Puzzled by diagnosis : I’m 62, 5 ft 1in... - Bone Health

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Puzzled by diagnosis

M3745 profile image

I’m 62, 5 ft 1in. , 109lbs. I was diagnosed 2 months ago with severe osteoporosis, lumbar -3.9. I have not started treatment yet, waiting to hear from doctor after some bloods and tests checking for secondary causes. What I am so puzzled about is that over the years, I have done some pretty heavy lifting. Some of it is for my job, lifting heavy boxes, helping my husband getting appliances up the stairs, moving furniture, and of course holding my grandson and dancing all over the house with him. He’s 2, so of course I‘ve had to stop that and everything else. I’m not doubting the dexa scan results but how is it possible that I have not had any fractures or compression fractures to date? Also, my fingernails are very strong. No chipping or splitting. Every one in my family is petite and there is family history. Have I just been lucky all this time? Dexascan was preformed to check whether I should take a PPI long term.

30 Replies

I think you’ve probably just been lucky - it’s just tough really.

I was71 and 5’2”, I wasn’t what I would ever call petite but I wasn’t obese, I haven’t lost height, my hair and nails grow like mad. I’m very active, I’ve lugged heavy weights and furniture about. I’ve done lots of heavy duty gardening, walked miles, cycled, gone camping, have done Pilates since 2007.

I’ve fallen off my bike regularly, I fell off the platform of a bus very recently and landed on the pavement on both knees and both wrists - fortunately I was carrying two shopping bags and held on to them so my wrists had a soft landing. After that massive fall I was convinced I was lucky and I’d missed out on the osteoporosis gene! Clearly I hadn’t! Then I broke my wrist in January and lo and behold - osteoporosis. Such a shock.

I have no secondary causes - but I have got a family history of osteoporosis and I’ve also got inflammatory arthritis - I was given a three month course of steroids for that. I’m also in remission from Graves’ disease. Both were diagnosed years ago - 5 years for the IA and 8 for the thyroid. I wish I had known then that both were likely to lead to osteoporosis. Fortunately when I was offered them I didn’t take PPIs for long - I decided to clean up my diet instead so that was one blessing.

It is well worth joining the ROS - they have an on call nurse you can speak to if you want to and masses of information about all aspects of osteoporosis plus leaflets on everything you can think of including exercise plus some very useful sheets on how to get more calcium and vitamin D into your diet.

It’s an awful shock when you find out isn’t it. But there is lots you can do for yourself to make you feel that you are going to win. You will find people on here - some with worse scores than you, some with better but who can give very good advice.

I found your post very interesting! What is ROS please?

springcross profile image
springcross in reply to Einny

Royal Osteoporosis Society.

Thank you for your reply, I’m in the US. Can I ask what kind of treatment you’ve had. My doctor gave me the choice of recast, forteo, or Prolia.

I was given plain old alendronic acid. 70mcg once a week. You take it on an empty stomach, standing up and with a large glass of plain tap water, you stay vertical for half an hour then eat an hour later.

Some people (I didn’t) find they get gut and oesophageal issues and can have an annual infusion instead.

Hi FruitandnutcaseYou are right about the alendronic acid causing problems with the gut and oesaphagus, I decided to come off it years ago, after having endless endoscopies, resulting in an inflammation of the oesaphagus. Now my osteoporosis has worsened, and all I take at present is Calcium and Vitamin D3.

Do you know of anything else that can be taken instead of alendronic acid?

It's also a pain not being able to have any teeth extracted when on alendronic acid, as it can cause seroius problems with the jaw.

I think there are probably other options to AA and also AA in tablet form. I’ve got a friend who has an annual infusion of alendronic - that bypasses your gut and oesophagus. I didn’t want that because apart from making me feel ill I just didn’t want to take it because I can’t see how hardening and stopping old bone from being renewed (even if it renews slowly at my age) can be the right way to get strong healthy bones - but I’m not a doctor.

I get lots of weight bearing exercise, do pilates, I try to eat well with lots of green leafy vegetables.

I take 3mg boron, I take between 1000 - 3000mcg D3 - depending on what my blood tests reveal about my D3 - I test regularly and even in the sunniest weather I find I still need to supplement

I now buy my own calcium citrate because the stuff I got from my doctor really upset my gut and it was decided to increase my dietary calcium and I could stop calcium but I want to take some if I can,

I take 100 mcg vitamin K2 Mk7 Natto - thats to direct the D3 to your bones - well that’s what it’s supposed to do,

I take magnesium lactate - it comes as 56.25mcg magnesium and also has 1.40 mcg B6 - I use Future You in Cambridge

and last but not least I take Omega 3 Algae Oil 250mcg DHA. I’ve noticed that makes a huge difference to my very dry eyes.

Thank you so much for your reply, the info you have given is really helpful. If magnesium does not interact with my heart meds, I think I will give it a try.Stay safe and have a nice Christmas.

Thank you and good luck with it all 😊

PS. Sorry, forgot to mention, have been doing Yoga for over 30 years, but due to pain of osteoarthritis, (waiting for hip replacement) can no longer do exercises, and have limited mobility, so can't walk very far.

It's possible to have low bone density and not fracture, as bone density and bone strength aren't necessarily the same. There's growing evidence that a separate score, the trabecular bone score, is a more accurate predictor of fracture risk than t-scores; but unfortunately only a very limited number of DEXA machines have the software to provide this. Can I ask what your hip score was, as if there's a big difference between that and your spine score, there is a possibility that an error has been made with one or other of the measurements. At my last DEXA scan my spine score was -3.6, my hip score -2.5, but a few months later I had a scan with new technology (REMS scan, using ultrasound), which isn't open to the same errors as DEXA, and both my scores were -2.6.

M3745 profile image
M3745 in reply to Met00

This is what is listed: AP lumbar spine -3.9. Left femoral neck -2.5. Right femoral neck -2.6. Total left femur -2.7. Total right femur -3.0

Met00 profile image
Met00 in reply to M3745

Some experts believe when there's a significant difference in scores, an error may have been made. But I don't think REMS scanning is available in the US yet, so the only way you could check would be to have a 2nd DEXA scan. Things like curvature of the spine can give wrong results, but if this isn't spotted, a second scan would give similar results. I have read that the hip score is a more reliable predictor of fracture than spine, so maybe that's something you could discuss with your doctor.

M3745 profile image
M3745 in reply to Met00

Thank you for your help

It’s possible that as you are small and slim you have strong bones for your size but the scanner is giving you poor results as you are not within the average range the scanners use for their results. There is also this American site that might be of use.

inspire.com/groups/national...

M3745 profile image
M3745 in reply to AnnieW55

Thank you, I actually joined that American site but this one is more informative. I have heard that dexascans aren’t as accurate for small people.

HeronNS profile image
HeronNS in reply to M3745

This is probably true. I believe there are actually different standards used in different countries, depending on the dominant body type, so, just as a casual example, the expectations for a slight person from the sub-continent would be different from those for a large Scandinavian. I have a slight build, not particularly small in terms of height, but my bones are small, so of course I can't have the same DXA result as a person naturally more heavily built. Most people with osteoporosis, according to a workshop I went to, are in fact of slight build. How many of those people are genuinely osteoporotic? Maybe fewer than we are told. I wonder if anyone has actually studied this? It would be difficult to have an accurate "one-size-fits-all" measurement in a place like the United States or Canada where immigrants have come from all over the world so there is no truly average American or Canadian.

M3745 profile image
M3745 in reply to HeronNS

I’m sure my doctor would dismiss it out of hand. My frame is very small. I have an impossible time just finding a watch to fit my small wrists. My ring size is a 4 1/2. My daughter is the same way. We are a small family. I’d love to know if there is really something to that regarding dexascans.

HeronNS profile image
HeronNS in reply to M3745

I'm sure I've read something about this in the past but don't remember where. The osteoporosis line drawn at -2.5 was somewhat arbitrarily decided upon by the WHO at the end of a very long meeting, so it is only a guideline. It's based on deviation from normal bone density of a healthy young person, so it is normal to gradually lose bone density as we age.

Recently I had a stupid accident (tripped over something on my floor and slammed one knee down as hard as I possible could). I was quite badly hurt and had to wear a brace for a couple of weeks and get physio afterwards, but I didn't break anything. I am 73. Haven't had a DXA scan for four years so I don't know my current t-score, but I guess it must still be okay!

I seriously think we should all be taught how to look after our skeletons, in much the same way as we get information about the dangers of smoking, or the importance of a healthy diet and exercise for heart health and preventing diabetes.

The best fracture protection is to avoid falling, which would include exercise to help one keep a good sense of balance, removing tripping hazards (and not creating them haha), and maintaining good muscular strength. Secondly we do some weighbearing exercise, even walking is good. And we feed our bones the nutrients they need to stay strong.

Now your t-scores are worse than mine so I don't intend to be telling you that you should not take the medication. I do know people with readings worse than yours who have gone the natural route and improved their bone density. it takes roughly the same time as medication, so not overnight, but not forever, either. Bones grow slowly. it's a risk, but then so are the medications.

There is room for compromise. If a person feels it's safer to take medication for a while take an older drug with known and controllable side effects (like alendronic acid or its family, not Prolia or Evenity), do all the natural stuff as well, and see how things are after a year. I don't think anyone should have to take any bone med indefinitely, but certainly the natural method would have to be maintained for life.

I don't think I posted my story earlier in this thread. Here it is:

healthunlocked.com/pmrgcauk...

M3745 profile image
M3745 in reply to HeronNS

You have quite an interesting story. I was really interested in your natural approach. My daughter asked her naturopath about supplements for me and she said K2 MK4 is better for bones but I keep reading about MK7 so I’m not sure, I really don’t know much about it, this is all new to me. Also, I should mention that because I have severe Gerd, I won’t be able to take any of the oral drugs, so the infusion or injections is what they want to give me. I have drawn the line at Prolia, the doctor tells me not to google but I want to be informed and Prolia sounds too risky.

Mk 7 is the one you want.

It’s funny when doctors tell you not to google - I’d say that was the first thing most people would go and do at that point.

My friend who is well underweight has GERD which is why she has an annual infusion of alendronic acid.

How is your friend doing on the infusion of alendronic acid regarding side effects?

She is fine, I think she had her third one recently and she seems to be neither up nor down with it. I’ve got a feeling she said it only takes about 15 minutes to be done.

She has gut problems and isn’t (never has been as long as I’ve known her and we go back to the 1970s) a great eater at the best of times - she just doesn’t seem to like food and tends to just pick - something I just can’t understand - so there is no way she will be helping her bones by a diet of green leafy veg and dairy products, nor does she do weight bearing exercise. So her bone health is all down to her annual infusions.

As far as I know she hasn’t had fractures of any sort which is very good news.

She takes the calcium / vitamin D that was prescribed for her by her doctor but not anything else like K2 - Mk7, boron, vitamin C with zinc, omega 3 oil or magnesium like I take.

HeronNS profile image
HeronNS in reply to M3745

I think MK7 is more available to the body. It's what we get from fermented soy, i.e. natto, which is the source of supplements. I believe MK4 is what is available to us through animals completely grass-fed (never grain fed) which convert Vitamin K for us. I'd take the MK7 as a supplement and hopefully also enjoy MK4 through naturally raised cattle and poultry.

M3745 profile image
M3745 in reply to HeronNS

How much MK 7 do you take?

HeronNS profile image
HeronNS in reply to M3745

I actually take 2x100 mcg capsules a day. Some time ago I read that Australia has a RDA of 180 mcg so it's pretty close. The bottle actually says 1 capsule a day. I think it's a vitamin which is hard to overdose which is why there's not a lot of info, unlike Vitamin A, another fat soluble vitamin, which is problematic if you take too much. You will see that dosages for MK4 are very much higher.

I was surprised to read your Dexa scan was to establish if you should take a PPI long term.

Unfortunately, taking different ' prazoles ' for many, many years is the reason for my osteoporosis. These drugs are only meant to be taken for a very short time ( months not years) and this link has been proven (information leaflet advised this too). Doctors are too quick to prescribe PPI's and yes they work quickly but at what cost to future health.

I decided to take the natural route with Slippery Elm. It doesn't work straight away and you have to persevere before you get some relief but there was no way I wanted further damage to bones by continuing with them.

I currently take D3, K2-MK7, Vitamin C, Zinc and probiotics Magnesium sulphate baths (Epsom salts) after reading of the benefits on this forum.

I know what cost to future health? Everyone just wants to fix their own bit of ythe ur body - never mind the other body parts that might be affected.

I was given omeprazole years ago and was shocked when I read the PIL and realised that they were only meant to be taken for a short time yet doctors were handing them out like sweeties to be taken indefinitely- the theory being that doing that was better than the side effects they were given to counteract! Thank goodness I didn’t take them for long although I’d rather I hadn’t taken them at all. I’m not sure they would have affected my bones - suspect I’ve got so many other things that were more likely to have caused the osteoporosis.

What do you do with slippery elm? I haven’t heard of that. What form does it come in?

Rightly or wrongly I’m going down the natural road now. I take all the other vitamins and minerals you’ve mentioned as well as trying to cram in as many green leafy veg as I can and as much weight bearing exercises and stomping around as I can.

M3745 profile image
M3745 in reply to Titian8

I had only been on pantoprazole for 9 months while undergoing many tests to diagnose my severe acid reflux. Endoscopy in November showed red and inflamed stomach lining, esophagus and throat and thickening of vocal chords due to the amount and frequency of acid coming up. Also revealed a hiatal hernia. During this process, I had tried all of the natural remedies, slippery elm, aloe Vera juice, DGL, etc. Unfortunately, the only thing that helped heal the damaged tissue was the pantoprazole. I had tried other less dangerous drugs but no relief. I was on the verge of developing Barrett’s Esophagus. Some of my tests were delayed because of Covid. So in July, my gastro doctor suggested surgery to fix the hernia and tighten the Sphincter. By this time I had healed and was feeling better and he said my other option was to stay on the meds for a few years since I hadn’t been on them that long. He suggested a DXA scan to see how my bones were and if I was already showing signs of osteoporosis, then I should have the surgery. So now he wants to put the surgery on hold because of some other problems they’ve discovered and I immediately stopped the pantoprazole. I’m using famotidine instead and DGL. I’m also extremely careful what I eat. So I started with a very bad sore throat that wouldn’t go away, it turned out to be Gerd with a hernia, then we discovered I had severe osteoporosis, then the doctor ordered blood work to check for secondary causes and now I have a blood disorder to top the year off.

Similar to me then, I had a dexa done when 58 after pain in my back after a fall hiking, showed osteopenia which was really already osteoporosis. Some people just have it ,others don’t. The exercise you have done will have helped it not be worse than it is.

Good luck, you will get your head around this.. Ive only just started meds this year after 8 years of monitoring

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