hopefully! A GP prescribed calcium tablet with D3 personally wrecked my kidney filtration, as calcium can, so I had to come off that to get my kidneys back to somewhere normal. I have been taking Vitamin D for 1 year (which has definitely helped), & have 6 monthly renal & bone blood tests done to monitor things/impact. As well as the weights/resistance work, I have now incorporated jumps off a box (carefully as have a dodgy knee!), skipping, hopping & a weighted vest into my exercise routine & continue with Pilates for core strength & balance & to try to prevent falls. I also look at advice online from both women orthopaedic surgeons & physiotherapists as more knowledge/evidence comes out. Someone said upthread we need better medically informed specialist information given out & I agree - you can be as proactive as anything researching things, but will it make a difference to you personally & how much needs to be done to increase it? As bone loss happens slowly over time, how do you know what is really working over that period of time too if you are introducing different forms of exercises? I do think we need much more transparency around side effects on bones from things like steroids, fizzy drinks, calcium supplementation & even taking some forms of contraception back-to-back & issues of suppressing oestrogen in younger women because of heavy periods & things like endometriosis, so we can try & make more informed decisions around what we are taking & the possible long-term affects on our bone density. At long last the menopause is being discussed more openly, but bone density also needs to be a bigger part of those discussions in tandem too both for older & younger women & our daughters too.

Has anyone also had a REMS scan alongside their DEXA scan as would be interested to know as newish technology?

@Pavementworrier thank you so much for starting this thread - I have learned so much from it. Mumsnet at its best.

I was diagnosed with breast cancer in June and had treatment over the summer. I have been put on hormone- suppressing tablets which can contribute to osteoporosis as a side effect, so I was fast-tracked for a DEXA scan to give a baseline status of my bones. I got the results within in a week - the letter simply said that the scan showed signs of osteoporosis already - no further detail about where or how bad it is.

I have been told that it will be 5-6 months before I see anyone from the specialist osteoporosis team to get blood tests and potentially have treatment. Seems like I am back in the NHS slow lane after the very speedy cancer diagnosis and treatment. Like everyone else, I will try to take care of myself with adjustments to diet, exercise and supplements and the info on this thread will definitely help.

YANBU - osteoporosis care definitely is a Cinderella service in the NHS. I can't help but contrast the bright shiny buildings, speedy service and charity-supported staff and facilities I encountered during cancer treatment with the dilapidated and neglected hut I attended for the DEXA scan - but the radiography staff were lovely and doing their best.

I was advised to eat dairy inclduing yoghurt for the calcium and protein.

@sodabreadjam
YANBU - osteoporosis care definitely is a Cinderella service in the NHS. I can't help but contrast the bright shiny buildings, speedy service and charity-supported staff and facilities I encountered during cancer treatment with the dilapidated and neglected hut I attended for the DEXA scan - but the radiography staff were lovely and doing their best.

Interesting you should say that because my experience of breast cancer treatment was the polar opposite. I'm guessing you were treated at a major teaching hospital? My hospital is the poor relation and demonstrates the NHS postcode lottery at it's finest. My Dexa scan was at a shabby little outpost and I was given no feedback until I saw my rheumatologist for something else.
I recommend a call to the Royal Osteoporosis helpline. They are excellent and may be able to give you advice pending your appointment