W.H.O. Osteoporosis treatment levels graph?

[strawclutching]

Hi folks, I'm querying something my GP told me during a telephone appointment about my T scores. I was diagnosed with osteoporosis in 2009 and treated with Strontium Ranelate until they were taken away from me in 2016 because of heart attack risks, length of time I'd been on them. But nothing was prescribed instead, so I took OTC calcium and vitamin D myself. Subsequent DEXA scans were 2016 spine : minus 2.5 and hip minus 1.7 followed by 2019 spine minus 2.5 and hip minus 1.6 followed by 2022 spine minus 3.9 and hip minus 3.1 (that last one after 17 months on Prednisolone). I asked the GP why the Strontium Ranelate was not replaced with anything in 2016 as I still had osteoporosis and after hesitating he said it was because my scores in both 2016 and 2019 came below the treatment levels recommended by the World Health Organisation. I said I wasn't aware of these WHO recommendations and he said there was a graph, and my levels came below the treatment lines. I've searched the internet and cannot find any such graph and anyway, I thought the NHS in the UK operated within guidelines of NICE, not the WHO. Has anyone heard of this before?

On a more positive note, I've published another book! This time it's an illustrated book of humour based rhymes for ages 8 and upwards called Cheese on wheels. Thank you to everyone who supported my last release of women's crime fiction novel The Purple Dolphin. I've got 5 reviews so far but could do with a few more. If anyone would like a free copy of either book, please message me with an email address and I'll send you one in PDF format.

[strawclutching]

Forgot to give the Amazon book link : amazon.co.uk/Cheese-wheels-...

[DorsetLady PMRGCAuk volunteer]

This is info from NICE - cks.nice.org.uk/topics/oste...

This includes WHO classification -

nhs.uk/conditions/dexa-scan/

[strawclutching in reply to DorsetLady]

Seems I tick all the boxes for treatment. Insulin dependent diabetes 40 years plus, age, previous fracture, family history, etc. Thanks Dorset Lady.

[PMRpro Ambassador]

The hip -1.6 t-score is where they usually say treatment beyond calcium/vit D is not required. I don't know if that is what's in the WHO report - at a mere 205 pages I shan't be reading it any time soon

But I think he is skating on thin ice as you obviously had a history and you had the pred risk factor. The WHO report is also what you could call dated - it was published in 2003 before some of the current medications were in wide use

apps.who.int/iris/handle/10...

Being of a very suspicious and cynical nature I'd suspect that might have been a CMA reply from someone who thought the patient was too daft to query it ...

[strawclutching in reply to PMRpro]

I'm suspecting that too. This was the same GP who sent me home when I presented with classic GCA, saying I most probably had a virus and to take paracetamol. He is rather arrogant, know-it-all and I think he senses I don't trust him. I've asked the practice manager if she can point me in the direction of these so-called WHO osteoporosis treatment guidelines. I don't like being fobbed off with untruths. I've had a scan through that document, and the graphs in there have nothing related to 'treatment levels' and you're right it would take an age to read through it. Thanks for your thoughts.

[PMRpro Ambassador in reply to strawclutching]

No mention of WHO - but this is NHS guidelines and alporithms - see p5 and following

enhertsccg.nhs.uk/sites/def...

Then there is this

northoftyneapc.nhs.uk/wp-co...

which says very clearly that

"This guideline is not exhaustive and does not override the individual responsibility of

health professionals to make decisions appropriate to the circumstances of the

individual patient, in consultation with the patient and/or guardian or carer."

I would be VERY sceptical that there are WHO guidelines used in the UK - NICE and the NHS will have drawn up their own.

Wonder if he ever thinks of the fact that his arrogant exaggeration of his abilities is likely to mess up any relationship with a patient if he is rumbled? Doesn't wash with me either - I did the same physiology course as the medics at St As.

[strawclutching]

The self importance factor and the need to maintain it over rides the fear of being rumbled I believe. A bit like Boris Johnson when he kept insisting no rules were broken.

[HeronNS in reply to strawclutching]

Are you able to change physicians? When a young woman I encountered a doctor who said, after hearing (by phone from my husband) that I was fainting and dizzy and had a buzzing in my ears all the time, "there's a lot of that going around". A few days later I was rushed to hospital and given four units of blood because I was literally dying of blood loss, a stomach bleed. Your experience of having GCA dismissed is so similar, it's scary, and it sounds like he's never learned anything. (That then relatively young doctor has only just retired; thank goodness I never had to deal with him again.)

[strawclutching in reply to HeronNS]

There are a number of GP's at our practice, and the receptionists don't tell you who you're going to get, but I think I'll have to insist I don't want HIM in particular. Mind you, the practice is not great generally. Prescriptions are delayed, phone orders sometimes are not signed off for 10 days. Your story is dreadful, and not the first I've heard. I've complained before about this GP in writing, waited 6 months for an inadequate response. They're considered God like and cannot be questioned.

[HeronNS in reply to strawclutching]

Must be so frustrating. Generally speaking I've had good luck with GPs otherwise, although the young woman we had for a few months after my doctor retired completely missed the PMR diagnosis, but she moved away. I don't know what one can do in a situation like yours. Grit your teeth and bear it I suppose. At least you are a well-informed patient!

(Your BJ comment mirrors our feelings about our relatively new premier who seems to have silenced our chief medical officer and allowed us to now have one of the highest covid infection rates in North America, after being, under the previous regime, the New Zealand of NA. 🙄

At least, also thanks to previous regime, we have a very high vaccination rate.)

[strawclutching in reply to HeronNS]

Maybe there should be elections every year to get these bad apples booted out before they do more damage. As for being well-informed, I suppose it's a necessary these days when standards have reached an all time low.

[DorsetLady PMRGCAuk volunteer in reply to strawclutching]

If you had elections every year no forward planning would ever get done (yes it does actually). Every tenure would concentrate on knee jerk reactions for immediate issues only just to please the electorate. Plus the upheaval (not to mention costs) would be bonkers..it’s bad enough every 5years.

[strawclutching in reply to DorsetLady]

Of course I get that. It was just a light-hearted and hypothetical suggestion to get rid of these leaders who care more about themselves than the people they are meant to serve.

[DorsetLady PMRGCAuk volunteer in reply to strawclutching]

Yes I did realise that -but nothing to say the next one, or the one after that will be any better -unfortunately!

[strawclutching in reply to DorsetLady]

Fingers crossed for better. 😐

[HeronNS in reply to strawclutching]

Well it works both ways. Good apples fall from the tree too. I think the election cycle is a problem though as so much is based on promises about what they'll do. Latest crew said they would "fix health care". Within a few months that language has become decidedly less optimistic. I firmly believe that in a multi-party system first past the post doesn't usually work well. It's best when the result gives one the equivalent of what would happen with some form of proportional representation. I hate it when a gov gets to do pretty much anything it wants with a false majority of only about 32% of the voters. (E.g. two thirds vote for more progressive, socially responsible - yes we'll work to mitigate climate crisis, etc - parties, but business/money rules types "win". No bias here :D)

[strawclutching]

I totally agree, and I've heard this discussed before following elections but those with the power to change the system seem happy to let it continue.