Just diagnosed with Osteoporosis - really upset

[Wishimaywishimight]

For context I am a 54 year old female with a strong family history of osteoporosis - mum, grandmother and sister, so this should not be a great shock but it has really upset me. Having a Dexa scan has been on my 'to do' list since before Covid (from when I turned 50 I suppose) but I only got around to it now and I am kicking myself - could I have prevented this?

The report shows Osteoporosis (-3.3) in my Spine L2 which is really bad numbers wise I think? Also osteopenia in other parts of the spine and in both hips. I am terrified of what this means.

I have a doctor's appointment this afternoon to discuss treatment.

Can anyone offer any advice or words of reassurance? Can I improve this or is it just a matter of trying to slow down the progress?

I don't have any advice but I'm watching for replies as I'm in my early 40's with a very strong family history of osteoporosis and I am having a dexa scan next week. Do you have any symptoms

Sorry I have no words of advice - just wanted to send you a virtual hug. Hope you have someone you can talk to about this.

Hi @rightherewaiting No, no symptoms at all although, I have been having backache for the past couple of weeks which I was putting down to getting a new monitor in work which was higher than my old one. In fairness I think that was the problem (it has now been adjusted!) but who knows.

It looks like I will be getting some sort of medication as well as advice on lifestyle changes, exercise etc.

I know I should have expected it really, given the family history, but I am still pretty shocked and upset.

Good luck with your scan. You are a good bit younger than me so hopefully your results will be ok.

I have been doing lots of googling this morning which is not entirely negative - it does seem like there is the possibility of stabilising the bone loss or even improving it a little. It is a positive that I have never had a fracture at least!

@12345change Thank you, I do appreciate that. DH is here with me and is being very reassuring while knowing even less about it than I do!

I have a doctor's appointment at 12.45 so at least I will know a bit more then about what it all means.

Very sorry to hear that - you are very young for this

What is your gut saying on this? What are your diet and exercise habits at the moment? Do you think there are things you can change?

It makes it less overwhelming if you know there are things you can do

Is this a test anyone can have on the NHS. My mum and grandma have/had it. I do loads of exercise and try to eat right but I didn't realise it was something to test for without symptoms.

If that's the T score it's comparing your bones with a healthy 30 year old woman. It's normal for bone density to decrease as we get older.
The Z score is more important. If you've got the results on the NHS app it'll be there. It compares your result with other women of your age.

I've recently had a bone scan. The way the result was reported was confusing. It said I had osteoporosis, T score was -3.4. But the Z score was -1.5 which is considered normal for my age.
GP agreed no need for osteoporosis medication and I should continue with my regime of calcium, magnesium, vitamin D and vitamin K.

@hamstersarse To be honest I am half surprised by the results and half not if you know what I mean. I did know that there is a strong genetic component and that, with my family history, there was going to be a good chance I would develop it however I have always maintained a healthy weight, never smoked, do not drink an awful lot (wine at weekends), am pretty good at exercise - have been conscious of the need for weight bearing exercise so do handweight videos a few times a week, interspersed with cardio so I thought all of that would help. Obviously not. I also take calcium and Vitamin D supplements.

One thing I have let slide post Covid is walking. I used to do much longer walks, now it is mostly 20 minutes or so maybe 2/3 times a week so that needs to be improved.

I guess I will see what else I need to do once I have spoken to the doctor.

@Hairush I am in Ireland so I don't know about the NHS. I have medical insurance and my plan includes a few 'freebies' which include the DEXA scan so I had absolutely no excuse for not getting it done sooner. Once I got the GP referral, I sent it to a private clinic and I had an appointment within 2 weeks and it cost me nothing.

Hello there,

Yes, if I reassure you on this my very first post on MN, diagnosed in 2014, I took bisphosphonate tablets once a week for five years after my first iffy dexa scan, and my numbers are now much better. (Mine in 2014 were: back -3.0, hip -1.7, wrist -2.7; now back -1.8, hip -1.7 and they no longer do the wrist measure apparently.[

I procrastinated for about six months before swallowing the first one. Do your research as they have some bad press, and some people suffer side effects, but I reasoned that I'd take chemo if I had cancer so...

Most people of your/my age would show osteopenia, I've been told, and indeed the dexa scans aren't particularly well thought of as they compare our bones with a 30 year old

I also have a strong family history, but luckily my recent scan was fine. (I have low vitamin d too and so I was worried). I have been on HRT for years for this reason though, and I think that must have helped. . A good friend has osteoporosis but with medication she is fine, another has osteopenia and is also ok.
So although scary, at least now you know your GP can take steps to sort it out.

@ungryHippy The T score is -3.3 and the Z score is -2.5 so that's still pretty bad I think. I had it done in a clinic in Ireland and they sent me a copy of the results which is good to have.

They have recommended "pharmacological treatment" and that I have another scan in 12 - 18 months "to assess response to treatment" so I really want to do whatever I can to improve my scores.

@Saint64 They just did my spine and hips by the looks of it. Hips are -1.1 and -1 so I won't worry about these. It's the spine that has me worried.

Thank you so much for your very (very!) reassuring post (you live up to your username!!). I am actually a little tearful, you have made me feel a little better. I had hoped that whatever I do from here will slow down progress but if I can improve my scores then that gives me something to focus on and some hope.

And thank you for making this your very first MN post, I will certainly remember it and you!!

@SirVixofVixHall That's what I'm telling myself. It was one of those things I had on the long finger for a while. At least now I know where I stand and can take steps to help myself. If I had left it longer then things would obviously have continued to get worse and I would most likely have had some fractures sooner rather than later.

I was diagnosed at a similar age. Proper Osteoporosis in the hip and spine. I was really knocked sideways by the news, so I totally understand how you feel.

(I had been on HRT for 5 years believing it would protect my bones but no such luck!)

Nearly 20 years later my DEXA numbers have stayed roughly the same. I take Ibandronic Acid one tablet per month. No fractures, still the same height.

It's a scary diagnosis but the main thing is that you are getting advice and treatment.

Good luck!

Good luck OP. Are you prepared, got all your questions ready?

I too have an appointment at osteoporosis clinic, next week. I had a DEXA scan at HRT clinic 2 years ago, and I've broken my back L5 and L1 in the 6 months, which is why I'm being referred to osteoporosis clinic.

All that I've read has actually been quite minimal and depressing. There's not much that you can do other than 'live a normal healthy lifestyle' and the advice is really bland like 'eat well and live well' and you feel like saying is that it? is that all the recommendations that you've got ?

It is really common, are you on HRT ? If not it is worth considering. I had put off my scan for a few years as I was worried about it, then realised how silly that was and got it done.
I do need to do more weight bearing exercise, my mother was badly affected with osteoporosis and my frame and colouring are just like hers, I know I need to take steps now to help my bones as I get older. I am a few years older than you.

@TeaTeaAndStrumpets Thank you so much, that is so reassuring to hear, both in relation to your Dexa results and also lack if fractures.

The panic is lessening a little so thank you, all of you who have responded 🙂

Hi @Oblomov23 I'm sorry to hear you have suffered those fractures, that sounds dreadful, I hope you are recovering ok?

I am sitting here with the report in front of me and all of my questions. I'm hoping they can offer something more specific than "eat well"!! I am very prepared to eat / do anything I am told in order to help myself.

@SirVixofVixHall I'm not on HRT. I was on the pill (progesterone only) right up until I was nearly 50 and have never had a period since then however I haven't had any other menopause symptoms of note so hadn't explored HRT. If that is what is recommended I will certainly look into it.

My mother is 81 and has had it for a number or years however despite a couple of fractures (which she fully recovered from thankfully) she is doing great, very mobile, walks a lot and is generally very well so I take hope from that also. She will be upset when I tell her though.

My DH was diagnosed with osteoporosis about 10 years ago. He does no weight bearing exercise, doesn't eat particularly well but has a prolia (denosumab) injection yearly and his dexa scan has remained stable.

@LovelaceBiggWither I'm glad to hear your DH's osteoporosis is holding stable, that is great news. I don't like the idea of an injection very much but if that's what it takes to keep the numbers stable (or improving I hope!!) then of course I will do it.

I was diagnosed with oestopenia when I was 49 & post-menopause.

I take Adcal D3 every day & I now go to the gym to do weight training.
Cardio wise, I only do low impact - long walks instead - as want to limit possible injuries to tendons, muscles, etc.
I've vastly improved my diet - less junk, more balanced.

I was told that it won't improve but I'm trying my damndest not to let it get worse.

@MenopauseSucks It's unsettling and upsetting to be told it won't improve. I am really hoping this is not the case and taking hope from @Saint64 's post above. Even if things can be prevented from worsening that is something I suppose.

Diagnosed about 6 years ago in early 40s. The way I look at it - in many ways we are the lucky ones as we know and can do something about it. I’ve also had Denosumab injections 6 monthly and the latest scan showed significant improvement. So there is treatment and it does work. By the way I was told that if you are on treatment anyway then HRT makes no difference (I didn’t want it). Good luck. Don’t panic. Been there and it’s ok.

Hi OP I sympathise!

If you are able to take it I recommend HRT which helped improve my bone density. Long story short, I was on HRT for a few years when my GP got concerned about breast cancer (even though there was none in my family and worries have since been disproved) so I stopped HRT for 18 months. I'd got osteopenia in my spine and hip and a BDS showed that this had progressed to full-blown osteoporosis during the time off HRT. I went back on it and my bone density improved so that I no longer have osteoporosis. Good luck.