DEXA results and nerves

[Chaucer89]

Hello folks,

I’m a 34 year old female with a complex medical history dating back pretty much my whole life. I recently had a DEXA scan due to current very low body weight on the advice of my GP. Ive been told that the fact I have Kyphoscoliosis & scoliosis (76 degrees fixed to 26 degrees - operated on with 2 metal rods), that I have hypothyroidism and take levothyroxine, and the fact I also take PPIs and currently have a very low body weight (43kg, 16 BMI) that it created a sort of perfect storm. My calcium and vit d have been all within normal ranges for years so despite my weight issue I seem to be getting enough nutrients for average adult my age. I spend most of spring/summer days outdoors as much as I can.

My T scores was Femur -1.5, Spine -2.5

My Z scores was Femur -1.4, Spine -2.5

BMD Spine 0.897, Femur 0.818

As I have fixed scoliosis they were only able to use my L3 and L4 for the spinal scan. I’m curious if the rest of my spine would likely have a similar result the entire way up?

Is it usual to have a difference between femur and spine?

As my spine is -2.5 and right on the cusp there seems to be conflicting advice on whether this is osteopenia or falls into osteoporosis. Sites I’ve read seem to say -2.5 and above is osteoporosis but then they say -2.5 also falls under osteopenia, is there a general consensus on here from those who’ve been diagnosed?

Lastly I’m wondering if anyone has or is experiencing nerve issues with osteopenia/osteoporosis. Sciatica like issues, I’ve been blaming it more on my scoliosis as I usually do for most back/leg pain issues I get but am curious if this now could also be having an effect with my spine as it is. Not sure whether to bring it up, I’m seeing my gp again to follow up in feb. I’ve noticed increase in lower pain in last few years and worsening nerve and circulatory issues in hip and leg but as I say always put it down to aging with scoliosis so just made me wonder if can be connected if anyone has similar experiences.

TIA

Abi

[Fruitandnutcase]

I always thought over 2.5 was classed as osteoporosis and as far as I was aware they only check the lower spine. I was led to believe that there are many organs in front of your spine to be able to get a good reading.

Back in January 2020 I broke my wrist and discovered I had osteoporosis. When I was trying to decide whether or not to take bisphosphonates a physio friend told me that if my lower spine was what it was then my upper spine would be the same or more likely worse. As it was I started the alendronic acid then stopped it after four months.

Nerve pain - I’m very prone to that. Among other things I have spinal stenosis. I had an MRI a few years ago which showed that my spine is a bit of a mess, lots of peculiar things wrong, most of them I think from way back - anyway, over the years it had taken a pounding and I am now 75 and have osteoporisis.

I fell very heavily on my tailbone back in 1985 which eventually led to sciatica. I had an MRI followed by a couple of steroid epidurals. My consultant said he didn’t want to operate because at that point I didn’t have back pain (just agonising sciatica ouch!) and I could end up with back pain if he operated. So he organised a steroid epidural which worked right away, I later had a second injection which didn’t work straight away but which obviously did work as I had no more problems until summer 2021 when I flew through the air backwards onto very hard ground. Agony. Had another couple of MRIs - lumbar and pelvic. Turned out I had fractured my sacrum. Eventually that improved with rest, gentle exercise and painkillers.

Last year I started to get a lot of nerve pain. In my spine and legs - no sciatica though. If I looked up I used to get shooting pains right down to my ankles, similar when I looked down, pain would shoot up to my neck, it was like an electric shock that shot down the length of my spine, sudden and quite horrible.

Eventually an elderly friend who has had life long scoliosis and who was having a bad time went privately to see a physiotherapist who worked for the pain clinic in our local hospital and I thought why the heck am I putting up with this pain and booked to see her too.

I had some acupuncture which didn’t make much difference then she did a bit of manipulating which did help and she gave me two very simple exercises to do at home although I can do them anywhere and no one would know I’m doing them. The exercises made an amazing difference. Also if I do get occasional twinges which I do, I can do the exercises and stop them in their tracks.

I would think it might be worth asking to be referred to a spinal / nerve specialist for specialist physio. Nerve pain is really horrible to put up with. I can hardly believe that a couple of simple exercises are keeping mine at bay.

Apologies for the extremely long post and good luck with it all.

[Chaucer89 in reply to Fruitandnutcase]

You have been through it! I always put my hip pain down to my scoliosis as started a year or two after the surgery when 15 and mostly because I’m still very uneven so it affects hips which affect knees which..and so on. Also get frequent trapped nerves in back so I’m definitely familiar with the pain! The hip pain can be very sudden like a dislocation almost and then shoots pain down my leg so sound very familiar to yours. Can’t put weight on etc. Does ease up if I sort of swing my leg around a bit. Very unpleasant. Nearly needed rescuing on my walk yesterday as was doing it very second step. I’ve seen a few physios over the years for it but never anything in depth so I will certainly bring that up I think as it’s definitely worsening as get older and as you say, why live in constant pain if you don’t have to. Especially as I’m only mid 30s! Long way to go yet potentially.

The medication side effects make me very wary of going on any of that unless very much need to, besides the fact I’m very intolerant to most medications so no doubt I wouldn’t be able to do them anyway! Hopefully I can head this off enough now I know it’s happening before we get to that stage.

I think you’re right in that I think if it was even just -2.6 it would be classed as osteoporosis so I might just be right on the cusp! Interesting that the rest of the spine would likely be the same or worse, I always assumed my spine wouldn’t last out my scoliosis for long anyway without issue, it is held “straight” by force after all and it’s been near 20 years already since fixed. I shall have to see if I can get GP to give me a referral to a specialist to have a proper talk about it, consider all factors and go from there I suppose.

Thank you very much for responding, it’s always helpful to hear from fellow patients on these things 🙂

[Fruitandnutcase in reply to Chaucer89]

The lady in my Pilates class who went to the pain physio was 80 at New Year and is still going strong and has had four daughters. She had a spell off recently when she was in pain then came back when our physio got her fixed up, our teacher is a physio so she’s in very safe hands, she had lifts for a couple of weeks then last Monday we all got a text to say she would be driving herself 🤗

I think if you feel as if your hip is dislocating and causing pain then it would be an idea to mention it to your doctor - especially as pain is involved! I think you can get so used to discomfort that you just come to accept it (or I do) and unless your leg actually falls off then you just keep going.

Good luck 😊

[Met00]

T-scores give an estimate of bone density compared to an average 30 year old, while z-scores compare with someone your own age, which is why your t-scores and z-scores are almost identical. A t-score of -2.5 or lower is considered osteoporosis, but with your hip score being so much better, I would certainly question the accuracy of your spine score, given that they've only been able to base it on 2 vertebrae instead of 4. Some experts believe that there shouldn't be more than one standard deviation (t-scores and z-scores are the number of standard deviations from zero) between scores at different sites, in which case you're right to question the difference between spine and hip. For a second opinion, if you're in the UK and can afford it, you might find it helpful to pay for a private REMS scan (uses ultrasound instead of x-ray), which is less open to error due to being more fully automated. You can get them from osteoscanuk.com (done by an orthopaedic consultant based in Northants, who also holds clinics around the country), or with profortis.co.uk (done by a sports therapist based in Amersham). As well as measuring bone density, REMS gives an estimate of bone strength, which ultimately is far more important than density!

As far as your absorption of nutrients is concerned, I wouldn't rely on Vitamin D and calcium blood levels for information about this. Apart from supplements, Vitamin D is made primarily by the sun's action on the skin, so it's possible to have good Vitamin D (if you get enough sun exposure and your body is efficient at making it) despite low intake of nutrients. Calcium blood levels are usually normal, even if your intake is low, because if everything is working properly your body prioritises keeping the blood level within a narrow range, meaning your bones lose out if intake is inadequate.

Osteoporosis (bone thinning) itself doesn't cause pain or nerve issues, apart from if you've fractured. I would therefore ask your GP to investigate what's causing your pain and other issues, including ruling out any possible fractures.

[Chaucer89 in reply to Met00]

Thank you for those links, had a look and they seem to be opening one reasonably close to me soon which usually never happens around here so hopefully next year could look into it if still unsure. Would be interesting to get more detail on what I’m are looking at. I have been reading studies today and found most seem to think that a difference of osteopenia in hip and osteoporosis in spine for example is only classed as a minor discordance rather than major (osteoporosis in hip and normal in spine for instance) so I think it’s reasonably common but it’s interesting, I wonder if my scoliosis is a main reason for the gap. I will certainly ask if I get a referral to consultant.

That’s a very good point about the calcium and vit d levels, especially as I do have numerous other conditions.. I assume I’m definitely going to be going on supplements soon enough once I’ve spoken to GP so something to consider.

Thank you, lots to think about and discuss with doc next month. I appreciate the reply 🙂