If any of you have followed my posts in the last two weeks ( I was New here)
I was devastated to find that my t score for my spine had deteriorated from -3.00 to -3.5 and -2.7 , 2 years before
Shock horror and now time to go on the meds...
This was clearly a reluctant but necessary decision.
So today I tightened my wallet and made my way up to Harley Street for a second opinion.
I had another dexa and then went to see prof.
After an opportune x ray five /6 years ago I was found to have osteoporosis ( no fractures ever before or since) well I learned something today which may be of both use and interest;
Did you know that there is a universal matching up / calculations of the scores for hip and wrist on all the different types of dexa machine? But NOT the spine?
When prof took all my readings, including the latest seemingly worsening reading, and adjusted them for all the different machines get this!!!! MY SPINE ( which is the bad one) HAS NOT WORSENED AT ALL IN SIX YEARS.
So how are we mere mortals meant to manage this disease without these beautiful experts. I could have kissed prof. I said " I'm beginning to smile a little " and he said " you should be grinning from ear to ear with this news "
Good luck always people
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poddysss
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I had mine done on two different machines, even though I knew you should have the same one (the appointment was for a different hospital so had no choice) My scores had improved, should I be worried I wonder...?
VERY interested in what you write, and it proves that as patients we are put last. I was a patient at the Marsden's Chelsea site; they didn't have a DEXa machine, so I crossed the road to have scan at Royal Brompton. Then the Marsden gets it's own machine, but based at their Sutton site - miles away. I am told I can no longer get this at Brompton, instead the NHS wastes money (and my time - but that doesn't count) in fetching me by hospital transport, driving me an hour to reach Sutton, giving me scan then another long drive home. When I go to have reading by doc. he tells me "I can't tell - the scans were done on different machines". I enquired about cost if I had it done privately - I think it was £120. The next week was staying with a friend in Italy - she said she had to go and have her DEXa scan done - and it would cost £40.
Something is very wrong with NHS accounting, and we have to suffer as supposedly it doesn't have enough money. Perhaps private companies that operate many of the machines are rooking the NHS?
My rheumatologist wasn't happy about the fact my gp put me on Fosavance for osteopenia. He maintained, upping calcium intake with Actimel and a daily walk was the best way to deal with it. I have issues with the Fosavance so needed an endoscopy and the gastro said I had two choices a dodgy tummy or dodgy bones. For now have upped my cheese and diet and walks but will see if my gp agrees with me
If you can find the grains anywhere you can make it yourself with just a glass of milk a day..Here in Greece everyone seems to know someone who makes it so they hand around the 'grains'...(like soft cauliflower..)..Maybe health shops have it in England?....
Can I ask what sort of a consultant you saw? Was it an endocrinologist? I don’t know quite what specialism to be aiming for - no one seems to be an Osteoporosis Expert as such. Very confused! Mind you I’ve got lupus and hypothyroidism too so it makes things more complicated. Meaning I don’t know who to see...
Thank you so much! I will look them up. I’ve bought some books on Amazon so I find out more. I won’t get the Dr Keith McKormick book (I heard a radio interview online with him) for quite a few days. He was very interesting. I wrote about it on a post somewhere. I’m seeing my GP next week and will insist on more tests and a referral so I need to do some more research! I’m happy to go private like you if necessary. Will let you know how I get on. Thanks again! Xx
Hi Poddysss I’m new here, so have only just see your posting. I too assumed the same scanner needed to be used as the Dexagura, the expert on the NOF Forum always says this.
I must confess I have no idea which particular make/ type of DEXA machine was used for my 2 scans as I wasn’t given an original printout of the results.
Did you already have this information, or was your consultant able to obtain it, to then do the necessary alterations?
I had all but the first dexa done privately and so the respective consultants told me the clinics to attend to have their preferred machines. If you pay privately then you are entitled to have the scans the consultant can then see by the scan which machine it was done on. Hope that helps.
Consultants can do an algorithm to check the variation of results
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