Diagnostic Testing for Osteoporosis: I was taken...

I was taken aback to read the extensive basic screening work-up that Susan Brown recommends on her Better Bones site: betterbones.com/testing/wha...

"One of the basic principles of the Better Bones Program® is that all osteoporosis, all excessive bone loss, or all real increased risk of low-trauma fracture has a cause. To better understand any undetected causes of bone loss, it is important to obtain a medical work-up — that is, further tests that can help find the causes of osteoporosis."

Has anybody had a work-up that resembles this in any way, shape, or form? Or has there been little evidence to support the need for this level of work-up? I've no idea how many people with OP or osteopenia have an underlying cause that can be identified and rectified, thus forestalling expensive fractures, loss of independence etc.

In my case, I've 2 siblings with early-onset osteoporosis, and I've recently sustained a fracture. Nonetheless, I can not obtain NHS DXA scanning etc. Neither of my siblings has experienced anything like the work-up Susan Brown PhD suggests - they were placed on OP medication after their fractures (fx imaging followed by limited DXA scanning confirmed their diagnosis).

22 Replies

oldest • newest

ITYFIALMCTT

in reply to poemsgalore1

2 years ago

It's more that I'm genuinely interested in how many people have had an extensive work-up, as outlined by Susan Brown, to establish why their OP developed (particularly if a relatively young age).

My siblings are treated by their GPs. Altho' I've recently had an ankle fracture and have 2 siblings diagnosed with early osteoporosis I haven't been screened for osteoporosis. (I also have some symptoms of one of the inflammatory arthritis conditions but I'm seronegative and the local CCG doesn't permit referrals to rheumatology without some positive blood markers.)

Neither of my siblings has had extensive screening to establish why they've developed OP. (Both of our parents died relatively young so we don't have a clear perspective on our family history.)

Kaarina

in reply to ITYFIALMCTT

In answer to your question it is NO. I have had a few blood tests but nothing much. I have taken thyroxine for yonks, was underweight for a time and had no periods or very irregular for a time. My late mother had OP. I think I know why I developed OP.

Certain drugs can cause OP as poemsgalore mentions as can omeprazole taken over a length of time. All drugs have side effects of some kind or other unfortunately and some can cause OP. I have only learned this since being diagnosed and finding out information that drugs can play a big part in one developing OP. Miserable isn't it? I was 16 years old when I had to start to take thyroxine as a result of the removal of a nodular goitre. No one mentioned it then all those years ago. No one probably knew. I had to take it anyway.

poemsgalore1

I believe Susan Brown is in the US. So any treatment she suggests is probably paid for, and as we know, the NHS is grossly underfunded and have to follow guidance from NICE.

Your comment about inflammatory arthritis puzzled me. I was diagnosed with seronegative RA 30 years ago. Although not screened at that point for Osteoporosis, my consultant considered me very high risk because of RA and mother and grandmother already diagnosed. I didn't become seropositive until 2015 after which I was diagnosed with Vasculitis which requires treatment with high doses of steroids. I can't have HRT as my Breast Cancer was Oestrogen positive, so I have to take an aromatase inhibitor to keep my Oestrogen levels as low as possible to prevent the return of cancer. Extensive screening wasn't considered necessary to establish the reason why I have Osteoporosis. I already know why I have it.

You plainly have several risk factors (as well as several chronic conditions to contend with).

Thinking this through, I don't know if most people being treated for OP had high risk factors (until this happened with my siblings, I would have said that we don't), moderate or low risk factors, or if some of them have an underlying cause that is better assessed and treated otherwise than with OP medication.

One of my siblings is considering participation in an OP clinical trial. As part of that, the Better Bones group the local hospital runs (NHS rather than the Susan Brown programme, I think) went along to an excellent presentation that emphasised the several categories of OP. Sadly, a lot of the information there was very new to people which made me wonder how much information people typically receive about their diagnosis and prognosis. (That said, my sibling is far and away the youngest person there and some of the group are late 70s or 80s.)

The NHS is cash-strapped. Perhaps there isn't much to be gained from testing to see if the cause of the OP can be treated rather than defaulting to OP medication. Susan Brown is not very clear on that point but did claim that men tend to automatically have the tests for underlying causes but that women don't. Perhaps that's a US phenomenon.

It would need a study of people being screened for OP and those who already have it to establish whether the testing is useful. Run the tests and see how many have a potential underlying disorder that can be addressed. First round OP medication is cheap but it might be a sticking plaster for those who need something else.