DEXA results worse, trialling HRT

[KayEmJay]

Had my first DEXA scan 2 years ago at 48 due to family history of osteoporosis. I have no other risk factors. Scan showed osteopenia in my hips (overall -1.7) and osteoporosis in spine (overall -3.4). Did not want to take alendronic acid offered by my GP. Asked for medication review with Rheumatology & they told me it was unnecessary… So had repeat DEXA in November- hips are same, spine has gotten worse… now overall -3.6… Have also lost an inch in height.

L1 -3.1, L2. -3.7, L3 -3.9, L4 -3.5

Saw my GP on Friday who still wanted to go Alendronic Acid but we talked HRT & she is willing to let me trial it. Interested to hear other peoples experiences… Feeling down about worsening scores & losing height but people are generally very unsympathetic!

[Met00]

HRT is a recognised treatment for osteoporosis, but many doctors will only prescribe it for menopausal symptoms. I've come across people who have found it has improved their bone health. I've read, though, that your hormone levels need to be raised sufficiently for it to be effective for your bones, so it would be worthwhile joining an HRT group to find out more. Or there's lots of information on the Facebook group Osteoporosis UK - friendly support and natural options (UK based, but open to members from around the world).

That sounds a huge difference between your spine and hip t-scores! There are experts who say that if the difference it greater than 1.0, it's likely that an error has been made with one or both scores. If you're able to afford and access a REMS scan, you'll be able to get a reliable second opinion on this (osteoscanuk.com), as it uses more modern technology, more fully automated, so errors are far less likely.

That sounds a lot of height to lose in 2 years. Is it possible they measured you wrong on one of the occasions (unfortunately this isn't as rare as you might expect)? Have you had any other issues, such as slipped discs, that might cause height loss? It's normal to lose a bit of height as we age, but not at that rate. Osteoporosis only causes height loss if you suffer from spinal fractures.

Finally, has your doctor run blood tests to look for underlying causes of your loss of bone density? She should test Vitamin D, calcium and parathyroid in the same blood draw, plus thyroid, coeliac and full blood count.

[KayEmJay in reply to Met00]

I had all blood tests done 2 years ago including checking for parathyroid. Conclusion was it is genetics - my Mum and all of her sisters have poor bone health - osteoporosis or osteopenia. I have had no other issues that might have caused height loss… so can only assume it’s osteoporosis related. I do suffer with a sore / painful lower back at times? No idea if that means so have had fractures - asked my GP to look into the cause of the pain but she refused. Not necessary as there is no referred pain down my legs?

Interesting about the hip vs spine discrepancy- it’s been a significant difference both times. Not sure what I do about that?? Have no idea how much worse the numbers can get either!!

Thanks for the tip of Facebook group - will look that up!

[Met00 in reply to KayEmJay]

That's really poor of your GP to refuse an x-ray to check for fractures, given your osteoporosis diagnosis! Is there another GP in the practice that you could see instead? I had a big discrepancy (but not as large as yours) between hip and spine, which was even bigger on my 2nd DEXA scan. But when I later had a REMS scan, both scores were the same, with my hip score being accurate. If you have arthritis in your hip, that can cause your bone density to seem better than it is. If you have curvature in your spine, it's highly likely that your spine score will be wrong. If you're small-framed, that can make bone density appear to be worse than it actually is. None of these have any impact on the REMS scan.

[KayEmJay in reply to Met00]

My previous GP insisted on Alendronic Acid so this GP was an improvement!

I don’t have a small frame or arthritis so no reason to think scan is wrong? Tho maybe I should have a REMS to check…

[Cappuccinobaby in reply to KayEmJay]

Do you know what your calcium and parathyroid hormones levels were? Many GPs think if they are in range then it's normal but they work like a seesaw when one is raised the other should be low. If they are both high end as the same time then there is am imbalance which could mean you have hyperparathyroidism.....

[Cappuccinobaby in reply to Met00]

Great advice as usual

[marigold2018]

I have been on HRT for 15 months and have improved my spine from -2.9 to -2.3 but my hips have not changed. I had a REMS scan and a DEXA in 2019. I had another REMS scan a few weeks ago which showed the improvement in my spine. I am 66 years of age.

[Ange333 in reply to marigold2018]

Hi I am 66 as well with much worse scores.I am not on any medication yet but wanting HRT. My GP refuses to give it to me. I was wondering who prescribed yours? Thanks

[marigold2018 in reply to Ange333]

I went private to Louise Newson. I am only on a low dose of two pumps of gel a day. I take D3 K2 magnesium and boron . They told me I should be able to get my GP to prescribe it but I haven't as yet tried asking. I was waiting to see if it made any difference. I watched the talk ROS did a few months ago and the doctor on it said that HRT does improve bone density and you should be able to start it at any age as long as you haven't got any health conditions.

[Jaynesh]

The difference between your hips and spine are similar to the discordance I had myself. After considerable reading and research myself I paid for a REMS scan which confirmed my suspicions about DEXA with operator error and a mild scoliosis. Turned out the scores much better and equal all round and I was in the osteopenia range . I was told to by GP go down the AA route and was even considered so bad as to need parenteral treatment. It’s a worrying trend with nasty side effects. My mother took everything she was told to until she had had enough of side effects….she unfortunately fell recently and still fractured badly so it does make you wonder what it’s doing to us. There’s no rush, take your time take lots of good diet and supplements and definitely get a second opinion first. To me it was £150 well spent and if you can afford it please do.

[KayEmJay in reply to Jaynesh]

Thank you! I will look at getting a REMS scan!

[Linnet3]

Me too Jaynesh. I had 2 DEXA scans over a 4-year period which showed my hips to be in the osteopenia range; the first gave a spinal T-score of -2.5, the second -3.8(!), nearly 2.0 above my hip reading, despite improvements to my diet & exercise levels, and taking supplements. My GP (not mine actually, there is no longer any such thing at our practice), despite saying that 'sometimes I have trouble matching up the patient with the scan result' was insistent after the 2nd scan that I try alendronic acid, which I did, very reluctantly for 3 months, but had to stop because of horrendous heartburn. I also tried raloxifene but couldn't get on with that either. To cut a long story short I eventually managed, after several Covid delays, to get a REMS scan, which also showed that my spine score was in fact in the osteopenia range and matched my hip score. I no longer trust DEXA scans & wouldn't have another. KayEmJay, please try to get a REMS scan if you possibly can, even though I think they are now £200. The information is worth it.

[Jaynesh in reply to Linnet3]

I think it would be great if the ROS was looking into this more (maybe they are?) …put some pressure on NHS to look into REMS . It might save a fortune on unnecessary drugs and side effects for those that probably don’t need these meds at all. Also more nutritional advice …my GP did not have a clue about REMS or the supplements such as K2 boron zinc and magnesium that are needed to maintain good bone health other than prescribed advanced. It’s very much up to us to find out for ourselves. There’s a bit on the NHS website.

[KayEmJay in reply to Linnet3]

Thank you!!

[walk21]

I was on HRT for years for menopausal problems. It was only when I stopped it that osteoporosis took over and I have been in pain ever since. I did not know of the connection until later . Hope it helps you but take care if you ever need to discontinue it.

[FearFracture]

I was diagnosed with osteoporosis in 2019 at age 50 (lumbar spine T-score -3.9). I went through an unusually early menopause, was in my early 30s, and did not do HRT but have recently found an OB/GYN who is willing to prescribe it now—I’m just considering my options.

You should check out betterbones.com/testing/wha... and make sure you get tested for “secondary” causes of osteoporosis.

[Angelicspirit]

Hi KayEmJay,

My Dexa Scans were similar to yours at age 59. I started on bisphosphonates but couldn’t tolerate swallowing with kyphosis and scoliosis. I then went on Denosumab. Throughout all this, I was on HRT for a heart condition. I had a bad skin reaction to Denosumab and just remained on HRT. Personally I believe the gel is safest and absorbed better. However over the last 4 years, just on HRT, I’ve had 14 spontaneous fractures and now on Teriparatide (Forsteo) I believe HRT is a good back up. In my case, which is thought to be hereditary, it clearly wasn’t enough. I really do feel for you. Take care!