Osteoporosis results range for different parts of the body

Good luck with it all.  If you google healthunlocked my osteoporosis journey you will find an account of what I've been doing.  

The Prolia information might have been known for some time but the general public only became aware of it a few months ago because of media coverage.  Another case of industry hiding inconvenient truths!

Thanks Anhaga I have read your journey post and answers to others on forums. One message that comes across is the tendency of the medical profession to mindlessly apply protocols whether due to pressure from pharmaceutical companies, or own limited perspective. 

I had Dxa scan as a I broke 5th metatarsal in foot after a bad fall (as it happens my legs and feet are OK in terms of bone density), I noted that if I had weak bones I would have broken many more in the fall, I also tripped in a gutter a couple of months after the break and did not break anything. Have you seen any information that contrasts bone density and bone strength - they are different things but perhaps its hard to measure actual strength and people equate density with strength. As people note some of the meds make bones more brittle at the same time as increasing density. My Calcium/Mg/Phosphate levels are well within the normal range, but still tend towards low side. As they tested to see why I was getting osteo but still active, have tested various others. The tests that are borderline are cortisol (at upper edge of normal range) and mid normal for other tests (cortisol saliva) so doing more tests for Cushings and waiting for these results. Others tests outside normal or right on the limit. SHBG is over threshold which pushes my available testosterone down (but still within normal range), renal phosphate threshold is below, urine creatinine is at high end of normal. As the ranges vary depending upon different authorities/organisations, like Vit D, some say below 50nmol is lower limit, others say it should be 75nmol. 

I am heartened by you and others here that are pushing back and have made gains going the natural way of focussed exercise, diet and supplements to deal with osteo. When my tests came back, initial focus was on some underlying pathology for osteo, and assumed I would just take drugs for osteo. Endocrinologist has not found anything definitive in tests thus far, but still waiting for result of Dexamethasone Suppression test. As far as I can tell Vit D and related (k2), as well as high normal cortisol and low normal avail testosterone could be the cause of osteo - perhaps even Vit D deficiency alone.

I am also taking a plant based mineral supplement   

I remember a discussion about how to test for bone strength and unfortunately it involves an invasive biopsy, which no patient would want and no doctor would order.  The DXA scani s the best we have, but it's only a guide, and because the bone density of a small light-framed woman is not differentiated from that of a large-boned woman it is a clumsy measure at best.  If you are ever in a room full of people who have been diagnosed with osteoporosis you will find they are overwhelmingly, although not exclusively, thinner people.  had a fracture, tibial plateau, which was called "fragility" when they measured my risk factors, but considering the circumstances I think anyone would have suffered a serious injury.  And given I'm a bit of a klutz I should, like you, have broken more bones in recent years, but I haven't.  Touch wood!

I think the Vitamin D level is very important and may have had more to do with your bone thinning than any other single factor.  Personally I think Vitamin K2 is essential. I've also noted someone posting on either this or the healthunlocked forum about a condition I think is called parathyroidism (not sure) which, once corrected, also stops the bone thinning.

It was raised parathyroid hormone levels.

The reason I raise the bone quality question is the info on some of the negative side effects of drugs that retain old bone instead of allowing old bone to be removed and new, stronger bone to be formed, as well as the risk factor of fracture being over 2.5 T score as well as having fractures from mild falls. It means that BMD becomes the gold standard. I also have a thin light frame and tall, so am at higher risk, however so far (touch wood) when I have broken bones that have been severe impacts. Once again I think the medical default is to assume a fracture must be because of weak bones not because of a serious impact or fall. I have normal parathyroid levels, until now I had never heard of parathyroid, according to the reams of tests I have  my total and ionised calcium with normal PTH indicates normal parathyroid status. I have compromised gut function, avoid gluten, lactose, sugars, and soy so with food avoidance and actual gut issues my absorbtion as well as a lack of things in my diet are probably part of the underlying cause over the past 10-15 years that I have been aware of gut problems. Part of this has been an issue absorbing fat and as Vit D is fat soluble, it makes me think that lack of Vit D is central to my issues. I manage to do a fair amount of exercise, but not as well spread across the week or year as it probably should be. I see comments about boron and prunes being good things to take as well as the Vit D spray to give better absorption in mucous membranes instead of the gut - I have been using the spray for past 9 months. I am also experimenting the biodensity machine exercises on normal gym equipment. As there are 4 exercise, chest press, leg press, ab crunch and lift, machines with enough weight can be set up to give a multiplier effect on body weight. What puzzles me is the frequency of the biodensity is just once a week in the trials, surely 3-5 times a week would be more effective.

Hi Anhaga, when you note the lack of differentiation between you as a small, light framed versus a large boned, what inferences have you drawn from this? As a tall, thin and light framed male, so around 187-8 cm tall and weight between 70-80 kg over the past decade, I assume that my light weight stimulates less bone growth but also less need for heavier bones to support less weight? I assume I could also add that being tall my centre of gravity is higher and I have further to fall increases my injury risk. I am probably splitting hairs, but am still trying to make sense of the underlying causes for my osteo, since I am not optimistic that the medical profession can give more than specifics and these biased as well.

I think this is a puzzle for us all, and also shows what a clumsy tool the DXA scan and t-scores are.  Each of us is measured against a standard derived from a young adult of our own sex.  There is another measure, z-score, which compares us with our age cohort, but I think that's even less useful and I don't know how many of us are even told this score.  It is my understanding,l although I can't remember where I read it, that there are different standards in different countries, so the standard to measure a relatively light-framed person native to the subcontinent of India is different from that used for a larger-framed Scandinavian, for instance.  In countries where there's a wide variation in ethnic origin, as in the Americas or Great Britain and its former dominions, it must be impossible to come up with a truly reliable system.  Certainly one size fits all isn't great, but it seems to be the best we have at the moment.  Maybe the people who standardize these things could develop a formula taking into account not just things like our height, age and relevant medications, but also measure our wrist circumference, or some such body part, which could be an indicator of our build and thus be able to personalize our scores more accurately. 

Are you able to tolerate fermented foods (yoghurt, kefir, some cheeses, kombucha, vegetables like sauerkraut and many others?) because these seem to be helpful.  I suspect it may among other things have something to do with making Vitamin K2 more available. This sends calcium to the bones. 

Thanks Anhaga, as my objective is to obviously halt or reverse my osteo naturally, I am trying to construct a map of the disease, the possible causes and various therapies, supplements, exercise and drugs. Your insights have been most helpful. My T score is 2.5 and 2.9 for hip and spine, my z score is 2.0 and 2.5. As my endocrinologist focuseed mostly on causes and though not all my readings are in side the limits, none of them so far indicate an obvious primary cause, however as he does not think my 45nmol/L/18mg Vit D is the cause and sees nothing wrong with using drugs against the Osteo (we did not discuss specifics of side effects at this point, because I suggested we wait till 12 months get another dxa scan and re-evaluate- that is due in Sept. Ini the meantime I have done some stuff with Vit D, was 69nmol/L atfer 7 weeks (Dec 2017) so is hopefully a lot higher. As an aside I have a weak immune system, and people also link Vit D to immune system as well as cognitive function and my memory and concentration seems to have dropped recently as well. My immune system seems stronger in the past 6-9 months (less colds and flu, better wound healing etc), once again I think pointing to Vit D. I am reviewing my past 20 years of diet, exercise, issues with gluten etc and seeing if I can put some time frames around the start of osteo. As astronauts lose 1-2% bone mass per month in low gravity, I suppose osteo can arise quite quickly. As I understand the T score, -2.5 means 25% lost bone mass relative to 30 yr old, so somewhere between 2-20 years look like a good range to look at the various factors. I will write this up into a journey and post onto healthunlocked. A dxa test in Sept seems a bit close to be definitive, after just 12 months, I suppose its to check that I am not rapidly getting worse.

I can't remember if I suggested you read my own account, forgive me if I'm repeating myself.  Google healthunlocked my osteoporosis journey for my account of what I did, and still do, for my bones.  

I do eat goat and lactose free yoghurt some each day as well as adding canned sauerkraut and kidney beans to stews less frequently. Occasionally eat hard cows cheese but gut does not seem to tolerate much of this. Have not tried kefir or kombucha, but will now test these out having read your post. Dr Google tells me kefir is easy to make and can use non dairy to do so with the starter kit, so I will get onto this. I am a convert of natural therapies and see the logic of using integrated, natural foods for health. Thanks for the tips.

Test a new fermented food with caution, give your gut time to adapt.  When I bought kombucha for the first time the vendor said, no more than four ounces to start.  There's a chance canned sauerkraut has been sterilized, otherwise it would continue to ferment, but maybe you are using the term "canned" generically, as I think that's also used to describe foods which have been home-canned, but are actually in glass jars?  The fermented veg I buy is in glass jars and I always loosen the lids when I get home with them to let the gas buildup escape!  Kombucha can get pretty fizzy, too, like soda pop!

Thanks Anhaga. My daughter has had kombucha in the fridge before and I regarded it with suspicion, it got chucked because it was not drunk. We will resurrect it and share. I will try and be careful of overdosing myself. My problem is that I am very disappointed by the ineffective medical advice that I have received and so have many on these forums. I am researching my blood tests results in detail and coming up with questions and insights not even considered by my specialist. While he might have decided that I am not qualified to absorb the obtuse science, his dismissal of Vit D deficiency among other things is a real concern. Perhaps you have seen this article about the DEXA as a predictor of fracture and the haste to prescribe drugs - a real concern. I am also seeing so much about the benefits of boron supplementation many of them applicable to me. The whole chain of Vit D, Mg, Ca and K2 not even raised by my specialist while postponing any drug treatment until a 2nd DEXA is done. I must thankyou again for your insights to me and others, you are a real gift to us here, no doubt you do the same in other spheres of your life. My canned sauerkraut is indeed tinned from the supermarket, I will hunt some down from better sources.

Osteoporosis: the emperor has no clothes.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4497616/ ;

Yes, I know that article, and if anyone else is reading this thread I recommend they read it!

There's interesting threads on the Bone Health forum on Healthunlocked, and it's easier to post recommendations as the monitoring is not so tight.  Fortunately Patient now allows posts from a number of the best sites to be posted without having to be moderated first, like the one you've shared.