Has anyone found the cause of their osteoporosis and addressed that? Not just guessing which I have done but actually seeing a bone specialist who can get to the root of why we are losing bone mass.
How common is testing using blood and urine samples to discover more about the state of our bones? Should we do that?
What countries are doing this better? What questions should we be asking?
Let’s pool what we know about causes and testing.
I live in England. I was refused a DEXA scan even though I had fallen and injured my coccyx, as well as having a Mam and Nan with broken bones due to OP.
It was only after falling and breaking both wrists several yrs later in 2010, that I got my scan.
I wasn’t offered any OP blood tests. I asked for a vit D test was was refused this with the comment that everyone has a low level. I was given AA and Calichew D3.
I stopped AA after 10 weeks and asked for a NHS Consultant referral.
In May 2011 I got my appointment and blood test: vitD, Mg, parathyroid and Ca.. They were all normal. I was allowed a repeat DEXA 2 yrs later to check the SR was working. No scans since or blood tests. I arrange and pay for my own vit D tests twice a yr.
its probably a post code lottery and I’m just unlucky to livein in wrong area.
Hi my doctor told me it’s mainly genetic and I think this could be true for me. I have done lots of weight-bearing exercise for years and yet I have osteoporosis in my hips. My mum, aunts and a couple of my cousins all have osteoporosis. We all have small frames. However my twin sister who is much heavier than me does not have osteoporosis.
Hello Kathleen
My osteoporosis was diaganosed by a DEXA scan. Bone density. The cause has been related to long term steroid use coupled with too larger dose of Dalteparin( blood thinner). I had lost weight & it was a long time before my haematology appointment so it was left undetected until I suffered triple spinal fractures. T10 - T11 - T12. Very bad pains, even up to week 13 afterwards. Rheumatologist can find out also.
I'm now recovering very slowly. It affects day to day living. If you live by yourself it is extremely difficult.
The upside is my neighbours have been outstanding assisting me.
Hope this helps with you diagnosis.
Regards
Christine
Hi Kathleen, great question and one I find difficult to answer. As I understand osteoporosis to be a condition caused by an another issue or illness, rather than an illness itself. I have ahd a range of tests run to isolate the cause, mostly looking for issues with my endocrine glands, these all seem ok or at worst ambiguous (borderline limits). I am also deficient in Vit D (45nmol/l), low in free testosterone (probably caused by high level SHBG(blocks testosterone) - above limit) and high cortisol (at top end of normal range). I am also guessing that I have not been getting enough Ca, K2 and other things like Boron over the past 5-10 years (I am 60 now) due to a restricted celiac diet. My endocrinologist does not believe Vit D deficiency is the likely cause, has no opinion on the low free testosterone/high SHBG and appears unaware of things like Boron/K2. However he has tested a range of things to look for endocrine issues/Cushings/parathyroid tumours etc and so far these appear OK. My assumption is that due to likely deficiencies in numerous minerals over past decade, together are likely cause of osteo, added to being tall and thin placing me in higher risk category. Aside from the low BMD in my Dexa scan, I have assumed that as I have not had a minimal trauma fracture, perhaps my bone quality is good (I understand bone quality is 30% and BMD is 70% of bone strength). Issues with things like Calcium levels in blood as they don't tell us what the Ca level in the bone is. Assume Mg, Boron, Silicon, Phosphorous are the same - blood tests levels only tell us the blood system is being balanced - perhaps by taking from the bones. K2 tests are also blood serum tests, studies seem ambiguous on K2 levels in people with osteo, some showing positive correlation others showing no correlation. Vit D test appear direct and valid on levels and impact on osteo. Not sure about Boron testing, however supplementing for only a week, saw improvement in mild osteoarthritis and testosterone levels with conservative supplementation and adding to diet.
I am just starting to realise doctors need to do more. They should be isolating the exact cause/s and address that. I could not take HRT because I had two sisters with breast cancer but that has not been proven as the cause. I have Crohns that is in remission and that could have done some damage especially the drugs to pull it up like hydrocortisone in high doses.
No proof has been shown because no one has asked or checked.
Hi arlene, did you doctor give you nothing additional in terms of the cause. In my case I am not aware of any in my family having osteo, however this might be due to the lack of diagnosis, my grandfather did break his hip at 88, presumably his bones were not in good shape. I also have a light frame, this is the genetic part, I cannot imagine that one can do nothing in terms of diet and tracking the chain of causes through hormones etc to see how to address this. I have also done plenty of exercise including weight bearing over the years, perhaps things would have been worse if we had not done so, and perhaps we lacked the necessary minerals and vitamins for this to be effective?
Wow that is comprehensive and you have done more than most people to isolate the cause. I am pretty certain that vitamin D3 is hugely important so that doctor is wrong to say it is not connected. It works with calcium as far as I know and without it a major cause of osteoporosis is present. Another one is magnesium.
People who have been lacking in magnesium have been found to have osteoporosis. Boron is in prunes.
Another thing we need to look at is our other meds and I have quite a few.
One culprit could be Pariet which contains rabeprazole and I take that for acid reflux. I have a tzaski ring (spelling) at base of my stomach.
Schatzki ring (proper spelling)
The schatzkii ring is located at the gastro oesophageal juncture. I just checked.
Hi Kathleen, your comment about the doctors needing to do more is the primary reason I am trying to educate myself on my condition and how it should be treated. It highlights the issues faced by many others on this forum. Doctors do not appear motivated to treat patients as individuals, and too easily prescribe drugs as a standard protocol when there are alternative ways to treat that ar less harmful. I am not sure if this is due to incentives from drug companies, incomplete understanding of the illness oor of the patient, a combination, or other unknown reasons. The fact that the recommended ranges of Vit D vary from <50nmol or <75nmol as deficient depending upon the authority is not acceptable. A variance of 50% is effectively malpractice. My endocrinologist tells me Vit D is unlikely to be the cause in the face of so much research but does not support his own position. Does not advise me on supplements diet or exercise, and suggest I should be using Prolia or similar without any reflection on other options. I am not prepared to be driven by approachers like this to deal with my own health
Hi tbulley, I read your response to Kathleen with interest and some sympathy - with interest because I've rarely seen such a castigation of doctors, and with sympathy because of your obvious frustration at your unsatisfactory treatment.
You listed:
" not motivated to treat patients as individuals" (? lazy and rigid in their approach)
" too easily prescribe drugs" (? incompetent)
"incentives from drug companies" (? corrupt)
"incomplete understanding of the illness" (? not properly trained or not very bright)
" suggests I should be using Prolia without any reflection on other options" (? unprofessional)
" malpractice" re. his views on Vit D (speaks for itself).
" does not advise me on supplements, diet or exercise" (? negligent).
Were you to put these views to your doctor he could well initiate legal action.
I completely accept that these are your strongly held views and I think it's awful that any doctor, albeit unknowingly, would have his patient in this state. You are obviously a very intelligent and resourceful woman and yet - here you are! Does this doctor have a clue about your anger and concerns? If he doesn't, he should! If he does, then get another specialist - NOT a GP . . . A GP knows a little about a large range of medical conditions and therefore is spread very thinly . A specialist knows a lot about very little. Both have a value.
I have worked in 4 major city hospitals over 37 years as a paramedic and it was plenty of time to form a view about the profession - from junior doctors to consultants. Doctors are like any other workers:
I've met lazy ones, ones I wouldn't consult, competent ones, world-class inspirational ones. I've seen those with total dedication to their patients - whose family life and marriages have therefore suffered badly, and those, who though very ill themselves, just kept working until the end. I'm sure we all know ordinary people like this also.
However, I have never encountered a doctor who was in medicine for the money - as those who practice other professions often are. To me, they genuinely want the best for their patients, though, of course, some of them fail abysmally in this. Your post vividly draws attention to this deficit.
Finally, you said at the start of your post "I am trying to educate myself on my condition and how it should be treated". Are you saying you need to know more? Great. But becoming your own doctor, as it were, I think is a mistake - and an isolated place. A half-way position would perhaps be to 'unearth' a really good specialist who has studied, and practiced, and supervised, and researched the area for decades.. . He HAS to know more than you at present and would be more than able to discuss your concerns and answer your probing questions. You never know, both of you may enjoy it !!
Kind Regards, J
I tried to respond yesterday but there was an issue with the site.
Vitamin D is a major cause so your doctor is wrong about that.
My husband requires twice what I have and that information came from our blood tests. Have you had the level checked in your bloods?
Calcium can be checked there but there is an issue with that and it is more complicated than I realised. Apparently, calcium can be drawn from the bones when required. I am doing a small top up now.
Magnesium is another one to watch as people with osteoporosis have been found to be lacking that.
It is indeed hard to find a specialist who will do the necessary investigations.
There is much still to learn about our bones.
Juno, tbully listed all that information in good faith and if they were her experiences then she should be believed. Not everyone is lucky enough to find excellent doctors who take good care of them.
My Dexa scan took nothing into account. My husband is nearly a foot taller than I am and he was measured the same as I was except for our gender. I notice that some people have variations noted which my husband mentioned but it was not done for us.
GPs cannot be expected to know everything but some are ready and willing to research or follow up on our research.
I have not seen a specialist about my bones.
Tbully should be praised for being so thorough in her endeavours to help her bones.
Patients have been the ones changing some care in relation to bones. Doctors are listening. Vitamin K2 would be one example.
I told my GP about the test to check if it was safe to have teeth extracted which she thanked me for and passed it along to other GPs.
People power is often good especially when we are respectful.
Hi Kathleen, of course I believe her! Otherwise I wouldn't have responded. Her frustration and annoyance were manifest. Also, perhaps a sense of abandonment. . . .
You also say that some GPs " are ready and willing to research . . " I'm sure there are SOME who aren't overly busy (those in rural areas?) but certainly not the majority. All the GPs I know are endlessly busy and overworked - too many patients, vast amounts of compulsory paperwork, and now must be overly cautious (and therefore ordering 'unnecessary tests'
because of constant fear of litigation. . . Tough job.
J
J
PS. Don't know where the' smiley face' came from!
Australia may be a little better then because mine would research and follow through. She was in great demand because she was caring and thorough. She moved interstate unfortunately but did refer us to one she knew was quality thorough. Our appointments maybe longer too. I am always urged to make a double one which is half an hour. Australians usually are not litigious either.
Equally not quality, stupid auto correct!
I disagree. I don't think any of us would say that we'd ever without going to medical school become more knowledgeable than our doctors. But as patients we can indeed learn more than most doctors about a particular condition. I happen to be lucky, for example, that the doctor who diagnosed my PMR has pretty much left me alone to manage my own prednisone tapering but even she messed me up quite badly last year when I had got to 1.5 mg pred and instead of renewing my prescription she told me to "use up the rest of your tablets and see what happens". What happened was a flare, and I had great misgivings when I tried to do as she said, feeling it was a mistake but hoping for the best. This was a year ago and I'm still not back to 1.5. So that's a simple example of knowing more than my doctor, even a good doctor. As for osteoporosis, when I improved my bone density without taking medication she asked me how I did it. So that's another example of a doctor not knowing everything - and I know more because I'm free to read about "alternative" i.e. non-allopathic modalities. Doesn't mean she doesn't know infinitely more about diseases than I ever will. But in this very small slice of information which affects me personally I'm able to become an expert.
Happens all the time - something to do with punctuation, the program reads it as an emoticon even when we don't mean it, and I have never figured out which symbols do this.