Finally! After more than two months I have been given my T-score. It is -2.0. Not sure what the implications of that are, but perhaps not a dire as the scary "summary" which was all that I had before, putting me into high risk of fracture category (because of pred). Frustrating effort to get that number. My GP claims she doesn't have access to the records. The hospital claims that all the doctors in the province have access to information on their patients. The osteoporosis clinic is only now booking people who signed up in June, so my wait was going to be another five months. I'm getting better at being a squeaky wheel!

11 Replies

  • A T-score of below -2.5 is considered osteoporosis. I think we all have to be squeaky wheels sometimes, we are all just too polite!

  • Heron, The range of bone density scores are as follows:

    Normal T score: -1 or above

    Osteopenia: below -1 to -2.5

    Osteoporosis: lower than -2.5

    So with a score of -2 you are in the osteopenia range, not by any means necessarily in the "high risk of fracture category" unless of course you remain on high steroid doses long term, if my experience has been anything to go by.

    A DEXA scan in 2011 when I reached the very low steroid doses, having started at 40mgs, was Hips: Normal at -0.6 to -0.8, and Spine: Osteopenic at -2.1. No treatment was thought necessary. And this was without any calcium supplementation but with a high dietary calcium intake, including milk, cheese and daily small pot of yoghurt. I also walked daily and joined Tai Qi and Nordic walking classes.

    A repeat DEXA in 2014 showed Spine: -1.6 and Hips: -0.5, so an improvement after being off steroids completely for 1-2 years at that time.

    Hope that helps to reassure you.

  • I am feeling a whole lot better. Thank you! It was carefully explained to me (carefully as to a slightly moronic child :D ) that the radiologist uses three pieces of information to assess risk, and risk is what is shared with the GP (and me). But I knew the other two risk factors - pred and prior fracture, and really wanted the one which is as "real" a number as one can get in these situations. It seems odd that it was so hard to find out. Now I feel that I can move on, feeling more confident that I've made the right choices so far.

  • They would probably say "high risk" simply because of the pred. Neither Celtic nor I had any change in bone density over several years of pred. I have only ever taken calcium and vit D, Celtic not even that. In your place I would take calcium and vit D and insist on a repeat in 12 - 18 months if you can. In the UK the intervals are usually 2 years which is also fair enough. If your bone density has deteriorated in that time then you review the situation. It may not change.

    You ARE at an increased risk of fracture because of osteopenia and the risk of it getting worse because of pred. There are however other factors at play which can be changed to reduce the risk of a hip fracture.

  • I will be able to get a second scan after one year. I am now very well informed about nutrition, supplements, exercise - in fact everyone will soon be tired of my proselytizing, especially extolling the virtues of Vitamin K2!

    Listen up, everyone, whatever your bones are like - TAKE VITAMIN K2.

  • My score is -2.6 and nobody ever kept it secret from me. In fact, the radiographer who took the scan told me on the spot. What's the point of all the secrecy? As I'm just below 2.5, I'm scheduled (sometime!) for bisphosphonate infusions and have to keep up with my Adcal which I like as it's my daily sweetie!

  • I was given a phone number today for the woman who actually looks up T-scores and other information for people who are registered to take an osteoporosis clinic (as I have been for several weeks). The two of us had a good laugh over the fact that owing to privacy concerns she couldn't release the results to me then (that's right, the results of my own scan) but would have to check that it would be ok so that I wouldn't have to wait until about March or April. But she did get back to me and told me the number, with the caveat that it was only part of the picture, which I already knew, but to me an important part of said picture.

  • Ah yes - but she couldn't know on the phone that you really were who you said you were.

    I was also told the results on the spot - however, the technologists who do the scans are not qualified to interpret the results and are not supposed to say anything. Even when in the UK it is a clinical scientist who has forgotten more about the test than any doctor ever learnt who is the person that reads and reports the results, they are not the people who present the result to the patient.

  • She did ask a couple of the usual questions (birthdate, etc, to confirm my identity) and she had my name on her phone. It is truly weird that my GP claimed that she did not have access to the full information either, and she was the one who told me I had osteoporosis which sent me into a real tailspin for a few days. I do understand that they want people to be in a situation where they can have their questions answered right on the spot, but isn't that what my GP is supposed to be able to do? And low bone density is not quite the same thing as, say, a cancer diagnosis where you'd really want to be in the same room as your informant.

  • Privacy! Isn't it incredible. Apparently in UK we are entitled to see all our medical records. When I see my GP he always turns the computer screen towards me so that I can see for myself the results of blood tests and so on. I'm not sure I would want to see everything under all circumstances!

  • As the day went on yesterday I felt lighter and lighter, as though a great weight had been lifted from my shoulders. The medics can say all they want about the T-score having minor relevance, but to me it is the one thing I can do something about - I can't stop taking pred yet, and I can't not break a bone two years ago. But I can work on improving that T-score. Feeling happy. :)

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