Really confused about T Scores

[RobintheBobbin]

I have been on long term steroids. Im 53 now.

In 2018 my T Scores were Spine -1.4. Neck of Femur 2.4 and Total Hip 2.7. I wasnt given my scores and no one contacted me to offer treatment. Ive only just found the letter today as I have access to my medical notes.

In 2022 I had another DEXA Scan. My spine was -1.6, so a bit worse if I am right ? But my Neck of Femur was 2.3 and Total Hip 2.6. So that was better ?

I only found out my 2022 scores last week when the Consultant wrote to me to arrange Vitamin D to get started on Zelondrate infusions.

Im really confused. Firstly I didnt think scores could get better and if Im right about the way the scores work, why am I being offered Zelondrate when some of the scores improved.

Am I looking at this all wrong ?

[Met00]

Are you sure your neck of femur and hip results weren't negative numbers like your spine? If they're negative, then yes, it does appear that they're slightly improved. However, DEXA scans aren't accurate enough for a 0.1 difference in score to be significant, even if the scan was done by the same operator on the same machine. I would say that, allowing for margin of error, all your scores have stayed roughly the same, in which case that's an achievement in itself, as it's normal to lose bone density as we age. What puzzles me is why it's taken your consultant 2 years since your most recent scan to decide you need medication, and also why you need it now but didn't need it in 2018!

[RobintheBobbin in reply to Met00]

Hi Sorry yes they were all negative. I was hoping they had improved but I get what you are saying about margin of error. But I will take it too, that they have roughly stayed the same :). I have had the worst experience since 2011. Ive had one mistake after the other. The only reason I got hold of my medical records is that they were accidentally sent to my employers Occ Health by email in a zip folder !! Ive read things about me at the age of 6 that I had no clue about ! I started going through them last night. Ive had 11 different Rheumatologists. I had one amazing GP but they left and now not so good. The treatment isnt joined up and the result has been me floundering on steroids for 14 years. I have no idea what the rush is now, but I was sent a prescription for Vitamin D to prepare for the Zelondronte and if Im really honest Im on the verge of saying no. I’ve kind of lost faith. None of this was talked through with me, just here’s the prescription. What’s worse is physically I feel the best now than I have done in 14 years. Very little pain and Im able to do everything I used to do before I got ill. I want to ask if I can wait until after my DEXA scan in 2026 to make the decision about Zelondronate, but Im not sure if Im being stupid. Thank you for replying .. since I found this site … ive felt much less on my own in this.

[Ludovic4 in reply to RobintheBobbin]

I was also on long term steroids - off now but I am sure they contributed to my osteoporosis diagnosis. The endocrinologist said that at - 2.7 I was considered borderline for medication. However the rheumatologist was insistent that I should start medication and was quite rude when I refused. The steroids and other medication left me with severe stomach problems and I did not want to add to this with osteoporosis medication.

I would be very careful about starting the medication as your scores do not seem particularly bad compared to many given on this site and if you are no longer on steroids that should help.

Good luck .

[RobintheBobbin in reply to Ludovic4]

Thank you so much for your reply. I have the same problem with some rude and forthright GP’s and rheumatologists and Im not the best at standing up for myself. I think Ive built up the courage to say no and to ask if I can think about this again after my 2026 DEXA. I made an appointment to see my GP to ask about it but he said he didnt have time to go through it with me, also said no to a dietician. With them accidentally releasing my medical records too, Im seriously considering a new GP. Ive been looking at some kind of magnetic treatment for osteoporosis and have emailed them today to get more info. Im hopething maybe this with diet and exercise might help me with the next DEXA results. Thank you again for replying

[ROSModerator Partner]

Hi RobintheBobbin ,

Just wanted to wish you a warm welcome to our community, we appreciate you being here with us It sounds like it's been really difficult and it makes a lot of sense to feel very uncertain about any next steps. It's really important that we feel informed when making any decisions about our health, so we wanted to let you know that we have lots of information on our website including being diagnosed with osteoporosis, understanding scans and results, and drug treatments: theros.org.uk/information-a...

We also have a helpline of friendly specialist nurses. As you mentioned understandably feeling confused at this time, we would really welcome you to get in touch with our helpline so you can chat things through and feel more confident in understanding your situation: theros.org.uk/information-a...

Thank you for sharing with our community, we really hope this can be a place for you to connect with others who understand.

Wishing you all the best,

Lulu

ROS Moderator