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Diagnostic Testing for Osteoporosis

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).

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If you visit the NOS website, there is an explanation of the level of risk you might be at. It is common knowledge that the risk increases with close relatives who have Osteoporosis. RA also raises your risk. My mum and gran both had it, and I also have RA so I knew my risk was high. Breast Cancer treatment and high doses of steroids for various diseases added to the mix. nos.org.uk/about-osteoporosis/ will answer all your questions. xx

Just read the article, I have some of those tests mentioned. Are you treated by your GP, or a rheumatologist?

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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.)

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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. ;)

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Hi Kaarina,

I am 51 and was diagnosed with osteoporosis 10 years ago. I have been on HRT for over a year now and am due to have my next DEXA scan at the end of June. I take all the obvious supplements, eat healthily and exercise. However I am concerned that you mention thyroxine, I have been taking it for one year now for an underactive thyroid. Are you saying that thyroxine is bad for osteoporosis? I have not heard that before and it is prescribed by my endocrinologist who is obviously well aware of my osteoporosis. I will be seeing him after my Dexa and would be grateful for any information as I will mention it to him. Many thanks.

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Hi Katy

This link is taken from the NOS website.: nos.org.uk/search-results/?...

With all medications one has to weigh up the pros and cons which is what your endocrinologist has done as presumably you have to take it for whatever reason.

I have to take thyroxine daily as too much of my thyroid gland was taken away when it was operated on to remove the nodular goitre. This is not an unusual occurrence.

I am sure you have regular blood tests to check your levels. With age the amount of thyroxine I take has been lessened although it was the same for years, even through pregnancy. I now take 125 mcg daily whereas my friend who started to take thyroxine later in life takes more than me.

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Thank you Kaarina. I will have a read shortly.

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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.

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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.

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"but did claim that men tend to automatically have the tests for underlying causes but that women don't."

I think men are treated better than women.

I have just come in from an eye appointment assessment to have my second cataract done having waited three times the length my husband has!

I'm fuming and upset.

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That's a huge difference in time - and particularly with the impact on your quality of life.

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Poemsgalore, I believe the Susan Brown protocol is very simple - nutrition, including a judicious use of supplements, and appropriate exercise. There is no need to purchase any of her products to benefit from her expertise. In my province in Canada none of my medication is covered by the government medicare. The coverage provided by my husband's plan does not include anything other than prescription medications, never nutritional supplements like vitamins, etc. This is by way of saying that the natural methods recommended by Brown are NOT expensive nor beyond the reach of most people whether covered by a plan or not.

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I share your frustration. Yes osteoporosis is clear on family tree going back several generations on one line. But I share gluten intolerance/celiac with siblings also as well as osteoporosis. I was also on steroids for asthma for 9 years at one stage. Celiac only picked up late in life but I wonder if it is part of the puzzle and whether going gluten free at this stage can help bones? I quizzed consultants when first diagnosed but got no answers.

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AOB117 As you're diagnosed with Coeliac's Disease I'd imagine that being gluten-free would help you overall, not least with your ability to absorb nutrients from your food? And that would be helpful for your bones.

I'm bemused at the substantial variation in what's available via the NHS as it seems to be at the whim of individual GPs, practices, CCGs etc. with little that's predictable.

When I read Susan Brown's recommendations it brought me up short and made me wonder if the NHS had considered this and decided that it was a potential waste of money for little useful information or if some people actually had this level of investigation (altho', none that I know).

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nos.org.uk/information/oste...

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Ityfial,

Did they give you a reason for refusing to scan you? I would've thought you're eligible because your siblings have the condition and you've had fractures. 🤔

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Age - in my area it seems that you need to be 75+ with a recent fracture, other risk indicators etc. And, I'm far from that age (as are both my siblings).

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Ityfial,

But you've got a thyroid issue, right? And you've had a fracture? And your two siblings have it?

That's three things that look like associated risk factors.

I think they've fobbed you off. 🤔

Any medic that generalises to that extent is a fool.

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Ityfial,

I came across a female (friend's girlfriend) who at around 20 yrs of age was scanned and found to have osteopenia/osteoporosis - I can't recall which. She had aches and pains and very low Vit D. So the GP sent her for a dexa bone scan.

Osteo doesn't only happen to senior citizens. 🖖🏻

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I have very low vitamin D to the point where it looks like a genetic variation. And agreed, it can happen to younger people.

Pretty much the first question out of a GP in my area when they find something is, "Do you have health insurance?". I'm constantly surprised when I read about the level of testing/imaging etc. available in some parts of the UK. It's quite the eye-opener.

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I've heard that some/many Nhs GP practices are, and will be, closing down. Mainstream Media have kept the general public in the dark about what is truly going on and have colluded in misinforming us. And things will be gettinh worse, according to what I was told by the Outpatients manager at a major hospital who is witnessing the cuts, etc.

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I wonder if tv programs set in post war Britain, like Call the Midwife, will remind people how public health should be run, with personalized care, district nurses, and so forth? You should be screaming to save your health care system, improve it, not gut it. One only has to look at conditions in the US to see what happens when health care is not universally available. Medicare isn't perfect, but it's way better than the alternative.

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Just be aware that if you are given a dexa scan and are diagnosed with osteoporosis your doctor will automatically prescribe bisphosphonates. Research the side effects and have a good think about Susan Brown's natural approach. I refused to take drugs ten years ago after a bad ankle break. Luckily, so far, the two doctors I attended did not push them on me. No breaks so far but I exercise loads with a fairly healthy diet which I hope to improve more on Susan Brown's recommendations.

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