Recently diagnosed

[Awaywiththeheiddoon]

Hi has anyone diagnosed with osteoporosis in spine with a high t number I’m -3.8 managed to avoid breaking bones? I’m lucky to have been diagnosed before a break but I’m worried as -3.8 seems bad.

[Olliemaya]

Hi I have a -4 in my spine and like you quite concerned about the low score. I think I have had osteoporosis for many years but now last year been diagnosed. I am 63 with no fractures so far and hopefully keep it that way. I was on AA but decided last year to stop it as I felt as if I was having to clear my throat constantly. I am taking no medication and have a osteoscan booked for October. Will wait and see what the results are from that. Its very worrying when you are told something like this when you feeling healthy.

[Awaywiththeheiddoon in reply to Olliemaya]

Hi yes I know what you mean. My anxiety is quite high right now. Good luck.

[G0riLLaJamb0]

Hi, I’ve also got a high T score on DEXA scan in my spine, and have been at “high risk of fracture” for nearly 9 years, starting out at -3 in my spine, which has gradually got worse and is now -4 on DEXA scan. Telling you you are at high risk of fracture is enough to send anybody into a spin! ! I decided at the beginning to deal with this with diet and exercise and have not taken any of the medication. Up to now I have been lucky and not fractured, thankfully. Like you, I have been so worried about this, so I decided to have a private REMS bone scan with Dr Nick Birch, (I’ve now had 2, my last one was last month). If you are in a position to have a REMS scan, I would recommend it. If you look up Osteoscan on the internet, you will find his website and where he is doing his “pop up clinics”, or you can book to go to his main clinic near Daventry. It is becoming very popular now. The difference with the REMS scan to the DEXA scan is that REMS provides you with not only your bone density score but more importantly provides a fragility score which indicates the strength and quality of your bones and not just the bone density. You can have low bone density, BUT have good strength, quality and architecture in your bones. I completely understand where you’re coming from to be given a diagnosis like this. You can also speak to the nurses on the ROS site, which I have done in the past and who are also very helpful and understanding. Good luck to you 🤗. PS my T score on my REMS scan now shows -3 in my spine and hips.

[Awaywiththeheiddoon in reply to G0riLLaJamb0]

That is fabulous I have just booked a REMS scan as both replies I recd recommend this. I’m seeing Dr Birch in Glasgow in October. Thank you both so much for the info and good luck to us all.

[G0riLLaJamb0 in reply to Awaywiththeheiddoon]

That’s great news, good luck 🤗

[TerriersAll]

Hi - I did have a spinal fracture, which didn't impact me greatly and followed on from some excessive bending, twisting and lifting. I subsequently found out I had poor bone density (-4.2 spine) from a DEXA scan. Like you, I was completely taken aback, having been fit and healthy with no known risk factors. I also then had a REMS scan, because it felt like there was more to it and that showed I have good bone strength with only a mild fracture risk, which explains why I seem to be able to do a lot but not suffer injury. I agree with the post above - the ROS helpline is really good and the nurses there will listen to your concerns and give informed advice. Good luck.

[Awaywiththeheiddoon in reply to TerriersAll]

Thanks I’ve booked a REMS scan in October so I just pray like you I have good bone strength. 🤞 Hope you keep well. I’ve joined ROS and did find them very helpful. Seeing my Dr on Thursday so feeling a bit anxious about that.

[TerriersAll in reply to Awaywiththeheiddoon]

Hope all goes well. One thing I found, though it won’t necessarily be the same for everyone, is that GPs can be quite poorly informed about osteoporosis. Don’t be afraid to challenge or ask questions or bring information to your GP. Self advocacy can take a bit of courage but it’s worth it.

[Awaywiththeheiddoon in reply to TerriersAll]

Yes I totally agree. I’m going to a private Dr because I had a terrible experience with local GP practice it is abysmal.

[Notenoughcalcium]

I've just been diagnosed and have a spinal score of -5.1 and hips of -2.9 with 5 spinal fractures.Am currently not on any treatment but have just had a consultation about going on Evenity for a year. Hoping to be recommended for this.

[Awaywiththeheiddoon in reply to Notenoughcalcium]

All the best hope the treatment works well. 😘😘

[Mavary]

you are very lucky to have a bone score of -3.8. It’s not brilliant but it’s not as bad as I first was. Mine was -5,5 to start with. After 2years of Terraparatide it was -4.6. I don’t know any more because I’ve never been asked to have another dexa scan.

[Awaywiththeheiddoon in reply to Mavary]

Hi I’m sorry to hear your score was so bad but that’s a really marked improvement. I’m really pleased for you. X

[Mavary in reply to Awaywiththeheiddoon]

Yes me too. It could be even better now after a few years on Denosumab.