Different readings on different dexa ... - Bone Health and O...

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Different readings on different dexa machines

poddysss•

7 years ago•21 Replies

Now listen here!!!!!

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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21 Replies

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Kaarina7 years ago

Thank you for posting your great news.

I was given to understand that to be able to compare any DEXA scan results properly they had to have been performed on exactly the same machine.

I am pleased that you came away from your appointment a happy bunny.

Blizzard1646• in reply toKaarina6 years ago

Can you please email me Blizzard1646@aim.com

I did test on separate machines and is the spine first to how low bone density??

Kaarina• in reply toBlizzard16466 years ago

I would advise you to remove your email address for your own security. There is a "Chat" icon on the site, that can be used for private messaging.

7 years ago

Very happy for you. I was always concerned that for true comparability you seemed to need same machine (and same technician).

Kaarina• in reply to7 years ago

Yes, me too, same machine and the same technician who is very good at her job.

Toplady7 years ago

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...?

veriterc7 years ago

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?

7 years ago

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

poddysss• in reply to7 years ago

Try kefir ( from polish shops )instead of actimel

• in reply topoddysss7 years ago

Was actually reading about that and its better for the gut than actimel too. There is a polish shop in the village near me so will certainly try.

Hannibal• in reply to7 years ago

Tesco does Kefir in two sizes small 69p and large £1.70 I think

Jennifer7• in reply toHannibal6 years ago

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?....

Met00• in reply toJennifer76 years ago

I got my kefir starter kit (a teaspoon of grains) from ebay. It grows as you use it, so you then have spare you can give to others.

Fran577 years ago

WOW!

Fran 😉

Timothy01727 years ago

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...

Any ideas anyone? Suggestions welcome!

Thank you!!

poddysss• in reply toTimothy01727 years ago

My first prof is an endocrinologist

The second prof is a rheumatologist

Both good but the second one is an osteoporosis specialist

Look them both up ( they are private though , sorry but I will spend money on my health)

Prof Gordana Prelevic endocrinologist

Prof David Reid rheumatologist ( write guidelines etc for national osteoporosis association)

Good luck

I'm planning on going to some conferences so I become the expert!!!!!'n

Timothy01727 years ago

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

poddysss• in reply toTimothy01727 years ago

No problem we're all in this together!

Timothy01727 years ago

You’re absolutely right about that. I’m so amazed at the generosity of those giving their time and advice. X

LynneH-197 years ago

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?

poddysss7 years ago

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