just wanted to share my good news with you all. I broke my back after a high impact fall from my kitchen worktop onto the floor in 2020. I had to fight for a Dexa scan after being advised to start bone meds. I had the scan last March results as follows. Dual Femur total -1.5 and lumbar spine -3. I was told (to my great surprise) that I have Osteporosis and advised to take Alendronic Acid. I tolerated it for 5 months and then spoke to a very lovely ROS advisor who pointed me in the direction of Raloxefine. I have been tolerating it well since last October. I have, however always questioned the discordance in my Dexa scan scores and therefore booked a REMs scan with Dr. Nick Birch of Osteoscan. It’s the best thing I have ever done as I have found out today (to my great delight) that although I do have mild Osteoporosis (readings -2.5 hip and -2.8 spine ) that my bones are in fact very strong!! I have been advised by Dr Birch to come off the Raloxefine as he reckons it won’t do me much good and instead explore HRT. I have to go back and see him in 2 years to see if the scores improve again. This has been a revelation to me and I can’t believe that my bones are so strong and my fracture risk is very low. I have been arguing with my GP for over 2 years over this and was told that if I didn’t take the bone meds that I would end up with a dowagers hump!!
ladies never give up and stand up for yourselves. I cannot recommend going to see Dr Birch enough. It’s your bone quality that is important
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That's great news and must be such a relief! I'm so pleased that more and more people are hearing about REMS scans, as they're more reliable than DEXA. They've been shown to be of similar accuracy to DEXA when both are done properly, but DEXA scans are far more open to error.
Thank you and yes am so very relieved. Dr Birch has asked me to go to my GP and get a test for SIBO(small intestine bacterial overgrowth) as this may have contributed to the low bone density. If it wasn’t for this forum I would never have heard of REMs scans
That is great news and thank you for sharing the information about Osteoscan. I am interested in REMS scans so your post has prompted me to pursue this.
I’ve had a couple of REMS scans now, two years apart. Nick puts everything into perspective, he tells is as it is, but doesn’t put any pressure on you.
Your bio shows you are in the US. Me too. Unfortunately REM is not widespread here yet. Echolight opened a corp. HQ in Seattle, Washington relatively recently. I emailed the company several months ago and below is the reply that I received. My guess is that within the next 2ish years there will be REM scanners in several major cities/medical centers. Unless you live near one of the locations listed below (or are willing to travel to have the scan done) it's a waiting game at this point.
I am Vicki Baldwin, the Clinical Application Specialist for Echolight Medical, USA. I was given your information because you inquired about being able to find a facility in your area to have a scan performed.
Currently the sites that are available for clinical scanning of patients are in New Jersey (2), North Carolina (2), and Maryland (1). We are working very hard to get the word out of our newly open US operations, and we will update you of any openings near you if you want to be included on our mailing list! I am attaching a pamphlet of information meant to be printed and share with your Doctor.
Below are sites available for REMS exams:
Dr. Kimberly Zambito ( Orthopedic Surgeon)
Mercer-Bucks Orthopedics
Lawrenceville, NJ
855-896-0444
Dr Andy Bush ( Orthopedic Surgeon)
Central Carolina Orthopaedic Associates
Sanford, NC
919-774-1355 (ask for James)
Dr. Edmund Maclaughlin (Rhuematologist) and Dr. Curtis Foy (Family Medicine)
Rheumatology Associates of Delmarva
Easton, MD
410-819-6545
StrengthX
Dr. Mike Lewen (Chiropractor, Exercise Science)
Asheville, NC
828-505-7200
(Brand new location, call for scheduling information)
XBody Health, Wellness, and Spa (Bone Density only, Bone Quality currently not available)
Wayne, NJ
973-869-5806
Locations coming soon: Lubbock, TX; St. Louis, MO. As stated above we are in talks with many more and will update this list as they become available.
Cat551, which NC location did you go to for your REMS testing? and if you don't mind me asking, what did they charge? I'm assuming that driving 7 hours means it was out of state and you had to out of pocket for the scan.
I'm currently hunting for a DEXA imaging center in my state that has TBS capabilities and I am expecting a call back this week to see if the location I was given can do TBS, but if the REMS gives a trabebular bone score I would consider just driving to NC too and paying out of pocket if it doesn't cost too much.
It was in Sanford, NC. Dr. Bush is the orthopedist there. I drove from N. Atlanta area. The out of pocket cost was $60, last summer when I had it done.
Great. This is the location info listed in the email I received
Dr Andy Bush ( Orthopedic Surgeon)
Central Carolina Orthopaedic Associates, Sanford, NC
919-774-1355 (ask for James)
Drive-wise and cost-wise that is doable for me.
Did you feel like you gained any type of valuable information by having the REM instead of a DEXA and does the REM show a TBS (trabecular bone score/scan)? Did the REM shows you bones are better or worse than your previous DEXAs or about the same? Overall, do you think it was worth the drive? Lastly, did you have to get a referral from you doctor or were you just able to make and appointment for an REM scan on your own?
Interesting enough, the REMS scan was opposite of my DEXA scan score. That is, my spine was worse than my hips with DEXA, but it was opposite with REMS. I was told my spine score was low with DEXA because I had a laminectomy and some of the bone was removed. The REMS looks at the area of bone along with other factors. I was glad my spine score was better and also that my bone fragility score was good. This helps me not to obsess about a fracture 😕. The fragility score is similar to the TBS score. The doctor calls you and goes over your results in depth. I hope that helps.
BTW, still decided to start Forteo at the beginning of the coming year. It’s my best shot at going back to osteopenia. I don’t want to worry about trying in vain to keep my scores up.
I took alendronate for 1.5 years--had digestive tract issues so stopped taking it the week of my 2nd DEXA. My lumbar spine "improved" from -3.9 to -3.7 according to my 2019 and 2021 DEXA summaries; however, when I got the detailed full DEXA reports I think that my 2019 DEXA was not done "correctly". It looks like there is more curvature in my spine in my 2019 DEXA than in my 2021 DEXA, which makes me think that I wasn't positioned correctly on the scanner in 2019, which can skew the results.
My hips are both around -3.1 or -3.0, and again when I compare my 2019 and 2021 DEXAs I think there was an error with my hips in the 2019 scan. The 2021 DEXA shows that my left hip improved by like 10% and my right hip got worse, but really what these changes did was to bring my left and right hip numbers into alignment.
My endocrinologist only looked at the summaries when he was prescribing meds and his interpretation was that my left hip had improved significantly because I was taking alendronate. Someone on this site pointed out that bisphosphonates don't target the worst area. When taking them, if there is an improvement, it should sort of be all over, not just one hip.
Unforturately, I had know idea that the DEXA summaries I had been given weren't the full reports.
Since I could no longer to take alendronate, my doctor prescibed a zoledronic acid infusion based of his incorrect assessment. I learned that I wasn't looking at my full DEXA reports after I got the zoledronic acid infusion. It took a lot of work but I finally got copies of both my 2019 and 2021 full DEXA reports and that is when I discovered that my 2019 DEXA seems "off".
My endocrinologist is expecting me to have another zoledronic acid infusion this November, but I want more information before having a second infusion.
I'm 53 and I don't have any fragility fractures and I would really like to keep it that way so I need to do something to improve my bones so I can hopefully stay fracture free. In January 2022, once everything started opening back up after COVID, I joined a gym and I go every other day or at least 3 times a week and I walk daily and I have changed my diet and added in a few new supplements etc and I would really like to give natural remedies a chance. When I get my next scan, which I currently have scheduled for 2 weeks from now, if my bones have improved I won't be able to say what caused the changed: the zoledronic acid, my diet, the supplements, the gym, or everything.
Additionally, I was originally told that I could do HRT but I have found a new OB/GYN would is willing to prescribe it so I might try the HRT instead of the zoledronic acid.
Any way, I will reach out to the NC REM scanning location and see if I can book an appointment for a scan--if I learn that my bone streghten is relatively good that will give me a more confidence to persue natural means of improving my bones. Right now, every time I up the weights at the gym, I think I hope this isn't the day my hip snaps. I'm taking it slow but there isn't much guidance on what exactly to do and it seems like a lot of the osteoporosis exercise programs are aimed at women who are considerably older than I am and when I have asked for guidance from my doctors, as you are always told to do, they really don't have any answers as far as what to do or not to do exercise wise, so know my bone strength really could prove useful.
A REMs scan is a radio frequency echo graphic multi-spectrometry scan. It differs from a Dexa scan as it is just like an x-ray. The REMs scan is always carried out by Nick Birch on the same machine so there are no operator errors or machine errors.
Thank you for reporting your experience. Very encouraging. I'm already booked in to see him in May. Whatever the verdict I look forward to an opportunity to discuss the result as opposed to a rushed gp phone call at the end of the day.
Very happy for you! Could you please share how your doctor determined that your bones are strong and you don't need the meds. Is there something that shows up in an REM that doesn't show up in a DEXA scan that let him see this? Additionally, is he recommending the HRT specifically to increase your bone density or for other reasons?
I'm in the US and Echolight doesn't have an REM scanner in my state or any of the neighboring states, so it's currently not an option. I am looking into get a DEXA with TBS but I am having to hunt down an imaging center that has the capabilities to even do this. I'm currently waiting for a call back from one imagine center that is 4 hours away, but I will make the drive if they can do a DEXA with TBS.
Am sorry to hear that you have difficulties in getting a REMs scan. I had to travel quite a distance to get mine as there are only certain locations in the UK that Nick Birch comes to. Regarding the diagnosis, the scan measures your bone density and also your bone strength. So although my scores for bone density are consistent with mild osteoporosis , my bone strength readings are fantastic for my age (56) HRT has been suggested as an option to help bone density. Nick doesn’t think the Raloxefine will make any difference to the density. I was told the only way I would break another bone would be to have another high impact fall so no more worktops for me!!
I know the bone strength scores are given on a scale of 0-100. Did Nick Birch break down specific ranges or just tell you your scores and that they're fantastic. Either way, I'm happy for your result.
Yes he said that 1-10 was the best the score could be and that hardly anyone gets that score and the worst was 90-100 was the worst and that hardly anyone gets that score either. My score was 17.1%. I couldn’t believe it
Yes, very helpful, thank you. Hopefully, I will be able to get the DEXA with TBS this year.
Hope this question isn’t too noisy, you are 56 now, how old were you when you went through menopause? I’m asking because I went through pre-mature menopause, I was 32, and due to the horrible healthcare system in the US at that time, I was not given HRT. After reading several posts on this site and hearing how some women have improved their BMD with HRT, I asked my new OB/GYN if I could try HRT and she said yes. Note, I’m 53 now so I’m not really sure if I will see the same results as other women on HRT but I think I would rather try HRT than stick with osteo-meds, which can have some pretty horrible long term side effects.
Oh my goodness that is so young! I would have thought HRT is a must for you! I went through the menopause at 52 and I totally agree with you. I think HRT is the best solution and I think it is a far better option for increasing bone density. I don’t know if I mentioned this but Dr Nick has asked me to ask my GP if I can be tested for SIBO (small intestine bacterial overgrowth) I had never heard of it but apparently if left untreated it can stop proper calcium absorption therefore leading to osteoporosis!!! I wonder how many of us have been diagnosed with OP and are totally unaware that this could be a factor!!!
I have read about SIBO and will add that to the list of things that need to be checked. In June 2022, I started working on getting my referral for my next DEXA, which I’ve been eligible for since July 2022 but wanted to wait until November 2022 to have because mid-November will be 1 yr since my 1st zoledronic acid infusion, and 4 months later I’m still trying to find an imaging center w/ TBS capabilities. Unfortunately, it seems that no matter how minor some medical things are, my doctors turn everything into an ordeal. Ex. I just went to see my GP on October 10. During the appt we discussed the following, she would order bloodwork to check my cholesterol, A1C, and B12 and that she would NOT check my thyroid since my endocrinologist does that bloodwork 2-3 times a year. Additionally, she would give me a handwritten prescription for a med that I use only as needed (usually only need it maybe 1 or 2 times a yr). When I left her office, I realized she had not given me the handwritten prescription so I thought I would just pick it up when I went back for my bloodwork. Before I returned for my bloodwork, I got a call from my pharmacy because my doctor’s office had called in the prescription and it was ready for pick-up. I had to call the pharmacy and explain that the prescription was not supposed to have been called in and that I would not be picking it up. After getting my bloodwork done, I received a msg with my cholesterol, A1C, and thyroid results and stating that I still needed to have my B12 checked. So they checked my thyroid even though I specifically told my doctor not to do so. I just had my thyroid bloodwork done on 8-29-22 and everything was fine. I had to contact their office and schedule a time to come back in to have my B12 checked. Ugh. This is how almost every doctor encounter I have goes and frankly, it’s exhausting 😂
If you haven’t had your bone markers tested (my endocrinologist failed to do this) you should do so before starting HRT. Then after being on HRT for a few months retest to see if HRT is having the desired effect on bone turnover.
I started menopause at 42. On HRT for 11 years. Thanks for lots of interesting things to think about as well as confirming my thoughts that climbing up to top cupboards etc which I did last week is not such a great idea.
Oh my goodness that is so early! Have you had a Dexa scan? Would be interesting to see how your bones are after taking HRT. Am not sure how I feel about starting it as my mum had womb cancer and 3 of my aunts have had breast cancer
I had some sort of x-ray thing on my knees and something on my hip when in my fifties which implied my bones were okay for my age and just keep being told it’s ‘wear and tear’ but I’ve been having bad knees from my teens. Due to thyroid tests saying I’m overtreated when actually I wasn’t converting T4 to T3 I was constantly being warned I’d get osteoporosis (which my aunts had and my sister had new knees 15 years ago)
I don’t understand my condition with good and bad days. Eg I walked, with painkillers, about 5 miles yesterday no problem then got home had a rest and was waddling like a penguin in pain the rest of the day!
I’ve never broken anything even when slipping and bashing my arm on rocks so don’t know what’s going on? I feel it’s more ligaments/synovial fluid rather than bones but don’t really know.
I couldn’t have functioned without HRT as was just sooooo tired, periods lasting weeks and had just started a degree. Within days I was back to normal.
Maybe you should check the statistics regarding HRT as it often increases the likelihood of these cancers by a really tiny proportion. We all have to weigh up pros and cons and women especially are often presented with the cons and worst case scenarios.
Oh gosh that is a bit of a puzzle! How strange that you can be fine some days and not others. Glad to hear that HRT helped you so much. Have you tried using supports for your knees?
supports helped a bit and walking poles but haven’t needed for years best thing was I lost some weight and sorted my gastric reflux so no more Omeprazole! ( which was also stopping my Thyroxine converting!). I could do with losing a bit more weight as I know it makes such a difference but it’s a vicious cycle when exercise causes pain!
Hi. Nick Birch seems very impressive. Whereabouts in the country do you live? I can only have a dexa reading taken from my wrist as my spine has too much cement and both hips are now replaced. In answer to your question about Alendronic acid I took it for a similar time as you. I only came off it as my cousin had just died from oesophageal cancer and I got frightened. I was on hrt when I got my first breaks and was diagnosed with OP then. I have now had a few of the drugs, none of which helped, especially Prolia as you have probably seen! I am currently on teriparatide but I should have had it 7 years ago as I now have eleven fractures treated with vertobroplasties and it’s only to strengthen the spine. I have sustained fractures on all the drugs I have taken. I would certainly like to have your Nick Birch’s opinion
Anyway I m really pleased you’re doing so well after an awful fall Best wishes to you. Pam
has your Dr checked your bloods for parathyroid gland faults? This is NOT the same as the thyroid, but a very common cause of bone loss/fractures and very many other body symptoms. Can only be checked by samples for calcium, vit d and parathyroid all from same blood draw to accurately assess their relationships which is what will lead to a diagnosis, not necessarily the levels, of this easily treated disease.
Am so sorry to hear about all your fractures and the terrible time you have had. I live near Aberdeen. I have been reading posts on this site for quite some time but not joining in. It seems to me that there is not one size fits all for osteoporosis. So many people suffer and don’t get the help they desperately need. Hope you don’t suffer too much?
I consulted Nick Birch last week and the experience was a revelation. My scoliosis was ignored at my DEXA scan and so readings were completely inaccurate. The REMS scan showed that my osteoporosis is milder than I was led to believe and my bone fragility is not worryingly high. Nick confirmed that I should carry on with the supplements I take together with my exercise regime and use of vibration plates. I am also now on HRT which should help. In my case, I previously had lymphoma of the stomach, the Alendronic Acid I was told by 4 various medical people would have been completely inappropriate. Thank fully I never took it thanks to so many adverse and worrying reports on this friendly and informative forum. Whilst I feel badly let down by the NHS I am now in safe hands and would encourage anyone who possibly can to travel to consult Nick Birch.
Hi, i have been just reading your post about REM scans. Looked it up and Dr Birch clinic is not too far from me. I am 72 and had a hysterectomy at 34.. very early. I was put on HRT immediately but after taking it for 25 years was advised to stop it. I have had a few broken or chipped bones starting with patella at 10 years old.. heavy fall.. broken ankle and fibula, chipped ankle (other one) chipped wrist…because my patella and ankle break my leg is a funny shape. So 5 years ago had hip replaced, due to arthritis. So i am deemed to be at high risk of osteoporosis. . I have been fighting not to take the alendronic acid and similar meds with my rheumatologist. I waited 9months for another DEXA scan , but only had it after next app. With rheumatologist chased it up.
I am now waiting to see the results of this.
I upped my supplements 2years ago to help with bone strength which included calcium magnessium D3 , K2 , also taking collagen, and other supplements to help with maintaining quality of life. I increased exercises regimes. Walking more, weights, resistance bands etc etc.
The rheumatologist will still probably recommend the meds. So might be better seeing what he says and then seeing Dr nick Birch.. or would you think i should have them REM first?? It is quite an expense in present climate… any thoughts thanks
Am so sorry to hear about your troubles. You were so young when you went through menopause! That must have been awful for you. Have you had a Dexa Scan prior to the one you are waiting for the results of? You could always seek Dr. Birch’s opinion providing you can afford to do so. This might help you decide- If I hadn’t chosen to visit him last week. I would still be taking Raloxefine which wouldn’t be doing me much good. I would still be feeling that I had to watch what I was doing in case I had another fracture and I now realise that although I have Osteoporosis that I have very strong bones and that’s what matters. Osteoporosis is a scary word but it doesn’t need to be a scary condition. Good luck x
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