Can you really reverse osteoporosis n... - Osteoporosis Support

Osteoporosis Support

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Can you really reverse osteoporosis naturally?

FearFracture profile image
47 Replies

I was diagnosed with osteoporosis at age 50. In hindsight, it should have been caught much earlier. Due to the horrible US healthcare system and several doctors who simply failed to steer me in the right direction, it was missed. I am looking for success stories from people who have actually been able to reverse their osteoporosis without meds. I took alendronate for 1.5 yrs but due to gastrointestinal tract issues, I stopped taking it after my 2nd bone density test. In November, I received my 1st zoledronic acid infusion. I haven’t had any adverse reactions, thank goodness, but you can only take zoledronic acid for a few years and I would much rather try to build my bones on my own. If you’ve been successful at reversing your Osteoporosis without meds, I would appreciate learning how you did it. Thank you.

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Met00 profile image
Met00

I can't say I've reversed osteoporosis by natural means (yet), but I'm replying in order to bump this post up so others see it. I have slowed my bone loss and hope that doing more of the right things (especially exercise) will improve my bone density over the next few years. There is evidence (especially from Australia) that high impact exercise improves bone density and when done under professional supervision can be safe even for those who've fractured. Exercise such as jogging, jumping, skipping, hopping and dancing are all good, as well as using weights and exercise bands. But of course not everyone is able to exercise in this way and I know from my own experience that life often gets in the way of keeping it up on a regular basis. it's also important to have a healthy diet and many consider that taking a number of bone-friendly supplements is also important.

FearFracture profile image
FearFracture in reply toMet00

Thanks for replying. When you say you have "slowed your bone loss" do you mean that your DEXA scans are improving or just not declining? And did you achieve this just by "doing more of the right things (especially exercise)" or did you also decide to take meds or get an infusion?

I took alendronate for approximately 1.5 yrs but it caused digestive issues so I stopped taking it in July 2021 and then in November, I got my 1st zoledronic acid infusion. I'm still not sure I did the right thing but because I was diagnosed with osteoporsis literally at the beginning of the pandemic and life just got a bit crazy, I followed my doctor's advice. I know 2 females, one 79 the other 80, who have taken alendronate without any issues, but they were both diagnosed with osteoporosis in their 70s. I was diagnosed at age 50 so yikes!

My back T-scores are not good -3.9 on my first DEXA scan and -3.7 after taking alendronate for 1.5 years. They improved but I have a long way to go.

I recently started doing a lot of research and I have in the last 2 weeks, started eating 5 prunes a day (might bump it up to 10) because there is research showing that some people reversed osteoporosis by eating prunes.

I've also read that 1 rep max weight lifting is good for osteoporosis, so I am in the process of looking into that. I don't have any osteoporosis related fractures but I also don't want to fracture anything by overdoing the exercises so I am going waiting for my physical therapist to get back from her holiday vacation before gettting started.

If you have any tips, etc. to share, please do. My goal is to do everything possible to try to increase my bone density on my own so I can potentially not have to take meds.

Met00 profile image
Met00 in reply toFearFracture

I slowed down my bone loss. It's normal to lose on average 1% bone density per year from around age 40, with a faster rate of loss around the menopause. I was diagnosed aged 58, with a hip t-score of -2.3 and spine -3.2. In nearly 4 years between scans I lost about 2% density on my hip, which is half the expected rate of loss. My spine did appear to worsen at the expected rate, but since then I've had a REMS scan, rather than another DEXA scan, which showed my spine score to be very similar to my hip score (both - 2.6, 5 years after my original DEXA scan). I don't think my spine score had improved, simply that REMS is more reliable and there were errors with my DEXA spine measurements. Assuming my spine and hip were similar on first diagnosis, it should also have been -2-3, meaning at that point I was wrongly diagnosed with osteoporosis!

You mention your spine t-scores, but not your hip. Does that mean, like me, the DEXA scan gave much worse scores for your spine than your hip? Some experts believe they should be very similar, unless there's a specific underlying reason for a big difference (for example, using a wheelchair). REMS scans are approved in the US (unlike here in the UK), but aren't yet widely available. If there is a big difference in your scores, I would definitely recommend a REMS scan if you're able to access one.

Like you, I took AA initially, then switched to Risedronate because AA caused reflux. I stuck with Risedronate for a year, but eventually abandoned it because I was getting too many side effects, and have avoided meds since. I rely on diet, exercise and supplements, and have realised that I need to increase my exercise significantly if I want to stand any chance of improving my bone scores. That's easier said than done, as life has a habit of getting in the way! I try to walk most days, and 2-3 times a week exercise with weights and resistance bands. I also do daily heel drops, and try to remember to include some hopping and jumping. Dancing, skipping and jogging are also meant to be good.

I make sure I get plenty of calcium, magnesium and protein in my diet, and keep sugar and caffeine intake low. It's also recommended not to drink too much alcohol! I roughly follow a Mediterranean type diet, although I've never investigated it in great detail. I supplement with enough Vitamin D to keep my blood level over 100 nmol/litre (40 ng/ml), which means monitoring with blood tests 2-3 times a year, and also take Vitamin K2-MK7, boron, vitamin C, and zinc. Magnesium is also recommended, but so far I've been unable to find it in a form I can tolerate.

I hope the above info is useful, although as I said, I haven't even managed to stop my scores declining, just slowed them down. From what I've read, assuming you're getting the nutrients your bones need, the most important factor is to do lots of weight-bearing exercise, as high impact as possible, including weights and resistance bands. I do believe it's possible to reverse osteoporosis this way, but it does need huge commitment.

Kaarina profile image
Kaarina in reply toMet00

Hi Met, Have you tried magnesium spray? I found I could not tolerate any magnesium tablets but the spray is fine for me. Hope it is doing its good work! I use BetterYou magnesium spray.

Met00 profile image
Met00 in reply toKaarina

Yes, I tried the spray, and Epsom salts in the bath, but both of those made my already dry skin worse! The only thing so far that is manageable is a Body Rub, but it gives less magnesium and is still a little drying. I have ionic magnesium drops to try, started once but had to stop because I've had worsening IBS symptoms and couldn't tell whether the magnesium was contributing. I'm going to give it another go once my stomach has settled down again. I do get plenty of magnesium in my diet, including 2 squares of very dark chocolate, nuts and seeds daily.

Cwbsi profile image
Cwbsi in reply toMet00

Did you do REMS in the US? If yes, where?

Met00 profile image
Met00 in reply toCwbsi

Sorry, no, I live in the UK.

FearFracture profile image
FearFracture in reply toCwbsi

I'm in the US and I emailed the Echolight to see where there are REM scanners in the US. They recently opened/or announced they are opening a corporate office in Seattle so it's highly lightly that there will be more REM scanners around the US in the next few years.

They replied to my email inquiry with the following:

Thanks for your interest in Echolight. We do not yet have any systems in your state. I would recommend you contact Dr. Andy Bush centralcarolinaortho.com In North Carolina.

Mahler02 profile image
Mahler02 in reply toMet00

Thanks so much Met00 (and everyone here)!! First time posting.

I was just diagnosed with osteoporosis, with a discrepancy in T-score between hips (<2) and spine (3.3). My endocrinologist is doing some further blood work since my hips had negligible changes from a baseline DEXA 4 years ago. She will most likely recommend Fosamax. I walk several miles a day, but need to incorporate the weight-bearing exercises you mention. I am working on that and diet. I am not very surprised with the diagnosis, given my family history. Stress in my case may also play a role (experienced a catastrophic event three years).

HeronNS profile image
HeronNS in reply toMahler02

This may interest you.

healthunlocked.com/pmrgcauk...

Met00 profile image
Met00 in reply toMahler02

I personally would query the accuracy of those scores as there's a big difference between them. You would normally expect them to be broadly similar unless there's a specific reason (eg wheelchair use) why your spine would have deteriorated so much more than your hips. Do you have arthritis in your hips? That can give an apparently better reading.

Mahler02 profile image
Mahler02 in reply toMet00

Thanks Met00, yes I have some osteoarthritis in hips but was told it was very minor and they looked good, ahem, for my age.

FearFracture profile image
FearFracture in reply toMet00

Thanks for all the info. I'm really happy I found this online forum but I am also very upset about my osteporosis. I went through a really early menopause for unknown reasons. I was 32 when I had my last period and, in hindsight, I think my menopause started when I was in my mid to late 20s. I told every doctor I have been to between 2000 and 2019 the year I was diagnosed with osteoporosis about my early menopause, every single one, and not one of them said you need to get a bone scan. I'm angry about this and I feel cheated. I would have paid out of pocket for it if I had known to have one done. My first bone scan was at 50 and my numbers were as follows:

Femoral neck -3.0

Total femur: -3.2

Lumbar spine: -3.9

That DEXA scan was done in July of 2019, my numbers were sent to my primary care physician, a woman. She didn't bother to call me or say anything. When I went in to see her 5 months later, she said, oh you might want to do something about your osteoporosis.

I really hate taking meds so I told her I would prefer not to take meds if not necessary. She was acting as if my numbers weren't all that bad and just said I should discuss it with my endocrinologist. When I saw the endocrinologist a month later, he literally said, "Your bones are horrible" so I took his advice and started the alendronate.

When my digestive issues got worse and I mentioned to my endocrinologist that I was have a burning sensation in my back, which I had mentioned to at least 3 other doctors to no avail, my endocrinologist recommended that I start with a cardiologist to make sure that my heart was OK and then move on to a gastroenterologist.

The cardiologist I went to knew that I had osteoporosis and that I was taking alendronate and levothyroxine (I also have hashimoto's thyriod disease) and after a few tests he said your heart is in perfect shape, it might be heartburn and he put me on omeprazole, which I took from say August 2020 to September 2021.

I went to my gastroenterologist, this past summer, and she didn't even know that alendronate could cause digest tract issues so I ditched her. My new OB/GYN recommended that I stop taking alendronate and talk to my endocrinologist about other options so I took my last dose of alendronate the week of my 2nd DEXA scan and then stopped taking it.

I found a new gastroenterologist who told me to stop taking the omeprazole because it can interfere with bones. Seriously. The cardiologist, my original gastroenterologist, and my endocrinologist, never mentioned this to me.

My new gastroenterologist prescribed famotidine in place of omeprazole, which I have been taking for a few months.

My 2nd bone scan done in July 2021 showed the following:

left femoral neck: -3.2

total left femur: -2.9

"9.4% increase in mean bone mineral density of left total femur"

right femoral neck: -3.1

total right femur: -3.0

".2 increase in mean bone mineral density of right total femur"

Lumbar spine: -3.7 (3.8% increase)

I had my 1st zoledronic acid infusion on November 18 of this yr. and my endocrinologist never mentioned ONJ to me. I found out about this potential side effect purely by accident and it's really just luck that I'd had a complete dental exam (xrays) shortly before getting the infusion.

I called my endocrinologist 2 weeks ago, to find out how often I need to have my blood work done to check my kidneys (zoledronic acid, reclast can damage your kidneys) and his office never called me back. I called in again and the nurse said he still hadn't gotten back to her so scheduled an appt for after Christmas because I need a freaking answer.

I am seriously considering finding a new endocrinologist. The fact that he didn't think to say to me on DAY ONE that I saw him for my thyriod condition, "you're short, you're fair skinned, you're not heavy, your mother has osteoporosis" note my mother is also a patient of his so he knows my mother has osteoporosis "you have a thyroid condition, and you went through menopause over 15 years ago, you need a DEXA scan ASAP" makes me think he is a quack or just an irresponsible doctor who should have his license yanked. Sorry, I didn't mean to rant.

The only bone fracture I've ever had was in one of my toes. I was stepping down into a boat and my foot slipped and jammed up under one of the seats, so I can't say that it was really caused by osteoporosis. It was just a tiny chip and I had to let it heal on it's on; however, I did go to an orthopedics doctor to get it checked and he knew that I went through menopause at 32 and here I was at age 42 with a chipped bone, perfect opp to tell a patient you should get a DEXA scan, and he never mentioned it.

I had horrible periods when I was younger and now that I have been researching osteoporosis it seems that there might be a relationship between calcuim definiciency and pms. We always ate well balanced meals, but I'm 4'11" and in high school I never weighed more that 100 lbs so my calorie intake just isn't huge.

As I have focused more on how much calcium I am getting from my diet now, I have noticed just how hard it is to get the necessary amount of calcuim, and your body can only absorb so much at one time so it's pointless to drink 3 glasses of milk in one sitting because your body can't take in that much calcium at once.

I too watch my added sugar in take, I have almost completely eliminated carbonated beverages, and when/if I have one it's always a caffiene free beverage.

I do drink coffee every day but I switched to 1/2 caff several years ago and when I drink a cup it's about 2/3 coffee 1/3 milk. I'm trying to eliminate caffiene altogether and for the last few weeks my coffee is really 3/4 decaf.

Over the few weeks I've changed my calcium supplements. I was taking a 600 mg (with vitamin D) calcuim supple twice a day. Now I take Citracal petites and Viactiv soft chews, both contain vitamin D but the Viactiv also contains vitamin K.

One Citracal petite pill contains 200 mg calcium citrate so I take 3 of those a day. One Viactiv chew contains 650 mg of calcium so I take one of those per day but I cut it in half and take it at two different times for maximum potential absorption. Throughout the day, I take five separate doses of calcium supplements, or a total 1250* mg of calcium, to attempt to make sure my body is getting all the calcium it needs in addtion to the calcium I get from my diet.

After doing my own research, I found info about prunes being excellent in helping to fight osteoporosis. Not one doctor mentioned this to me. In the last 2 weeks, I've added 5 prunes a day and intend to bump it up to 10. Also found info showing that almonds can be particularly good for bone health so I have added almonds to my diet too. The research I found suggests that almonds interfere with osteoclasts.

I also read that grapes might be another excellent fruit to eat for bone health and I intend to add more in but I haven't been able to find any that look good enough to buy so I haven't started eating more grapes yet.

I rarely drink alcohol, might have had 2 drinks in all of 2021, and I don't smoke and I've never done any recreational drugs.

Regarding exercising for bone health, I've found info pointing to the need for lifting much heavier weights to build bones. All any doctor has ever said to me is to do weight bearing exercise, walking, jogging, etc. and to get a few light hand weights and do a few reps several times a week. I think they have it wrong, meaning what their saying can help but it'd not really enough to reverse osteoporosis and I don't even think it's the best way to build bones.

From what I've found recently, the best way to build bone is 1 rep max weight lighting. Unfortunately, it seems a bit risky if one has osteoporosis so I went to see a physical therapist and I am going back tomorrow to start getting some pointers on what I should and shouldn't do and although I seriously do not want to I'm pretty sure after January 1, I'm going to join a gym and start a lifting heavier weights. The good thing about 1 rep max is that other than a little warm up it really is just 1 rep.

I walk every morning, have done this for decades, it's been my main form of exercise, but obvisously it's just not enough. I've seen a few people post about weighted vests and I might consider getting one but I am going to see what the physical therapist thinks about it first.

Additionally, I read on-line that twice a day you should stomp each foot four times, as if you are crushing a can with your foot. They said this builds the hip bone. So I do this twice a day and I have added in pushup and squats and practicing balancing on 1 foot for up to 1 minute.

Well, that's my saga. LOL. If you haven't incorporated prunes into your diet, definitely look up prunes and osteoporosis. That and the 1 rep max exercising are the two most promising things that I have been able to find.

=======================

*Made a calculation error, thanks Met00 for pointing this out, my math has now been corrected. I currently take 1,250 mg of calcium per day in supplement form.

Met00 profile image
Met00 in reply toFearFracture

So sorry you've been so badly let down, FearFracture. I agree with you that the only fracture you've had doesn't sound like a fragility fracture. You've obviously done a lot of research, and I wish you well with finding your way forward with this. I'm hoping you've done your sums wrong with the calcium, as 12050mg would be a huge amount to take. From the supplements you mention, I wonder if you mean you're taking 1250mg from supplements, plus whatever you get in your diet? In the UK we're told that we only need 700mg calcium a day (the World Health Organisation says 500mg), so that's still quite a lot of supplemental calcium you're taking, given that you're almost certainly getting a reasonable amount from diet too. We're also advised to get it from diet if possible and only supplement to make up any shortfall. I think with calcium it's a case of more not necessarily being better, and the supplemental form does risk other health problems (for example kidney stones). It's also worth bearing in mind that a good blood level of Vitamin D will mean that you absorb more calcium, so if you're optimising your Vitamin D level you need to keep an eye on your blood calcium levels. Vitamin K2 (NB it needs to be labelled K2, not K or K1) will help send the calcium to your bones.

There's been a lot written about prunes and certainly seems to be some evidence that they're good for our bones. However, don't forget that eating lots of prunes could raise your blood sugar level, so again there needs to be some caution over how many you eat, particularly if you're eating other fruit, drinking fruit juice, and/or getting plenty of sugar from other sources.

You might also be interested to know that there are some experts who say that DEXA scans are inaccurate for petite people, and that an adjustment to the scores needs to be made to account for this. I don't know the details but if you asked the question in a separate post, I'm sure someone could point you to the relevant information.

Finally, can I ask whether you've ever been checked for other possible underlying causes of your osteoporosis? Everyone should have blood tests for Vitamin D, calcium, parathyroid (those three all at the same time as they interact), thyroid, coeliac disease and any other possible absorbency issues..

Hane21 profile image
Hane21 in reply toMet00

I am glad to have this support group. I am 55 and decided to not take medicines, after many years of alendronate on and off. Which I think, the doctor should have said exercise and lift weights, when I still had my period. Now, I decided to exercise. Will see what happens. I wonder if you can increase 1% for each change you do or you only increase 1% compounding all your changes: prunes, lifting weights, weight bearing of more than 3.1 m/h (super important) and so on... What have you seen? Thank you for sharing,

Met00 profile image
Met00 in reply toHane21

As we're all different and there are so many possible underlying causes for our osteoporosis, I don't think it's possible to generalise about how much difference improvements to our diet and exercise will make to each of us. It's really important to identify any underlying causes if at all possible - for example, if you have hyperparathyroidism, not enough calcium will reach your bones so until that's corrected it may not be possible to improve your bone health. I haven't actually seen an improvement in my bone density, only a slowing of bone loss, but am hoping that by increasing high impact exercise I may actually be able to at least stop the loss. It's also not possible to know exactly what's a normal rate of loss for an individual, as 1% per year is an average, and in the 5 years (sometimes longer) around/post menopause bone loss can be 2% per year or more. I had my menopause at 48, so by the time I was diagnosed 10 years later, my bone loss would have slowed back down to around 1% per year, but at age 55, if you've had your menopause relatively recently, you could still be in that post-menopause stage where your bone loss is faster. Sorry I can't give you any answers, except to say that the more you do, the more likely you are to help your bones.

FearFracture profile image
FearFracture in reply toHane21

I have that same exact question. Do all the small changes add up to a bigger percentage increase. I haven't been able to really find an answer. I also want to know what is the maximum increase in bone density that has ever been seen in 1 year, meaning is it possible to have a 20, 30, or 40% increase in your DEXA scan in one year. I haven't been able to find an answer to that question either. I've seen people post gains ranging from up to 12% between DEXA scans, which are usually done every two years. I would be happy with any increase but I work better when I know what is possible. My gut feeling is that all the things we do for our bones have a cummulative effect but it's a do all you can and wait and see kind of game, and I don't like that we have no way of knowing the effects of all of our hard work until we have another DEXA scan. I'm in the U.S., and here if you are being treated for osteoporosis you can get approval from your insurance to have annual DEXA scans, rather than having to wait every 2 years.

Also, that prune study has been around for a while and not ONE doctor bother to mention it ever. I was also told walking and lifting small hand weights works. WRONG. Those might slow bone loss but they are not enough to prevent osteopenia/osteoporosis.

FearFracture profile image
FearFracture in reply toFearFracture

Adding to my previous post because yesterday I learned something that my quack endocrinologist should have known/told me. It’s not a wait and see kind of game as I mentioned above. A dr. or osteoporosis expert posted a list of bone markers and what they show/tell you. Unfortunately, my irresponsible endocrinologist did not take one single base-line bone marker measure before pulling out the prescription pad. I know many of you have posted about bone marker test and I was/am planning on asking my new endocrinologist (as soon as I can get an appt) about these tests, but the osteo-specialist who posted the list gave detailed explanation of what the tests show and when they should be done. I’m so furious w/ my current endocrinologist, I just can’t leave him for good until I can finally secure an appt with someone new.

If there is anyone on this forum who has had a zoledronic acid (reclast) infusion more than one year/one dexa ago, please respond. I would love to ask you a few specific questions. Thanks.

FearFracture profile image
FearFracture in reply toMet00

Thanks, yes, I did calculate incorrectly. The total calcium I am getting from supplements is 1250mg and I do try to get most of my calcium from my diet. I eat a pretty healthy diet but since having been diagnosed with osteoporosis, I have paid more attention to exactly how much calcium I am getting through my diet and actually it's not that easy to get the right amount. I don't eat a lot so I'm constantly trying to add in a little here and there. I'm 4'11" (no height loss, that's just how tall I am--LOL) and right now I weigh 111 lbs (I put on approximately 8 lbs during the pandemic, but my OB/GYN said that's good because of the osteoporosis) so based on height and weight I just can't eat a ton. Note, I definitely do NOT follow the "typical American diet" which is a lot of fast food, way too much added sugar, and tons of processed foods.

During my search for info on osteoporosis, I did discover that the US, the UK and France all recommend different amounts of vitamins and minerals--which just adds another layer of confusion to the matter. Who's right? In the US, they say women over 50 need 1,200 mg per day, I'm not really worried about the extra 50 mg -- I have only been taking my calcium supplements as listed above for approximately 2 weeks (previously I was getting 1200 mg per day). I am trying to work out a system that works best for me. The Viactiv supplement contains a little sugar and because I really don't want added sugar in my supplements it's probably going to be replaced with something else eventually. Additionally, my endocrinologist is aware of the amount of calcium I take. He recommended the 1,200 mg per day.

When I first started seeing my endocrinologist my Vitamin D levels were low, not below the bottom range number but just a little above the bottom range. Under my doctors advice, I added vitamin D supplements. Additionally, in the fall of 2019, I stopped wearing sunscreen (I still avoid peak sun hours). I have very fair skin and for years I wasn't leaving the house unless I was totally coated in sunscreen. Then I read a study that said the chemicals in sunscreen get into the bloodstream so I decided the benefits of sunscreen don't outweigh the potential harmful effects. Note, if I were going to the beach, I would were sunscreen, I just don't slather it on every day, as I had been.

My vitamin D levels have come up, which is awesome but they are still below the 1/2 way mark of the healthy range. An orthopedics doctor recently told me I should try to get my vitamin D levels up around the higher end of the healthy range and thanks for pointing out the K2 info. After posting on this website last night, I was doing a little more research and realized that my Viactiv supplements, which contains vitamin D and K, doesn't list K2. I looked up vitamin K and it seems there is MK7 and MK4 and so I am going to a little more research to figure out what I need to do there so I can get the right thing added to my diet. Sounds like if I do add more K2 that I might boost my vitamin D levels even higher.

Regarding the prunes and sugar, I don't drink a lot of fruit juice. I have added about a 1/2 a cup of OJ because I, I take metamucil for the obvious reasons and the OJ helps me get it down. The OJ I drink does have added calcium and vitamin D. Overall, I'm not too worried about natural sugars. I try to avoid added sugars (the viactiv supplement contains 1 gram of added sugar and that is one reason why I am looking for something else to take, I only bought the viactiv because it included vitamin K and it could be cut in half easily) but like everyone else, occassionally, I eat something sweet, but again I try not to over do it.

Regarding "You might also be interested to know that there are some experts who say that DEXA scans are inaccurate for petite people, and that an adjustment to the scores needs to be made to account for this." I have wondered about this and I will definitely look for more info.

My "health journey" is a bit odd. I went through premature menopause for undiagnosed reasons and my last period was the Fall of 2001, when I was 32. I tried to get help or answers but due to a lot of life changes and the US's crappy healthcare system--UGH! Then in 2016 I started gaining weight for no reason. I started looking up info and stumbled across info stating that Celiac (coeliac) can cause premature menopause. I did research on celiac and felt like I had a good number of the symptoms so I cut most gluten out, no bread, no pasta, etc. but I didn't over worry about trace amounts. Found a doctor who did a blood test for celiac which came back negative but everything I read said that since I wasn't eating gluten the blood test wouldn't give an accurate result. Was diagnosed with Hashimoto's Thyroiditis in 2016, for which I currently take 75 mcg of levothyroxine daily.

After being diagnosed with osteoporosis in 2019, not knowing 100% about the celiac issue started bothering me again. This year, 2021, I started doing more research on celiac and found that there are a couple of genes linked to celiac so I had a dna test and found that I have one of the genes for celiac and because I had one of the genes, went through early menopause, and now have osteoporosis, my new gastroenterologist did a biopsy of my small intestine and I do not have celiac. There is no official test that I am aware of for NCGS (non-celiac gluten sensitivity) but I do believe I have it (NCGS) and I do continute to try to avoid gluten but I don't worry about eating a little now and then. Over the Christmas holidays, I will have a little gluten and not stress about it.

The parathyroid glands are what I intend to ask my endocrinologist about when I see him next week. While doing all this osteoporosis research, I discovered just how important calcium is to the body and what exactly the parathyroid glands are. My calcium level seems to always be within the healthy range (I've gone back through about a 1/2 dozen blood work-ups, the earlist is from 2000) and my calcuim is always within the correct range. What I don't understand about PTH (parathyroid hormone) is if normal range calcium levels mean all is well. If I am understanding PTH correctly, if all four parathyroid glands are working properly, if you don't have enough calcium in your blood, your parathyroid gland secretes PTH to get calcuim from your bones to make sure the calcium in your blood stays within the correct level. So my question sort of becomes, if you are getting the correct amount of calcium in your diet/supplements, does that mean that your body will show no PTH present? Additionally, my endocrinologist stopped "feeling" my neck to check my thyriod and parathyroid glands, I'm guessing due to covid, but when I see him next week, I'm going to ask him to do it. I haven't noticed any weird lumps but I don't know what I am really looking for.

Met00 profile image
Met00 in reply toFearFracture

I'm not medically qualified, so don't know the answers to all of this. Parathyroid, calcium and Vitamin D all work together - Vitamin D helps absorb calcium, so if your Vitamin D blood level is low, you may not absorb enough calcium, while if it's too high you may absorb too much. Your parathyroid glands regulate the amount of calcium in your blood, so if they're not working properly you can end up with too much calcium in your blood. There's a normal range for both calcium and parathyroid hormone as well as Vitamin D and your endocrinologist should be able to explain exactly how this works (or you could try googling it!). I don't think you'll ever have no PTH, and hypoparathyroidism (low parathyroid) is a different condition. I've read that it's possible to have hyperparathyroidism with normal calcium but raised parathyroid levels.

It is confusing that different countries recommend different amounts of calcium. However, as far as I'm aware, the recommendation is for total calcium intake, not just supplements. I've read of people ending up in hospital seriously ill because they've taken 1000mg calcium daily on top of getting plenty in their diet, although I'm sure this is rare. This US site says the maximum safe intake is 2500mg per day up to age 50 and 2000mg from age 51: mayoclinic.org/healthy-life....

Prunes are high in sugar, so if you're drinking any kind of fruit juice, plus other fruit (you mentioned adding in grapes), you need to be aware of the total fruit sugar you may be consuming. One glass of fruit juice counts as one serving of fruit, and 3-4 prunes counts as another serving. 2-4 servings of fruit per day is considered the ideal amount. If you eat 10-12 prunes that could count as 3 servings, plus your fruit juice would make 4 servings, before you add in grapes or any other fruit.

Osteoequestrian profile image
Osteoequestrian in reply toFearFracture

I was wondering how you got the DNA testing done to test for celiac?

FearFracture profile image
FearFracture in reply toOsteoequestrian

Short answer, my gastroenterologist ordered the test at my request.

I went through a very early menopause—think I had my last period about 4 months before my 33 b-day. Was never given a reason why this happened.

About 16 yrs later I was having some strange health issues, tingling, skin issues, started searching on the internet and discovered that Celiac can cause premature menopause. I cut gluten from my diet and several issues I’d been experiencing improved.

In 2017, was diagnosed with Hashimoto’s thyroiditis (hypothyroidism) and put on levothyroxine—currently take 75 mcg daily. Thought maybe my issues weren’t related to gluten, maybe it was just my under-active thyroid causing the problems. Resumed eating gluten and after a few months my weird symptoms returned, so again I stopped eating gluten. There is some kind of link between thyroid issues and Celiac Disease.

When I told my ”old” gastrointestinal all of this she did a blood test to see if I had a gluten sensitivity. I told her I was avoiding gluten but she ran the test away. If you aren’t eating gluten the test won’t be accurate. That was in 2017.

In 2019, I was diagnosed w/ osteoporosis. I told my GP that I preferred natural remedies to taking osteoporosis-meds. She recommended that I talk to my endocrinologist.

My endocrinologist told me that my bones were “horrible” and pretty much said osteo-meds were my only option and he prescribed alendronate, which I took for 1.5 years (from Jan 2020 to July 2021). I stopped taking alendronate because it was causing digestive tract issue.

I’d been sent to a cardiologist in July 2020 because I was having a burning sensation in the middle of my back. He ran a bunch of tests, said my heart was fine, and said that it was probably just heartburn, and although I specifically told him I had osteoporosis and was taking alendronate, he prescribed omeprazole, which I took until September 2021, when my new gastroenterologist told me that omeprazole is bad for your bones and switched me to famotidine.

The Celiac thing was always in the back of my mind. Since I knew that there was a good chance that the blood test done in 2017 was inaccurate because I hadn’t been eating gluten and I felt like I didn’t have an answer. Additionally, although I was avoiding gluten, I wasn’t avoid “small” amounts. For instance, I wouldn’t eat bread or pizza or pasta, but I would occasionally eat canned soups which often contain some wheat/gluten.

I’m not really sure what inspired me to do this but in the spring of 2021 when I went to my “old” gastroenterologist about my heartburn I brought up the Celiac thing again and again she wanted to run the same blood test even though I told her I was avoiding gluten. Note, she was also unaware that alendronate can cause digestive tract issues, so basically she is an incompetent gastroenterologist—I later learned from my OB/GYN that digestive tract issues are pretty common when taking alendronate.

I started doing research again, and I discovered via an internet search that there are specific genes linked to Celiac. Having a genetic test would allow me to get tested without having to add gluten back into my diet.

I called my “old” gastroenterologist and requested the genetic testing for Celiac. I got a call back saying she’d approved this and I went in for the tests and when I got there I asked the phlebotomist what tests were being done, specifically was it genetic testing for Celiac. The phlebotomist couldn’t answer my question—didn’t know what she was drawing blood for. I asked for a copy of the blood work request and told them I would have to come back later after I confirmed what tests were being done. As I suspected, none of the tests were genetic tests.

I found a new gastroenterologist. 1st visit was w/ his PA. Told her my situation, she ordered the test through Prometheus. I scheduled an appt last fall and someone from the company came to my home to draw blood. A few weeks later I had my results. I tested positive for one of the 2 genes associated w/ Celiac. Based on that my new gastroenterologist scheduled an endoscopy (biopsy of small intestines), which is the gold standard test for Celiac. To have this done I had to do a gluten challenge—eat gluten for a few months. Good news is I don’t have Celiac, my villi were fine. Bad news is I am NCGS (non-Celiac Gluten Sensitive) so I still have to avoid gluten. Also because I have one of the two genes, I could develop Celiac later on, which is another good reason to avoid gluten.

These are the things that made my new gastroenterologist order the genetic test for Celiac.

- definite gluten sensitivity of some type

- premature menopause

- hypothyroidism

- early onset osteoporosis

Some things that I noticed when I did the gluten challenge last summer, I had more headaches/migraines while eating gluten and I cried more frequently.

In 2016, my left knee was killing me. My doctor did x-rays and I saw a rheumatologist and they could find anything. After I removed gluten from my diet the pain eventually went away. Also, I bit my nails into my late 40s and then one day I just stopped. I know have long nails and I honestly think quitting gluten allowed me to stop biting my nails. It’s known that gluten can cause anxiety or nervous behaviors.

Also, I recently learned about the Wheat Zoomer test. If you think you may have issues with gluten you might want to discuss that test with your doctor.

Kitchenbuddy profile image
Kitchenbuddy in reply toMet00

Good point about the sugar and too many prunes might not be good if a person has IBS. My orthopedic doctor says the D E X A is not a good indicator of bone health. I recently had shoulder surgery to remove a bone spur and she said there is no deterioration in my shoulder joint so I was relieved to hear that.

Kitchenbuddy profile image
Kitchenbuddy in reply toFearFracture

I wonder if a good brand of grape juice would help as well as grapes? Thanks for your informative article. I am an Occupational therapist assistant with a BS in health science and I don't trust the osteoporosis meds. I have a -3.5 T score on the D E X A scan and am trying to maintain the health of my bones. I have a difficult time with nutrition because of digestive issues and take supplements to help stop bone deterioration. I don't wnt to make issues worse with meds. Stay healthy and keep informed this is our best action.

FearFracture profile image
FearFracture in reply toKitchenbuddy

I recently discovered info on Low Intensity Vibration therapy to treat bone loss. There is a good amount of research, partially funded by NASA, and it sounds very promising with no nasty side effects. melioguide.com/osteoporosis... You can read about it or watch the videos that are imbedded on the website.

violetangel1111 profile image
violetangel1111 in reply toFearFracture

FearFracture, I also have both osteoporosis and hashimoto’s. Does your endocrinologist say that you need to keep your TSH within a very specific range due to the osteoporosis? If so, could you please share what that is? Many thanks!

FearFracture profile image
FearFracture in reply tovioletangel1111

I really don’t know. I take 75 mcg of levothyroxine daily and earlier this year when I asked my endocrinologist if maybe we could lower my levothyroxine dose to help my bones he answered NO!

Had my last thyroid bloodwork done at the end of August 2022, and below, are my numbers:

Thyroxine (T4) Free, Direct

normal range .82 to 1.77 ng/dL

My results: 1.43

————

TSH

normal range .45 to 4.5 uIU/mL

My results: 1.130

————

Vitamin D, 25-Hydroxy

normal range 30 to 100 ng/mL

My results: 69

————

Triiodothyronine (T3)

normal range 71 — 180 ng/dL

My results: 88

————

Triiodothyronine (T3) Free

normal range 2 — 4.4 pg/mL

Me results: 2.5

————————————————————

I hate to admit this but I don’t fully understand what’s going on with my thyroid or if my meds are right. In 2016, I started putting on weight and nothing I did, diet, exercise, helped. Also my face was very puffy, which is a classic hypothyroidism symptom, and 4 members of my immediate family had all previously been diagnosed with Hashimoto’s. I went to my primary care physician and I think my TSH was around the high end of the “acceptable” range. I was put on levothyroxine and referred to my endocrinologist and he explained that many/most doctors agree that the high end normal range is really not healthy and should be lowered. Anyway, he adjusted my levothyroxine and I’ve been taking 75 mcg daily for 5ish years.

I was diagnosed with osteoporosis in 2019, and since I already had an endocrinologist, naturally he is who I went to for “treatment”. Unfortunately, after following his advice, I started doing my own research and have come to believe that he didn’t do several things he should have done before slapping me on osteo-meds so I decided to find a new doctor. Tomorrow I have my 1st appointment and I’m very excited. If my new doctor says anything to me about what level (range) she wants to keep my TSH at, I will let you know.

violetangel1111 profile image
violetangel1111 in reply toFearFracture

My latest TSH is: 1.95 mIntlUnits/L

Reference Range: 0.27 mIntlUnits/L - 4.20 mIntlUnits/

My endo says my TSH should be at a "4" because I have osteoporosis and wants to decrease my meds.

Best of luck at your appointment tomorrow! Please let me know how it goes.

FearFracture profile image
FearFracture in reply toMet00

My DEXA scans are who knows.

Since my post, I learned that I was never given my full DEXA reports. I also learned that my endocrinologist never received my full DEXA reports. All he had was the summaries, which is what I was given.

I have an excuse, I'm not a doctor, I thought the summary was the entire report. It doesn't say SUMMARY on the top or anything like that. My endocrinologist on the other hand, is just irresponsible, he should have told me that he didn't have the full report and he should have requested the full report from the facility that did the scans. Yes, I am severely unhappy with my endocrinologist.

I'm trying to get the full reports now but it's not as easy as it one would think or as easy as it should be.

My summary DEXAs show the following:

July 2019

Femoral Neck .6 t-score -3.0

Total Femur .608 t-score -3.2

Lumbar Spine 1174 t-score -3.9

(that 1174 is not a typo on my part, that is what the summary shows)

FRAX score 10 yr risk

Major osteoporotic fracture 10.2%

Hip fracture 4.5%

July 2021

Lumbar spine .741 g/cm2 t-score -3.7 (3.8% increase)

Left femoral neck .590 g/cm2 t-score -3.2

Total left femur .640 g/cm2 t-score -2.9

Since 2019, 9.4% increase in BMD of total left femur

Right femoral neck .612 g/cm2 t-score -3.1

Total right femur .633 g/cm2 t-score -3.0

Since 2019, .2% increase in BMD of total right femur

FRAX score 10 yr risk

Major osteoporotic fracture 20.1%

Hip fracture 8.2%

Where do I begin with what is wrong/confusing/stupid?

All of my scores improved between 2019 and 2021. The only "negative" change was that I aged by 2 years, but per the summaries, my FRAX risk doubled. That just doesn't make sense.

Also, on my first DEXA summary they lumped both of my hips into 1 t-score. Who knows what that means.

What I am actually trying to get clarification on right now is if DEXAs are frequently wrong for smaller people. I'm 4'11" and that is my maximum height meaning I don't have any height loss :-)

Dr. Lani Simpson (lanisimpson.com/) and Dr. Brown (BetterBones.com) both talk about how DEXA scans can under report smaller ppl's actual BMDs. Also, one person on HealthUnlocked posted that she is petite and when she used Dr. Ott's BMAD calculator that her t-scores improved by 1 full standard deviation, which is HUGE.

I did a little searching and found Dr. Ott's BMAD calculator at courses.washington.edu/bone... Unfortunately, since I haven't, as of yet, been able to get a copy of my full BMD reports, I can't enter my numbers in the BMAD calculator to see what happens with my numbers.

Given the info I have, I would love your opinion on the gap between my lumbar and hip numbers. Do you think that is a big gap in BMD or does it sound about right? I have read that post-menopausal woman lose more density in their spines than in their hips.

On another note, I have joined a gym and I am working to safely increase what I lift. I go a few times a week and make sure that I give my muscles/bones a chance to rest between visits. I also walk take 2, 20+ minutes walks a day. I used to take one long walk but broke it in to two shorter walks to make sure I am keeping my pace up. I also working on my diet.

I have always eaten a relatively healthy diet, but I only recently learned about vitamin K2--my endocrinologist never bothered to mention it to me--and so my diet to is evolving. I'm trying to up my protein intake. Protein is needed for your bones and if you increase how much you lift, you need more protein. Fortunately, dairy generally has a good amount of both protein and calcium.

Met00 profile image
Met00 in reply toFearFracture

I really wouldn't trust those scores. How could your total left femur score improve by 9.4% in the space of two years, and why would that improve so much, yet your spine increase by 3.8% (significantly less) and your right femur stay the same? I would guess that there were errors in positioning or interpretation of one or more readings in one or both scans! One thing you might be able to do is to get hold of the images and show them to a DEXA scan expert for checking.

Lynnel17 profile image
Lynnel17 in reply toMet00

Met00, Where did you get a REM scan? Do you know of a site/organization that can provide the location of facilities giving REM scans? Thank you.

Met00 profile image
Met00 in reply toLynnel17

I'm in the UK, so can't advise re availability in the US, sorry. However, the company is called Echolight, so I'm sure they can tell you where they have clinics in the US. I think it's quite limited there at the moment.

FearFracture profile image
FearFracture in reply toMet00

Met00, you replied to me a year ago, and for some odd reason, I never responded. My apologies.

I don’t know if the difference between my spine and hip t-scores are unusual (less that 1 standard deviation difference). The results of my DEXAs can be found here healthunlocked.com/boneheal...

You are right that natural approaches to helping your bones takes a huge commitment. I joined a gym in January 2021, and I spend 45-60 minutes, 3 days a week, working out, mostly using the weight machines. I’m up to 260 lbs, which is more than dbl my body weight, on the leg press machine.

I did not have another zoledronic acid infusion in November 2022. Right now I’m not taking any osteo-meds. I finally found a doctor willing to prescribe HRT but I haven’t made my mind up. Most doctors have said it’s been too long after menopause for HRT to work for me, but who knows, a low dose might be worth a shot, and, in some ways, seems safer than osteo-meds.

How are you coming along with everything? diet? exercise? etc? Have you had another DEXA?

Met00 profile image
Met00 in reply toFearFracture

I'm impressed with your commitment. I have good intentions, but for various reasons haven't been consistent with exercise or diet! My diet is mostly good, but I do lapse at times and revert to eating too much sugar. My exercise keeps being limited by tiredness, injury, lousy weather or simply being too busy. I don't know how you manage so much time at the gym! Because I've not managed to keep up the level of exercise I know is necessary, I've been taking strontium citrate. Before my last REMS scan I'd been taking a quarter dose and my spine score had improved, but hip score worsened very slightly. I'd also been focussing on upper body exercise though, so don't know for sure what was responsible for the increase. I'm now taking half dose and will see what impact that has, if any, on my scores.

Do you know what led to your low t-scores? Ignoring the last DEXA scan which had my spine as -3.6 (REMS said -2.6), my scores are only just into the osteoporosis range, so in theory I don't have much to worry about. I'm not totally against meds, but can't see the point while my fracture risk is relatively low. Even if it rose to 20% (currently under 10%), I'm not sure that would be enough to convince me, because that would still be an 80% likelihood of not fracturing, so statistically I'd be most likely to stay fracture free. Bisphosphonates only lower fracture risk by 50%, so 50% of people who would have fractured without them will still fracture despite taking them.

I'm not planning to have another DEXA scan, but intend to have my third REMS scan this summer (2 years since the last one). I trust REMS more than DEXA, so can't see the point in having any more DEXAs. It will be interesting to see whether my GP ever invites me for another one, as it's coming up for 5 years since my last one, and I only had that because I asked for it, 3 and 1/2 years after the first one.

FearFracture profile image
FearFracture in reply toMet00

I went through an extremely early menopause. I was 32 and unfortunately I didn’t get/do HRT. I’m 54 now.

By my mid twenties, I was skipping periods and I really saw it as a blessing LOL I mean who likes having to deal with that monthly. I had no idea that missing even just one period is bad for one’s bones. In my early 30s after going several months w/o a period, I went to the doctor and he told me I was in menopause.

The sad part is doctors were treating me for all the wrong things. For example, I had really bad acne in my 20s and I took tetracycline for anywhere from 6 months to a yr. A few yrs after the tetracycline, I took Accutane. The tetracycline didn’t really help too much but the Accutane worked wonders.

In 2016, I started thinking I might have Celiac Disease (Celiac can cause premature menopause) and I cut gluten from my diet and a million things improved—ex. I was a life long nail-biter and once I stopped eating gluten I stopped biting my nails. My gut feeling is that gluten caused the painful acne I experienced in my 20s.

I now know that the meds that were prescribed to treat the acne are not good for one’s bones. Tetracycline is an antibiotic. I recently read that long term use of antibiotics negatively affects vitamin k levels. Additionally, Accutane is a high dose vitamin A med. Too much vitamin A is horrible for one’s bones.

I know my t-scores sound horrible but I don’t have any fragility fractures. I had a DEXA with TBS in December 2022 and my L1 showed trabecular bone was partially degraded, my L2 and L3 showed trabecular bone in the normal range and my L4 showed degradation trabecular bone. I don’t trust the TBS reported for my L4. My L4 is oddly shaped and I think area was captured that shouldn’t have been.

Also, I had an MRI of my lower back, in 2016, and no one came to me saying that my bones were awful. I doubt seriously that my bones decreased a ton from 2016 to 2019. One of my goals this yr is to show that MRI to the doctors I see and ask them what the MRI shows regarding my bone health.

bonewarrior profile image
bonewarrior in reply toFearFracture

Hi there FearFracture, you may want to read my post from today regarding my improved scores after two years of exercise, supplements, no medication and living my best life! Hope it helps! Not reversed, it is still osteoporosis, but improved scores!

Abuela5 profile image
Abuela5 in reply toMet00

Hi, I'm so relieved to have found this thread. I'm also looking for ways of improving or slowing down bone density loss without the osteoporosis medication because my experience with oral alondronic acid was horrific- I felt as though I was being poisoned.

I'm 71, live in the UK - generally very healthy, the osteoporosis was only discovered after I had a pelvis X-Ray because of hip pain, which meant I couldn't walk very far. I also have moderate osteoarthritis of the hip, and had a steroid injection, which was brilliant. I'm generally very healthy, a good weight, eat a calcium rich diet, take Vitamin D and K2, magnesium etc and have been seeing a physio for exercises, although I'm not very diligent!

My Dexa scan results in August 2021 were:

Spine osteoporotic T-score -2.7;

total hip osteopoenic -1.2;

femoral neck osteopoenic t-score -1.8.

Yesterday I had an appointment with an NHS rheumatologist who wants to treat me with a yearly zoledronic acid infusion. I'm very reluctant to agree to this after my own experience with AA tablets, and reading some of the patient reviews of ghastly side-effects of the Zoledronic acid infusion. We agreed I would wait and see and repeat the DEXA scan in 2years time.

I was very interested to read that a REMS scan is a more reliable way of measuring bone loss. It's so reassuring that you've managed to slow down your bone loss. The doctors do not seem to want to encourage the non-medication route, as it takes so much effort, and the treatment route is easier for them. I think the problem for them is that there's not a lot of robust evidence to recommend the non-treatment route. We'll just have to find out for ourselves!

FearFracture profile image
FearFracture in reply toAbuela5

Your T-scores are significantly better than mine. In July 2019 my spine was -3.9 (t-score) and in July 2021 it was -3.7 which satistically is not a significant change. I'm 53 and have had no fractures (at least that I am aware of) but no fractures have shown up on either of my DEXA scans and I have had a few xrays of my back and ankles and no fractures showed up so I think I'm fracture free.

I took the Alendronate for 1.5 years and stopped taking it the week of my 2nd DEXA scan. I stopped because I was experiencing digestive tract issues. I took about a 4 month holiday from bisphosphonates and at my doctor's advice had my 1st zoledronic acid infusion in November 2021.

Prior to getting the infusion I drank plenty of water and took two tylenol with plenty of water. The infusion was administered over at least 15 minutes (it needs to be that long or longer from all I have read), and after the infusion I drank plenty of water.

There were a few things I really feel like my endocrinologist dropped the ball on. 1st you have to have a blood test within 30 days of getting the infusion. Your kidneys and calcium levels have to be fine. Fortunately, I figured this out for myself and had the blood work done one week before getting the infusion. Additionally, my doctor really failed to tell me about ONJ. I found that out on my own. If you do decided to get the infusion, make sure you talk to your dentist 1st!!! And have a full dental exam with x-rays.

I haven't had any real issues with the infusion. Shortly after getting it (meaning within about 3 hours) I did have some sharp sensations in my neck but they weren't really painful and they didn't last long at all, between 5 - 15 minutes max. I am also experiencing dry mouth, which makes me nervous but I'm just trying to relax about it all and am hoping for the best.

If you really want to avoid meds, I would go all in on the prunes. The original study showed 10 prunes a day and they say you can eat just 5. I started with 5 and I am now up to 6 - 7 a day. I intend to eventually be eating 10 a day because look at my numbers. To get my bone density back to osteopenia I need like a 15%+ increase in bone density. That seems like a tall task but honestly, I'm optimistic.

Since you are in the UK you should contact the Royal Osteoporosis Society theros.org.uk/latest-news/2... They have approved the Marodyne LiV (Low Intensity Vibration) platform for treatment of osteoporosis. Talk to your doctor before using it because of your fractures. I think Marodyne LiV sounds very promising and I am considering getting one at some point. The research for LIV was funded by NASA. They are very interested in Bone Density because astronauts lose bone mass at an accelerated rate in space.

Note, if you do look up the Royal Osteoporisis Society, currently their website contains a 'dated' pdf file about LIV. It's from 2017 so I wouldn't go by what that says because I am pretty sure they approved the Marodyne LiV device after 2017.

I have been looking for personal opinions from ppl who have actually used the Marodyne LiV platform and on an app/website called Inspire.com, I found a post from 9 years ago, so well before the Royal Osteoporosis Society had approved the device to treat osteoporosis. In this post a woman (User ID: Londoner) wrote that her 82 y.o. mother's doctor wanted her mom to use Fosamax. Instead the 82 y.o. mom chose to try the Marodyne LiV platform. After 2 yrs using the device, her mom's BMD increased by 8% in her spine and 7% in her hip.

Abuela5 profile image
Abuela5 in reply toFearFracture

Hi,

Thanks for your detailed reply, also the info about low intensity vibration. I've been in touch with the Royal Osteoporosis Society about whether to have zolendronic acid infusion, which has been prescribed by the rheumotologist, but the helpline nurse didn't mention LIV. The rheumotologist wasn't pleased when I said I wanted to wait a year to see if diet, supplements and exercise made any difference to my t-scores. I also had a private (non-NHS) REMS scan which showed different scores (spine -2.5; hip -2.4) from the DEXA, suggesting that the DEXA scan was less accurate.

FearFracture profile image
FearFracture in reply toAbuela5

Well, I want to begin with, I try to post truthful info, but in another thread on this website, an ROS admin person responded to what I wrote saying that the ROS has not approved Marodyne LiV for the treatment of Osteoporosis. I feel somewhat confident that I read something to that effect somewhere on the internet, but I haven't been able to find where I saw it. I did find this website megsmenopause.com/shop/coll... which states:

Marodyne LiV

Set to change the way consumers and medics deal with the bone-thinning disease, Marodyne LiV (Low-intensity Vibration) works by encouraging bone growth, building muscle mass and strength and stimulating blood circulation and lymphatic flow. And it takes just 10 minutes a day to see results. It has no contra-indications, everyone can use it.

A number of clinical studies that show LiV can assist in the prevention of osteoporosis in post-menopausal women and promote bone and muscle growth in younger osteoporotic women. It is officially recognised by the Royal Osteoporosis Society and recommended in the UK by Dr Louise Newson and Meg Mathews.

============================

If you are interested in possibly trying LIV therapy, I recommend asking the ROS about the Marodyne LiV to see what they say.

The Marodyne LiV platform has not been approved by the FDA in the US for treatment of osteoporosis but the reason for this is rather goofy.

NASA funded much of the research behind Marodyne LiV. Because astronauts lose so much BMD when in space, NASA is constantly looking for ways to combat this. The studies show that the Marodyne LiV platform does improve BMD but there are no studies showing that it prevents fractures--that's what I meant by "goofy". Since their are no studies showing that it prevents fractures, it seems that it is unlikely that it will get FDA approval, which means in the US, health insurance will not cover the cost of the device to treat osteoporosis.

I actually contacted my Congressperson about trying to get FDA approval for the Marodyne LiV platform (If it only cost $500 I would just buy it but $3000 is a bit steep. Regardless, I might purchase it anyway). When my Congressperson's office reached out to me, I was informed that, due to COVID, the FDA wasn't working on anything that isn't COVID related; however, they also said that there is an LiV device being fast tracked by the FDA. That device is a wearable low intensity vibration belt (OsteoBoost). The website is bonehealthtech.com/

Again, it is not on the market yet but if you visit their website you can enter your name on the "to be notified list".

HeronNS profile image
HeronNS

I did not have OP but alendronic acid was recommended because I had other risk factors: t-score -2, taking prednisone and a previous fracture, although I dispute it was a "fragility" fracture. Please Google 'healthunlocked my osteoporosis journey' for my story. In one year my t-score improved to -1.6 without any bone meds ànd while I was still on a dose of pred greater than 5 mg for more than half that year.

Here it is:

healthunlocked.com/pmrgcauk...

Pte82 profile image
Pte82

FearFracture, to answer your question, at least my mother did. Twenty years ago my mother was 83 when she stood up and her femur broke. At that time her doctor had her using just calcium and vitamin D. I researched bone health and found bovine bone from New Zeland was naturally recognized by the body and added phosphorus, protein and trace minerals to this she used boron, silica, magnesium, vitamin D3, previously used D2, and microcrystalline calcium hydroxyapatite, citrate, malate. Calcium carbonate was perviously used. Subsequent bone density tests showed her bones were becoming stronger. So even though her doctor said an eighty year old can't build bone, she did.

FearFracture profile image
FearFracture in reply toPte82

Pte82, thank you for replying.

Just want to make sure I have this correct, before the fracture, your mother was taking calcium carbonate supplements, and after she fractured, you switched her to microcrystalline calcium hydroxyapatite? I’ve actually been asking about calcium hydroxyapatite but haven’t rec’d any responses. Do you know how much microcrystalline calcium hydroxyapatite she was taking daily and what brand?

Pte82 profile image
Pte82 in reply toFearFracture

FearFracture, that is correct about the switch. Started with 500 mg a day. I think it came from Douglas Labs. To cut down on the number of individual supplements I searched for a single supplement that might be more inclusive. I located a company in New England that did better than that, they had a calcium magnesium supplement that included all of them! The company was Pioneer Nutritional.

FearFracture profile image
FearFracture in reply toPte82

Pte82, I keep a running list of questions for my doctors and then ask them the questions during appts and one of my doctors uses a software system that lets me submit questions via a portal. The switching to microcrystalline calcium hydroxyapatite is one of the questions on my "to be asked" list.

Did you or your mother ask a doctor about switching to microcrystalline calcium hydroxyapatite or did you make the change on your own?

Pte82 profile image
Pte82 in reply toFearFracture

I made that change without consulting her doctor. My research showed it was the most beneficial form of calcium and since it was being balanced with adequate magnesium it was not going to pose problems in soft tissue. I had learned calcium without magnesium is toxic and this form of calcium definitely needed to be balanced.

MautheG profile image
MautheG

Yes, you can reverse osteoporosis through weight baring exercise, supplementation, and a high protein diet. Try this before the prescribed drugs. Health Span Nation (HSN) has helped me tremendously reverse my bone loss through this method.

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