Worrisome DEXA results

[Rik123]

I had 3 doctors tell me not to worry about a 12% decrease in my spine since the DEXA scans are not accurate when bone mass is very low. In addition in my case my spine has twisted and is not in the same position as in the last DEXA. On top of that the X-ray technician mislabeled the scan. For example the lined boxes on the scan were shifted upward on my last scan highlighting the wrong vertebrae. Common errors are made averaging bone mass also. I highly recommend the book " Great Bones" by R. Keith McCormick. All of this and much more is included in his book. Upon the author's recommendation I had a CTX blood test to indicate if the Prolia that I'm taking is actually working. And it is. I also had a phone appointment with Dr. McCormick who looked at my scans and previous blood tests to recommend certain other blood tests that I never had. All of that put my mind at ease.

[Anonimoveneziano]

I am going for a REMS scan this Wednesday exactly to get a second type of reading. I am due for another denosumab dose, one of too many tbh, and have been asking to take full blood markers including ctx and p1np, alp as well as the usual stuffbut no joy with the gp. Coming at the end of this denosumab dose ( 6 months) right now and wanted to have an account of my baseline in the hope of agreeing a discontinuation.

She doesn't want to give them saying should be the consultant to order them when the care has been handed down to primary more than 5 years ago. She gave me minimum blood tests and not even a FBC.

So I would be most interested to hear which blood tests the consultant ordered you.

Sounds like you are in good hands. 🙏

[Rik123 in reply to Anonimoveneziano]

These are the tests he ordered for me after reviewing all of my medical records. I believe his recommendations are individualized for each specific case. I couldn't get the P1NP. For some reason the lab was not able to do that test.

C-telopeptide (CTX)procollagen type 1 N-terminal propeptide (P1NP)

phosphorus

1,25 dihydroxyvitamin D

serum protein electrophoresis (SPEP)

PTH

[Anonimoveneziano in reply to Rik123]

Thanks. Interesting, I have never been tested for SPEP but would make sense also. In my case my WBC tends to be often on the low side, so I would be happy for that test.PTH occasionally, but should be always included in my opinion.

So up until 2nd lockdown Covid 19, in UK I would be tested for FBC, Vit D, kidneys and liver function, cholesterol, serum calcium, ALP, P1NP, eGFR, and inflamation markers. CTX not always, but it is most important to evaluate bone resorption at baseline before taking new therapy to track response, min and max values at different levels for different age group, not surprising post menopausal values need keeping in check if you don't want to fracture... and is so not prescribed.. insane.

So list of tests for prolia have been reduced by GPs by more than half. Crazy as it is for continuing one of the most difficult drugs with so many symptoms . Just need to read a few clinical trials and you may get chills down the spine.

[Rik123 in reply to Anonimoveneziano]

Sorry to hear about the reduction in tests in the UK. Here in the U.S. doctors mostly will prescribe tests if patients insist. I agree with you about the frightening side effects. But for my case I had no choice. I have 4 fractured vertebrae and t scores of -4s to -6s. I hope you can accomplish what you're looking for.