New on this forum and newly diagnosed with ost... - Bone Health

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New on this forum and newly diagnosed with osteoporosis, advice please

Nanaedake profile image
23 Replies

I recieved a letter from the hospital detailing a 12% risk following a DXA scan which I thought sounded low risk but the GP told me I have osteoporosis via a telephone call. I've booked a face to face appointment in a few week's time. I was sent for the scan after 2 falls and ankle fractures and then fell again but no fracture. I have been prescribed Alendronic Acid, vit D3 and calcium I have not started the AA as I wanted more information before deciding to take it. I have been taking D3 for about 3 years and my level is good, along with magnesium and K2-MK7, vitamin C and a good B complex. I have been eating prunes for about 6 months as only just found out they may be good for bones, also taking some zinc.

How is osteoporosis defined in diagnosis, obviously something showed up in the DXA scan but what do I need to find out at my appointment or before?

I started an exercise program about a year ago so do I need to modify it? If so, can you suggest any good YouTube or other places I can get advice?

A bit confused at the moment and not sure what this will mean for life, work and the future. Good advice or reassurance welcomed.

23 Replies
DJR1 profile image

Just read this and I am wondering if your hospital letter had any more details with it. Do you have any graphs with T scores? If you could tell me a bit more I may be able to help. I used to be a radiographer and did DEXA scanning. What I can tell you is that the hospital report will have been done by a specialist reporting radiographer or radiologist. GP’s often do not understand the data and often misread osteopaenia for osteoporosis. This is a specialised area and I would be reassured by the hospital letter.

Nanaedake profile image
Nanaedake in reply to DJR1

Thank you for your reply. I understand my GP followed up the outcome with the consultant to get a clearer picture as the report was unclear. I'm not sure if the letter I've recieved is the same as the report the GP has recieved.

The letter just says the patient has a 10 year probability risk of a major osteoporotic fracture of 12% and of a hip fracture 2.2% and verbally the doctor said osteoporosis confirmed in L3.

Is osteoporosis reversible and is this a bad outcome or is there hope for recovery?

P.S. no graphs or other information. Do I need to get hold of another report from GP or hospital?

DJR1 profile image
DJR1 in reply to Nanaedake

Hi I asked about graphs as our unit sent them out as part of the letter and it caused confusion as the GP’s often didn’t understand the information. Osteoporosis cannot be reversed but treatment with calcium and Vitamin D or more heavy duty meds like Fosamax or Alendronate can halt bone thinning. It sounds like your risk is statistically fairly low but you have had previous fractures and if there is evidence of lower bone density in one vertebra treatment is a good call by the GP to give medication to stop any further bone loss. It sounds like you are doing all you can with diet and exercise. A little high impact exercise may help like dancing or brisk walking. A good calcium rich diet will also help with good intake of dairy. Lots of information is available from the Osteoporosis society.

People of all ages can have osteopaenia/osteoporosis as it can be genetic as well as presenting as we get older. It is reassuring that your fractures have triggered some preventative treatment which is usually very effective. I hope you are reassured .

Nanaedake profile image
Nanaedake in reply to DJR1

Thank you for your positive response DJR1. I eat a reasonable amount of dairy produce and will continue to do so. I am going to increase my walking from now on and use the gym treadmill when the weather is bad. Also wondering whether joining he local table tennis club might be a help as it's an on the feet exercise and can be quite vigorous if you get competitive! I'd like to dance but there's nothing here that matches my timings.

Kaarina profile image
Kaarina in reply to Nanaedake

Hi Nanaedake

You are entitled to your DEXA scan report and you can ask the receptionist at the surgery to print a copy off for you. It should state your T scores not just the calculation of your 10 year probability of fracture risk on FRAX. You seem to have had a few falls. Perhaps this should be addressed. What do you think?

You are entitled to a Vitamin D blood test to check your levels if diagnosed with OP.

You have been prescribed what all GPs give to their patients in the first instance. I asked to be referred to an OP specialist and see a doctor in the endocrinology department of my local hospital. I am happy with this arrangement.

DJR1 profile image
DJR1 in reply to Kaarina

Yes falls prevention is an important area. The University of Manchester did quite a lot of work on this. One of the leading causes of falls in the home was badly fitting footwear particularly slippers. Dangers from loose rugs, legs on furniture etc. If might be worth exploring if there are medical reasons for falls too.

Nanaedake profile image
Nanaedake in reply to Kaarina

Thank you Kaarina for all that information. I will ask reception for a copy of the DEXA scan report. I didn't realise that there was another report other than the letter I recieved. It might help me re-plan my exercise routine.

I got my own Vitamin D blood test done before I knew about the osteoporosis and then started supplementing with my own vitamin D3 about 4 years ago but my GP has now done a test and my vitamin D was 110nmol. I've now been prescribed a maintenance dose of D3 and calcium so I'm taking that.

Our local endocrinology dept is about as much use as a pocket handkerchief. I saw an Endo who said he didn't know why I'd been referred. Well, I didn't ask to be referred, I was referred by a consultant. The Endo just dismissed me.

I think falling does need to be addressed and I insisted on physiotherapy after the last fall as nothing was offered after my first 2 fractures. I asked about a DEXA scan as I have risk factors. One hospital doctor laughed at me, the other said it wasn't necessary and one grumbled to ask my GP. It wasn't until I saw a new GP that I was sent for the DEXA scan, thankfully.

I think it's a good idea to see an Osteoporosis specialist and I'll discuss that with my GP.

I'm doing exercises the physio gave me and also yoga twice a week, swim once a week and go the gym once a week. But now think I need to do more weight bearing exercise as DJR1 suggests.

Kaarina profile image
Kaarina in reply to Nanaedake

Hi Nanaedake,

Any exercise is better than none but weight bearing appears to be the way to go. I walk every day, I wish I could say it is a brisk walk but it is not particularly and as I have a tendency to fall or have had in the past, I know my limitations and if I went any faster I would more than likely fall and as that is exactly the opposite of what I want to do, I go at a pace that suits me. Some days I feel I can walk faster than other days. We also have to find the exercise we do enjoyable, that is important, at least to me it is. I do a little tai chi at home most days and enjoy this. I used to attend a class and unfortunately it closed and I have not been able to find one quite like it. Two years ago I joined a walking group run by the council and there is a choice of the long/short walk. I do the latter and find this enjoyable and one morning a week is set by for this. I walk to the venue where we meet and also do a circular walk of the park beforehand so get a good step count that day, for sure. We go to the cafe after too which is nice. Optional of course. ;)

Marziano profile image
Marziano in reply to Kaarina

Kaarina, I hope is not too personal, but why did you ask to be referred to an endocrinologist? Also, would you advise any newly diagnosed to see an OP specialist, even if they do not want to take medications yet?

Kaarina profile image
Kaarina in reply to Marziano

Hi Marziano,

I did not ask to be referred to an endocrinologist. I asked my GP if he would refer me to someone specialising in osteoporosis soon after I received my DEXA report and he referred me to the endocrinology department at our local hospital. The doctor I see there twice a year was actually the person who prepared the report of my DEXA in 2015. I found this most interesting to hear. I look forward to my appointments with him and find them beneficial.

I did want to continue to take medication which was strontium ranelate when I asked to be referred although on my report it said I could discontinue taking it and my GP stopped my prescription. After chatting to the doctor at the hospital he agreed I should continue with this medication. SR was withdrawn last August and the doctor suggested I start on Prolia. When I next saw him I said I had decided not to take it because of the possible side effect of joint pain which I have daily anyway due to osteoarthritis. He agreed with me and also told me that on stopping Prolia after 2-3 years there was the possibility of rebound Vertebral fractures. I now see him although I am not taking any OP medication.

Marziano profile image
Marziano in reply to Kaarina

I am seeing a rheumatologist next week, for other reasons. I think they too deal with osteoporosis but I think they believe in treating everything aggressively and I am not ready to start any medications at this point.

Jennifer7 profile image
Jennifer7 in reply to Kaarina

I have had four Prolia injections at the recommendation of an endocrinologist...After reading a number of forums and finding out about the horrible side effects I have decided to stop the injections.She didn't try to persuade me to carry on...which says a lot.She has put me on Alenondrate but I am loathe to start it ...I will have to though,to prevent those fractured vertebrae we are threatened with when we stop Prolia..A very knowledgeable chemist I Manchester told me to eat right prunes a day,which I am doing.He also said vitamin K2 is absolutely ESSENTIAL when taking vitamin D...Spinach..kefir and almonds have also become a part of my daily diet..A friend raised her DEXA results by rating two egg whites a day.....I only like them with the yolk so I am eating six eggs a week....Not much time for anything else after all that!!So glad we can share our experiences on here..Good luck to everyone and let's hope we will get som responsible help soon.x

Fran57 profile image

Hi. I too was diagnosed a couple of months ago and there has been great advice and reassurance on this site.

I was ( am still) quite devastated and shocked.

I have done a lot of research because I don’t think the medication prescribed is a good idea ( for me, at least) and have discovered that lots of us have something called Hyperparathyroidism- well worth researching because if you do have this, the medication will make no difference at all.

I asked my GP to check my parathyroid ( nothing to do with the thyroid) hormone levels and I am slightly raised. In this case there is a small op to be done and then your bone density improves to the same degree as it would by taking medication, without the side effects.

I am seeing an endocrinologist towards the end of February to see if he can operate.

Please, everyone, get your parathyroid hormone levels checked or at least research it.

Take care.

Fran 😊

Met00 profile image

Hello Nanaedake. I'm sorry to hear that you've been diagnosed with osteoporosis and know how much of a shock that is, particularly with the news coming through the post like it did! However, I'm glad to hear you're going to ask for your T-scores, as that will give a much better idea of your bone density and potential associated risk. A T-score above -1 is normal bone density, between -1 and -2.5 is osteopenia, and below -2.5 is osteoporosis. It's also worth noting that if you have a 12% risk of a major fracture in the next 10 years, that means you have an 88% probability of not fracturing!

It sounds like you've had a bad experience with the NHS, which unfortunately seems to be all too common where osteoporosis is concerned, with some parts of the country faring worse than others. It's worth having a good read of posts on this forum as there's a wealth of information and experience which might help you to make up your mind about taking Alendronic Acid. The jury seems to be out on that (and other bisphosphonates), but GPs are told to prescribe AA, Calcium and Vit D3 as a matter of course as soon as osteoporosis is diagnosed. It's worth bearing in mind that with long term use the medical profession acknowledge bisphosphonates may cause problems (for example, unusual and sometimes unexplained bone fractures) and the time period considered "safe" for taking this medication has been reduced to a maximum of 5 years and some would say no more than 2-3 years before taking a break. Bisphosphonates work by preventing the breakdown of old bone, which results in reducing/removing the trigger for the body to build new bone. Consequently the denser bone that results is not necessarily stronger. I have a t-score in my spine of -3.2, but after a year of taking bisphosphonates decided I couldn't tolerate the side effects (among other things, my IBS was worse) any longer and wasn't happy with the uncertainty about the medication's effectiveness. However, despite what I've just said, there is evidence that you're less likely to fracture if you take bisphosphonates, at least for a few years, so this isn't an easy decision to make and will depend on your own individual understanding of the relative risks of taking or refusing the medication!

Just one final thought. I don't believe that it's impossible to reverse osteoporosis as there is evidence that this CAN be done through appropriate diet, supplements and weight-bearing exercise. In fact a recent study showed that those with low t-scores can improve these through properly supervised weight-training exercise:

Nanaedake profile image

Hello Met00, Thank you very much for taking the time to respond. Yes, it was a shock but I've known something was wrong, just didn't have a clue what it was. It's just not normal to break bones so easily. I'm in my 50's which doesn't seem particularly old to have bone problems. As far as I know my it's not in my family history.

I've been reading through the articles on high intensity exercise and tody I've booked an appointment with a trainer at our local gym to review the exercises I'm doing to protect my lower back but also to add in some useful strenthening starting very gently. It sounds hopeful that there are things you can do to help yourself. I'm still undecided about Alendronic Acid but will chat it through with my GP.

I'll find out what my T-scores are tomorrow hopefully as I'll drop into the GP reception. It might take them a few days to organise printing it out though. Thank your for explaining about bisphosphonates. I guess the thing is to encourage the body to grow new bone as much as possible so I'll look into that too. I shouldn't complain about the NHS, some people like the new GP have been very helpful. It's just sometimes feels like ploughing through treacle and our area seems very old hat.

MiaLee profile image

Do a lot of reading before you accept this diagnosis. The scans themselves have been repeatedly called into serious question regarding their validity. Also the drugs are very scary. Search some of the opposition regarding this wholesale selling of sickness to women in order to push dangerous drugs. Check out some of my posts where I do put some of those articles out there. You owe it to yourself to be very careful regarding this whole ‘new epidemic’ of almost every postmeno and peri menopausal woman as osteoporotic, or as having the newly made up ‘disease’ of osteopenia ( made up by the same companies that make the drugs, make the bone scanners, and set the standard for what would constitute risk of fractures.) There have been many prominent professionals that have spoken out about this. Read. Search; think carefully, before you go down this rabbit hole. All the best.

MiaLee profile image

And this:

The history behind Osteopenia and bone mineral loss is all based on a marketing plan concocted by Merck. They created the boards who arbitrarily came up with the levels of mineral density. Those have never been causal in actual fractures! These links expose the history of yet another fake disease:

Hi there . So I think strong bones is not just popping a pill - its a strong diet especially eating greens plums fruits dairy meats everything healthy and of course do weight bearing exercise . I like to wear a vest by nyk they make a special one for osteoporosis patients it is moderately weighted but enough wt to strengthen bone -( unlike other vests geared for muscle men) this one is for us and it looks cute and is very comfy (no weights over your bustline )

see not expensive either you should see results in a yr

HeronNS profile image
HeronNS in reply to

This is rather an old thread. the problem with nyk vest is the weights (1/2 lb each) are a little heavy for very vulnerable people to add. The hypervest may not be "cute" but the weights are only 2 ounces so even a person who has sustained fractures is able to gradually add this tiny amount.

in reply to HeronNS

No not so NYK vest is ADJUSTABLE so you carry as much as you want that is t;he beauty you Never strain and it does not have weights on the bustline like all the others which are made for muscle men so they dont work for women and women need a vest to strengthen bones one that does not look insane so you can actually go out in it.

hyper vest is for guys

HeronNS profile image
HeronNS in reply to

The website said the individual weights were 1/2 lb each. This is probably fine for many people, but not for everyone. And no, I don't go out unless I can wear something over my hypervest ;) , but it is really comfortable and I love it.

in reply to

I can wear mine out without hiding it under a jacket but if I want I can also wear a jacket over it and being a breast cancer survivor I lov e the nyk vest as it has no weights stabbing me in the chest area - this vest is designed for women not men love that!! nykweightvest thought of everything!

JohnHoltt profile image

I get sad when I read such stories because they directly affect me. My sister suffers from this disease, and the worst part is that there is no cure for it. The only thing you can do is protect and strengthen your bones. I am researching a product, Ligandrol, that strengthens the bone system and studying ligandrol side effects It is a supplement that is recommended, but not in large quantities. It is not a very natural product, and the one who consumes it assumes the consequences himself.

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