UK audience DEXA

[Poppydaydream]

I was diagnosed 3 years ago with -3.4 T score. I don't take meds. I would like to know state of play now but a rather hostile Dr said to me she wouldn't refer me because the request would simply come back saying ' Treat her'. Has anyone else had second DEXA?

[Kaarina]

If you can afford it you can go private and have a REMS scan. I find them more reliable than DEXA scans. There is of course no need to be referred by a doctor. osteoscanuk.com/ This makes interesting reading: healthunlocked.com/boneheal...

[Poppydaydream in reply to Kaarina]

Thanks Karina. I don't have much confidence in DEXAs and this is really interesting. Thank you

[Kaarina in reply to Poppydaydream]

I am having my second REMS scan in November. The last one was two years ago. I was so pleased to be able to get a score for my spine with a REMS whereas the DEXA could not provide me with this information as I was told it would be totally inaccurate because I have scoliosis. I hoping my scores are the same as two years ago. I was told I was doing OK and to continue taking the supplements I listed to him and to continue with the walking. 🙏

[Smittybear7 in reply to Kaarina]

Great information. I would like to follow you.

[Met00]

I agree with Kaarina. Diagnosis should involve at least 2 similar scores, at the spine and hip and/or femoral neck. If there's a big difference, that should lead to questions about the accuracy of DEXA. Also, medication should only be recommended on the basis of a FRAX (fracture risk) score showing high risk, not on the basis of t-scores alone. I was diagnosed with a spine score of -3.2, hip - 2.3, then nearly 4 years later spine - 3.6, hip -2.5. 15 months after that I had a REMS scan, with both spine and hip -2.6. REMS is more reliable than DEXA, so I trust that far more than DEXA. I'm due to have my third REMS scan this summer, worth every penny.

[Smittybear7 in reply to Met00]

Is that test available in the United States?

[Met00 in reply to Smittybear7]

In limited locations. If you ask on the American Bone Health site, someone may be able to tell you where, or contact Echolight, the parent company.

[Smittybear7 in reply to Met00]

Thanks

[Poppydaydream]

Definitely going to look into this. I will have quite a long way to travel but will try to organise this. Thanks x

[Flowergirl24]

I’ve had 3 Dexa now. Just waiting for my results. I’ve never heard of REMS. How much is that type of scan?

[Met00 in reply to Flowergirl24]

Currently £210 in most venues, but I think it's more in Edinburgh. Or there's another company that does it cheaper in Amersham

[Mistydawn]

Hi, I was told DEXA scans are repeated every two years and I have one every two years. I also have osteoporosis in the lumbar spine and osteopenia in my hips but do not take any meds. I’m in the U.K.

I’m due a DEXA shortly and will also pay for a REMS at around the same time to compare the results.

[Poppydaydream in reply to Mistydawn]

Keep us posted Misty.

[fenn]

I was also told, if you don’t have the medication there is no point in having another DEXA. So, I’ve had two REMS scans now, 2 years apart and due a 3rd at the end of this year. I had a rather disparate DEXA score, well into the osteoporotic range. The REMS put me borderline/just into osteoporosis. No medication, relying on diet, supplements and exercise.

[Smittybear7 in reply to fenn]

WHAT DO YOU TAKE?

[fenn in reply to Smittybear7]

Hi. Magnesium, Vitamins D(3) & K2 Mk7, Boron and Calcium Citrate. I take the Calcium because I’m ‘dairy free’.

[Fifelass16]

After 2 DEXA scans both saying I needed medication due to osteoporosis, I tried the tablets for a short while. Had terrible stomach problems with them due to my haitus hernia. They then tried to convince me to have the iv infusion but I was too scared of the side effects, once its in you're stuck with it for a year! I asked about REMS and was told "its just a fad!"On June 1st I had my first REMS/osteoscan in York and came out in a much happier state as I was told I DONT have osteoporosis but midway on the osteopenia range of the scale! I could have done cartwheels! (Metaphorically speaking!)

No drugs just a range of vitamins, minerals, walking and healthy eating! Will have my next one in 18 months to two years. If you can arrange one, for your peace of mind, dont wait!

osteoscanuk.com/

P.S. The DEXA scans were done because of the drugs I've been on long term for hypothyroidism, breast cancer and parkinsons. All which cause bone thinning.

[Poppydaydream in reply to Fifelass16]

Really good news! And after all the posts I've read and info online I'll be booking one soon. Thanks.

[Nuthatch in reply to Fifelass16]

I had my first REMs in York that day too. Spine score much better than with DEXA and Nick explained I have a degree of scoliosis. Advised me very strongly to do 20 mins of strong and straight exercise every day to minimise deterioration. I’d been a bit upset that a DEXA after 2 years of teriparatide showed almost no improvement in my spine but I now understand that due to my fractures and the scoliosis it was inaccurate. I take Raloxifene - won’t touch bisphosphonates. Because I have existing fractures due to really poor care from previous gp I still have a fracture risk but lower than previously advised. Totally worth the cost, and will definitely have another in 2 years. First time I’ve had an opportunity to discuss in depth and be advised about exercise and supplements. And went on a fab llama trek on the Saturday with the wonderful Nidderdale Llamas - beautiful creatures and a beautiful part of the world where I was lucky enough to grow up. So hot! Back in the cool, grey north east now reading reports of a heatwave everywhere else!

[Smittybear7 in reply to Fifelass16]

What exercises do you do,what supplements and do you use a vibration plate?

[Fifelass16 in reply to Smittybear7]

Apart from D3, K2 and Calcium, nothing else so far. I'm going to order some of the other vitamins and minerals that were mentioned in my report after my osteoscan. I hadn't even heard of vibration plates til then but will now try to access one as they seem very expensive! My main exercise is walking so far.

[Houseelf in reply to Fifelass16]

Hi, may I ask what vitamins and minerals were advised on your REMS report?

[bluebird567]

Hi Poppydaydream and other commenters. I am astonished by the difference between what is being offered by the NHS - and the times being recalled for 2nd/3rd scans etc. if ever. I had similar 'DEXA' scores in my first scan in 1994. I wasn't offered another until I developed Primary Hyperparathyroidism following complete exhaustion mid 2018. This took a further 18 months before my 2nd DEXA scan. Maybe it was because I stopped taking the drugs prescribed which I felt were damaging my bones - not building them up as my GP had said. The pain in my femur (which I had broken as a child) was terrible. I have only heard about REMS on this site and will investigate. I think Osteoporosis is the first thing our GPs look to and prescribe for, before looking at what is actually going on in our bodies. I try to walk a lot, are fortunate to have an allotment, and do other things to keep my bones as healthy as I can. Best wishes to all on the path to good (bone) health.

[Southerngirl2787 in reply to bluebird567]

Did they remove your parathyroid tumor/adenoma? I had one, my doctors ignored it for years, said it was just stress. I was so tired I could hardly function, and that was within 2 hours of getting up and showering in the morning! I finally ran my own labs, charted them, realized my blood calcium was way too high, there's a flaw in the ranges in the US...it includes children...so we should never be over 10.0 if we are over age 35. Self referred to surgeon, had it removed, and within a month I felt so much better. My DEXA improved from severe OP to slightly Penia within 2 years. The osteo meds and supplements do nothing to help when you have a tumor/adenoma from hyperparathyroidism...and taking calcium is dangerous. Of course, I discovered I had extensive damage in my spine from the years of having the tumor...and 7 fractures later, I'm in repair healing. The DEXA is a flawed test...and I've decided to stop relying on it and waiting for results.

[bluebird567 in reply to Southerngirl2787]

Hi Southerngirl2787, Sorry for the long post. I had two removed one being the culprit and one said to be enlarged but 'just fatty' - I love these medical term. 🙄. At the same time they checked the lymph nodes further in the chest as that was 'flashing' on the scan (where you're injected with a fluorescing agent) as apparently these little parathyroids can end up in different parts of the body - not just in the neck area. Well that's what the doctor said. According to my surgeon, my readings had reduced straight away after surgery, although I still didn't feel great. A further blood test 6 weeks after surgery showed raised parathyroid levels again but luckily it did go down to normal levels after about 6 months. I do have more energy now but sometimes get bouts of tiredness from time to time. I think parathyroid desease not only affects our bones but the kidneys too with too much calcium leaching into the blood. Long before the diagnosis of Primary Hyperparathyroidism, I had one of my kidneys removed due to it not functioning. It's amazing what we learn about our bodies isn't it.

[Southerngirl2787 in reply to bluebird567]

I agree that there are many effects from having parathyroid disease. I take NAC supplements to protect kidneys, great stuff. It took nearly a year for my PTH labs to get consistently normal. I had it too long. Now that I'm on Tymlos, the PTH lab this week showed it very very low, so I guess the Tymlos is working. Still makes me nervous after having a tumor/adenoma, but doc is running labs, and I'm running them to check calcium/PTH as well.

[Mavary]

I had two Dexas but they were two years apart. I’m told now I won’t have any more unless any more fractures happen. My bone score for my spine was -5,5 it is now after about five years of medication -4.3.

[Mavary in reply to Mavary]

They tend to offer X-rays more than they will Dexas.

[Justme16]

I had first dexa 2017. I Refused drugs and followed natural route. Had 2nd dexa 2019 - great improvement. Nurse told me to continue what I was doing and would get next dexa in 2 years. Due to COVID and waiting lists won't get one till next year. Interested in REMS but long journey or wait till next in my area next April.

[Poppydaydream in reply to Justme16]

I'm interested and encouraged that your score improved. Well done. You are lucky to have been offered second DEXA. I did read that you must have it on the same machine, with if possible, the same person who gave it to you. Did you? I don't have a lot of faith in them now and definitely going to try to get a REMs one but it's cheered me up to hear of your improvement. Thank you.

[Justme16 in reply to Poppydaydream]

Yes, same machine and person.

[Houseelf in reply to Justme16]

Hi, I tried searching your username justme13 and it doesn't come up with any posts?

[Kaarina in reply to Houseelf]

No wonder you cannot find this user. It is Justme16. Just click on her username a little above where you have just posted saying you cannot find it.

[Houseelf in reply to Kaarina]

Thanks! I just searched that because they replied to the post by Smittybear7 below to search under the different one "Hi smittybear7. All information under my previous username Justme13" and I am interested like Smittybear7 in what the natural approach to improvement used was.

[Kaarina in reply to Houseelf]

Does this help? healthunlocked.com/user/Jus... You will be able to click on all their posts and replies.....

Or you can go to Members and type in the username you want to find.....

[Justme16 in reply to Houseelf]

Did you use capital 'J'

[Smittybear7 in reply to Justme16]

What did you do for the improvement. Supplements, exercises, weight training, vibration plate? My rheumatologist walked out of the office when I said I wanted to try the natural route. He said I should be on foxamax.

[Justme16 in reply to Smittybear7]

Hi smittybear. All information under my previous username Justme13

[Smittybear7 in reply to Justme16]

What was the natural route that you use? I'm refusing medication at this point I want to try supplements exercise diet. Any suggestions would be appreciated. Thank you

[Raleigh59]

I think you can consider a new doctor