Dexa Scan questions and answers from the NOC

[loobilou]

I posted recently that I had had a second dexa scan a year after the first one (paid for privately at the same clinic). I was unsure why the results had improved with the exception of a small increase in my femoral neck. I had some questions to ask the NOS and am posting them here -

"Your results show a very slight change in the neck t-score (-3 to -3.1) and this change is very small. The change of -0.1 may reflect that you are a year older by the time the second scan was taken. We lose bone density very gradually over time, little by little. In addition as with any measuring device (repeat blood pressure monitoring being a good example) there is a possibility of precision error in the measurements because it’s extremely difficult to achieve identical positioning of the bones on scans being done the same day let alone a year or years apart. Technicians are trained to replicate positioning and DXA machines are regularly calibrated. There isn't a set national standard or the frequency of bone density scans. Scanning tends to vary greatly across the UK depending on the resources available, and the referrals made. Not all people will need to have repeat scans for the purpose of monitoring their osteoporosis, especially if they are settled on a drug treatment that suits them and they are stable and not having any fractures (broken bones)"

I then had a question about the difference in the results from QFracture and Frax (I hadn't had that point used Garvan) and so I asked them and here is their answer:

"QFracture will give a different result as it seperates out the type of fragility fracture a person has had and adds in fall risk etc. As you can see below from a quick try with your information (but I don’t know about your fracture) the results look much more benign and friendly and could indicate treatment based on different risk factors but they aren’t likely to be so accurate as when tailored to the DXA scan femoral neck t score reading. It would be hoped that both tools would indicate a higher fracture risk. However having had an osteoporotic (fragility fracture), either type of assessment tool is likely to suggest an increased fracture risk and that taking an osteoporosis medication is beneficial as it might reduce that risk by up to a half (average of 50%)."

I then followed up with further details of the 3 falls I have had in the past 18 months - The first happened when I was jogging on the promenade by the beach. I slipped on shingle that had been swept onto the ground. I broke my wrist and had surgery to repair it. In July I tripped on an uneven pavement and fell quite hard but didn't break anything. 6 weeks ago I tripped on another uneven pavement and had an occult fracture in my elbow (proximal radius) No treatment was required other than a foam sling and advice not to lift anything more than a cup of tea for the 6 weeks.

This is their response:

"It is common that when we're older (for women post menopausal) all of us might lose perhaps around 1 or 2% of bone density in a year and so it seems that a year after starting treatment and making lifestyle changes, your scan results are showing things are holding their own. This is encouraging, however bear in mind that it's a rapid snapshot of how effective these measures may be given more years, but all seems stable and most importantly with no new fractures which is the main aim alongside strengthening your bones."

I am attaching an image of both hip and spine scans from last year and this.

Hoping any of this might help or be of interest to anyone.

In the absence (here in the UK) of specialist advice or knowledgeable GPs, and without having to rely on Facebook forums, the NOS advice is very comprehensive, if not entirely positive in my case!

(Seems to be if we lose bone density over time as we age, then it all seems a bit hopeless and we may as well just enjoy life and cross our fingers!)

[Millie09]

Wow , thank you loobilou, now I understand why dexa scans are not done as often as we would have wanted,

My age being 56, I suppose some degree of bone degeneration is expected, but not to the point where i have daily chronic pain.

I went to my GP Friday.. was like talking to deaf ears 🙄. Even with supporting letters requesting pain clinic, he still said no and that he didn't want to go down that route ?? . So he fobbed me off with some analgesic rub , bearing in mind he had not even read my reports from my dexa scan and mri in December last year.. so I am waiting for him to get in touch.. I very doubt it myself.

Came away very disheartened and like I was some sort of hypochondriac..

[loobilou in reply to Millie09]

That does sound awful, can you see another doctor at the surgery? Or contact the wonderful NOS. Let us know how it goes x

[Millie09 in reply to loobilou]

Yes I was actually thinking of doing that , this dr obviously hasn't a clue! Yes i will contact NOS .. and thank you for a fab post.

[loobilou in reply to Millie09]

I'm delighted to be of assistance! I also told the NOS that we in the UK never get referred to a specialist and that GP's generally don't seem to know much about the topic. Here's the response!

"It's true that not all GPs will have a particular interest in osteoporosis (some will) and seeing a specialist is usually reserved for people unable to take the regularly prescribed medications or for those whose history is more complex. The charity is here though to inform and support you, so do contact us with any further questions or queries you may have."

Hope that's helpful too x

[Millie09 in reply to loobilou]

Very helpful! I am a complex case 🙄as I have chronic liver disease, 10 yrs now but still going ok apart from the lethargy and insomnia, my dr still has not got back to me so today I am calling him to find out why .. I think he's at a loss to be honest but im calling NOS today too . Thabk you loobilou, hope you are ok x

[Kaarina]

Thank you so much for starting a new thread. What an extensive, helpful reply from the helpline. It really is wonderful that we have this option to give them a call/email/write to them. We are lucky to have this superb free service.

This is one reason, although I have not used this service, why I continue to pay the yearly subscription to NOS to be a member of the society. They are a superb charity and rely on donations etc.

Tend to agree with you, loobilou, make the most of each day, help others on this forum if we can, and try not to trip and fall.

[HeronNS]

I wouldn't accept the inevitability of bones degenerating continuously to the point of being a mass of crumbs. I firmly believe if we do lots of the right things to keep ourselves healthy our bones will benefit. The key is keeping as physically active as we can, and eating healthily, with the addition of a few supplements where appropriate. I think it takes commitment, especially from people like me who are not particularly athletic, but the gains are immense.

[loobilou in reply to HeronNS]

I do agree, but I also want to enjoy my life and not be too paranoid about it. And at the same time it appears to be an inevitable part of ageing, like wrinkles, grey hair and our bodies going south... Hopefully not crumbling though!

[HeronNS in reply to loobilou]

Oh I think one can enjoy life by being active and eating well! If, for example, by taking a Vitamin K2 supplement my sensitive teeth become much less sensitive, that's no hardship to me.

[loobilou in reply to HeronNS]

Of course! I like going to the gym and building strength and getting fit, though it was way easier 30 years ago!

[Kaarina in reply to loobilou]

It is those that have been diagnosed with OP that have to work much harder exercising, trying not to fall and trip over, keeping Vitamin D levels up, taking supplements and eating well etc. None of my friends of similar age have been diagnosed with OP and they do not appear to do the amount of exercise I do. I want to enjoy my life as well and thank goodness I like exercising and walking but to fit everything in I do sometimes have to get up really early so as to be able to do other things too.

[loobilou in reply to Kaarina]

Oh I can't do early mornings! But I need to up my preventative 'stuff' !

[Kaarina in reply to loobilou]

When I have a few days of early starts and late nights in a row, generally after about three days I collapse into bed really early, hardly remembering getting into bed! Sometimes there just are not enough hours in the day or night!

[Bemoresquirrel]

Thank you for posting this, it was most helpful. There is research evidence which shows taking CBD helps to build new bone.

I’m taking Aqua Entourage from the friendly & helpfully Simply CBD, as they are cheaper than the CBD Brothers, who have what appears to be an identical product (the name is slightly different). I’ve used both companies & will happily recommend them (I’m not connected to either company).

The Aqua version is nicer to take than oil, as it can be diluted in water or added to drinks. It also contains turmeric, which has many benefits for health.

[loobilou in reply to Bemoresquirrel]

Oh thanks, that sounds interesting. I'm in the UK so will find equivalents and check them out

[Bemoresquirrel in reply to loobilou]

I’m in the U.K. too! 🙂 Simply CBD is in the Forest of Dean in Gloucestershire. The have a dog sanctuary and use CBD on the dogs. Sales of the CBD help fund the sanctuary. Please don’t hesitate to contact me, if you need to know more about CBD, I’ve been taking it for several years now.

[loobilou in reply to Bemoresquirrel]

Brian recommended Green 250 for me and osteoporosis, and liquid gold for my wayward dog! Why did you decide on aqua entourage?

[Bemoresquirrel in reply to loobilou]

I’m taking the Aqua Entourage for pain relief and have come off Oramorph and regular codeine. I will occasionally take a low dose of codeine when things are very bad. It’s a big bonus that it’s heping to build bone and along with probiotics that I also take, has brought my transformed my asthma and brought it under control.

The Entourage effect include the terpenes that are beneficial in themselves, but added together are more than the sum of the individual components. Basically, it’s much stronger, but also much more expensive!

I took a basic CBD oil for years, it wasn’t until I started compounding my problems with a stupid accident that I went to something stronger.

The Green 250 is the one with the red writing on it saying that it’s improved. It’s a good place to start, but all you need for osteoporosis. Go with Brian’s recommendation, as he is very well informed.

I’ve written a guide, that I’ve posted elsewhere, apologies to everyone else for the length!

I’m taking the Aqua Entourage for pain relief and have come off Oramorph and regular codeine. I will occasionally take a low dose of codeine when things are very bad. It’s a big bonus that it’s heping to build bone and along with probiotics that I also take, has brought my transformed my asthma and brought it under control.

The Entourage effect include the terpenes that are beneficial in themselves, but added together are more than the sum of the individual components. Basically, it’s much stronger, but also much more expensive!

I took a basic CBD oil for years, it wasn’t until I started compounding my problems with a stupid accident that I went to something stronger.

The Green 250 is the one with the red writing on it saying that it’s improved. It’s a good place to start, but all you need for osteoporosis. Go with Brian’s recommendation, as he is very well informed.

You may find this helpful:

👉I’ve been on CBD for a few years now and I’ve spent countless hours researching and learning about CBD. I find it works really well for me. There are lots of health benefits from taking CBD, which are well documented and safe, though misinformation is widespread on the internet, including Wikipedia. It is not in the interests of the big pharmaceutical companies for people to take it instead of medication!

👉 Please bare in mind, I’m not qualified in anyway!

Most of my post is from a previous post, but I’ve adapted and updated it for you.

❗️Never take CBD abroad, it’s not worth the risk.

🤔 The first thing to say is that as with anything, we all tend to react differently, so there is an element of trial and error.

⏰ CBD can take three or four weeks to start working, I was lucky and noticed a difference in a few days. Taking it to strength bones is going to be a long term commitment and you might not notice anything. The very reasonable price of the Green 250 makes this possible.

🤐 You need to hold the CBD under your tongue or against the roof of your mouth for 2 - 3 minutes, so it can be absorbed into your blood stream.

👉More is not better with CBD. There is an amount which will work best for you and any extra CBD on top of this will be just wasted. It’s trial and error to find the best dose. For bone growth

👉 If you take opioids make sure you take them at a different time of day to the CBD, as they both use the same pain receptor sites, so taking them at the same time is a waste.

Avoid taking them at the same time as other meds.

❄️ The oil can get a bit solid in winter and has to be stood in warm water to turn back into an oil.

👉I have no connection with Simply CBD, other than being a very satisfied and grateful customer.

I hope this helps.

Roseyinthegarden 🙂

[loobilou in reply to Bemoresquirrel]

Very very many thanks Bemoresquirrel that's enormously helpful! I am now on their FB page so I daresay I'll see you there too x

[Bemoresquirrel in reply to loobilou]

Glad I could help. 🙂 CBD has changed my life, as I’ve been able to come off most of my meds and start driving again. It’s lovely to be able to share information on here. Take care, Rosey x

[Bemoresquirrel in reply to loobilou]

I’ll look out for you. x 🙂

[loobilou in reply to Bemoresquirrel]

I'll have to see if I can guess who you are on there! X

[Bemoresquirrel in reply to loobilou]

I’m not a member yet, and my FB account is in a different name, but if I join I’ll say hello. x

[loobilou]

Oh great. How do you take it? Are there various options?

[Bemoresquirrel in reply to loobilou]

I posted my reply above - ops! 😀 You can also find help here facebook.com/groups/CBDuser...

[loobilou in reply to Bemoresquirrel]

Oh I didnt know about that group, I'm going to join it. I have joined the Simply CBD group though!

[Bemoresquirrel in reply to loobilou]

Excellent! Between the two, you should get plenty of help! 🙂

[Millie09 in reply to Bemoresquirrel]

Great post ! Was actually thinking of cbd , but I'm going to have to ask my hepatologist when I see her in October as I have liver problems.

Came off facebok 2 yrs ago , too many pervs lol. Great to hear how well it works for you x linda

[Bemoresquirrel in reply to Millie09]

Hi Millie, I’ve found that most doctors know very little, if anything about CBD, as they just don’t have the time or the necessity to read up on it.

My advice is to print out any relevant research summaries and references for your heptologist, so she can then look into it.

There is a fantastic free resource called Green Med Info, that you will need to Google (it has adverts, so I can’t post a link). They have been collating all the research on a wide range of health topics.

The search term CBD + liver brought up 9 pages of research references, though many won’t be relevant to you. Some refer to CBD and THC which is illegal here. CBD will contain a trace of THC, usually 0.02% as it’s accepted that it’s impossible to remove it all the THC.

Fingers crossed that you’ll be given the go ahead to take it.

Rosey x

[Millie09 in reply to Bemoresquirrel]

Thank you rosie , very kind of you to inform me .

Well i need something due to this chronic pain that my own Gp does not seem to have any idea on what he is doing.. I will Google the green med info and any other relevant posts I can find to take with me and show my hepatologist.

Fingers crossed. Take care.

Linda x

[pattisue]

Last year my doctor decided I should have a dexa scan, as my mum had osteoporosis, and I was having joint pain.

I decided to have it done privately as it was a long waiting time. I had it done and the results came back that I had it in my spine and oestopenia in my forearm. When I saw the doctor, she told me that they didn’t do my hips, but I started on calcium and vit d .

A few months later I got an appointment at the nhs hospital for the original appointment, so decided to go along and hopefully get my hips done this time.

The scan was done, went to my doctor for results, and was told I didn’t have osteoporosis after all. Only osteopenia in my hip. The private hospital had mixed me up with someone else.

I had to threaten them with going to the newspapers before they would apologise and give me a refund, so be warned people, just because you pay, doesn’t always guarantee correct results. .

[Kaarina in reply to pattisue]

Mistakes happen,both in the private sector and NHS,

It was good that you did go to the NHS DEXA too, wasn't it?

I am pleased to learn that you got a refund from the private hospital and an apology.

[loobilou in reply to pattisue]

Goodness, thats appalling! As Kaarina says, mistakes can happen in either case. My son went for a blood test for some reason at the local NHS GP surgery and was told that he might have cancer and was referred to a hospital for further investigations. turns out that the GP had forward the wrong patients details to the hospital. No idea what happened to the patient who was originally given the all clear...

[Millie09 in reply to loobilou]

Good grief!! That's awful! X