Osteoporosis diagnosis & feeling as though dr ... - Bone Health

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Osteoporosis diagnosis & feeling as though dr not helping.

Barberdiane profile image
38 Replies

It’s 6 weeks since my mri and I had to wait 2 weeks for a phone appointment with my gp to tell me I had osteoporosis moderate to severe and it would impact my life, she said she’d speak to a spine specialist and organise a dexa scan, a week ago the gp receptionist rang to arrange another phone consultation to discuss scan results, I’ve not had the scan, she phoned back saying there’s a huge backlog so I’ll just have to wait, this is fine, I totally understand but it’s now 6 weeks since diagnosis and the dr hasn’t suggested or prescribed anything I should be taking, I’ve started myself taking vitamins A, D3 & K2, and some OsteoCare supplements from Holland & Barrett, I’ve researched and joined the Royal Osteoporosis Society but I feel very let down & left alone with no info from dr at all, it’s making me wonder about changing surgeries tbh. Am I being over sensitive or do you think it’s negligent of the dr to just leave me with no info or treatment for 6 weeks? Thanks

38 Replies
Jennymary profile image
Jennymary

Join the club, I had a DEXA scan in 2014 after breast cancer treatment, after the scan I had a letter, moderate risk of fracture no need to do anything just have another scan in 5 yrs. Last year went to GP for referral, during the consultation she casually said oh you've got a T score of - 2.4 and when it's - 2.5 you've got osteoporosis, had a scan last year, few weeks later, osteoporosis in my spine, here's some tablets....

I'm not taking them due to the awful side effects, I asked, and got, a referral to see a consultant, this happened in February, he scratched his head and said I don't know what to do for you, had a couple of blood tests and a back xray, the one thing he has done is taken me off Tamoxifen and put me on a similar tablet which is supposed to strengthen my spine. No advice, leaflets absolutely nothing, have joined the ROS, at the hospital they weighed and measured me, I've always been over 10 stone and about 5ft2, now under 10 stone and less the 5ft and consultant doesn't seem to care, so I know exactly how you're feeling right now

Barberdiane profile image
Barberdiane in reply to Jennymary

Oh honestly it’s just not right is it? What are they playing at, these are people’s lives, I don’t think I’d have got the mri if the physio (what I’m paying for!!) hadn’t suggested I tell dr I needed, went to physio last week & he said dr should be starting me on something as the dexa scan isn’t going to change the mri results. I’m now paranoid of falling or tripping!

Jennymary profile image
Jennymary in reply to Barberdiane

I know what you mean, I've had to reconcile myself that even if in 2014 I'd been told I had one foot on the edge of osteoporosis land this still may have happened. On a similar vein I was born with an eye condition called glaucoma, well controlled with drops for over 40 yrs, had successful cataract surgery December 2015, due to an unfortunate series of events I now have no vision in the eye that had the surgery and in October 2017 was registered blind because of it, so I've had to accept this was always going to happen, but it's happened in a really bad way for me

Fruitandnutcase profile image
Fruitandnutcase

Really sorry to hear how things have been for you. The ROS website has a lot of good information and you can call and speak to their nurses if you need to as well. Lots of good information on diet and gentle exercises you can do.

Your are right to take D3and K2 etc. while you are waiting. Would it be possible to have a telephone consultation with someone at the hospital who did the DEXA scan? It might be worth seeing if that can be done although when I had a problem recently my GP just said ‘the hospitals aren’t taking any referrals’.

I was the opposite to you, broke wrist at start of January, had a DEXA scan and blood tests while I was still in plaster and had seen a fracture liaison nurse and was started on alendronic acid, calcium and D3 by the end of February. It was very fast.

My doctor had no input apart from a receptionist phoning and telling me I had osteoporosis! That I needed blood tests but they weren’t sure if it was them who was to do them or the hospital! So I collected a request form and took it to the hospital and had it done there because their phlebotomists are amazing.

Barberdiane profile image
Barberdiane in reply to Fruitandnutcase

I’ve not had dexa scan yet, backlog due to corona! I was distraught at first, but I’ve settled down a bit now! Just shocked as I’ve been a hairdresser all my working life & it’s come asa shock!! I’m eating veg & fruit like it’s going out of fashion, and yogurts etc!

Fruitandnutcase profile image
Fruitandnutcase in reply to Barberdiane

It is a horrible shock isn’t it. Definitely a club no one wants to be a member of. Same here with the green leafy vegetables, Ive never drunk much milk and I hate the texture of yoghurt but I’m like you at the moment and I’m topping up with oranges, figs, seeds and all sorts of things from the ROS list.

Your physio is right though, the DEXA isn’t going to change anything and D3 and K2 are good to take. If you look on here you will see other things that people are taking that you could take as well.

My Pilates teacher is a physiotherapist and the group I’m in is specially for people like me with osteoporosis- we do lots of work on balance etc. I do Nordic walking and I like having the poles - they are good for extra balance although you don’t really lean on them, they sort of take the weight off your joints, they give you a whole body work out and they keep you upright which is important.

Barberdiane profile image
Barberdiane in reply to Fruitandnutcase

I’m struggling with pain though if I’m standing, can only manage to stand 5-10 mins then I’ve to sit but obviously that’s the disc and the stenosis, I’m sure when they’ve mended a bit things will improve

Fruitandnutcase profile image
Fruitandnutcase in reply to Barberdiane

It’s very hard isn’t it. Hope you can find something to relieve your pain soon - could your physio recommend something or get your doctor to come on end.

Met00 profile image
Met00

First of all, how did the doctor diagnose osteoporosis if you haven't had a DEXA scan? Have you had a fragility fracture (one that occurs without any significant impact, for example falling over from standing height)? If so, that would certainly indicate osteoporosis, and the MRI scan may have revealed fractures. However, the usual diagnostic tool for osteoporosis is the DEXA scan. I wouldn't rush to change doctors, unless someone can recommend one who knows about osteoporosis, because the majority seem to be fairly ill-informed. I also wouldn't worry that you haven't started treatment yet, as bones decline fairly slowly, so nothing much will change while you wait for your DEXA scan. Of course, if you can afford it there's always the option of going privately if you want to get it in quicker. If you have had fractures, the important thing at this stage is to make sure you know how to minimise the risk of future fractures, which means doing balance exercises to reduce the risk of falling, being careful about lifting, and ensuring you don't bend your spine forwards - keep your back straight and bend at the hips and knees. Be cautious about taking Vitamin A as too much is thought to be as detrimental to the bones as too little; usually it's possible to get sufficient through diet alone. Ask your GP for blood tests to rule out underlying causes of your osteoporosis, including parathyroid (most GPs don't seem to realise it's essential to test that), Vitamin D and calcium; ideally your GP should also do a full blood count in addition to these.

I don't think you're being in the least bit oversensitive, as we all find it a huge shock to be diagnosed with osteoporosis, even more so when a doctor goes on to say it will impact our lives (implying in a negative way). I would say my quality of life has improved! I was diagnosed almost 6 years ago, my GP was useless, but in time I did a lot of my own research and as a result am healthier all round than I had been previously. Yes, it's impacted my life, but in a positive way - I now eat healthily, exercise regularly, take a range of helpful supplements, and my blood pressure has dropped to near the bottom of the normal range!

Barberdiane profile image
Barberdiane in reply to Met00

Thanks for your reply, I put my back out lifting and physio said it was a bulging disc and the mri reported that plus multiple fractures to back plus stenosis of the spine, though I have to say my dr was surprised by osteoporosis and she said she’s not 100% convinced but surely if it’s shorn on mri? Also I’ve a relative lives in Munich & works for a consultant who looked at mri report & said more or less same as dr! I’m now waiting for my images to be emailed to me so I can send them the guy in Munich. In the meantime I’m taking Naproxen and tramadol which I’d like to get to a point where I no longer need them.

Met00 profile image
Met00

Could they tell the age of the fractures? Have you ever been in an accident that might have caused them? Someone posted the other day about MRI scans showing tiny fractures that occur when toddlers are learning to walk. I've never heard of that, but it was a consultant who said about it. Protecting your discs is much the same as protecting your vertebrae. You need strong tummy muscles (core) and avoid bending your back forwards, careful lifting etc. I had physio after a slipped disc, found it very helpful in terms of how to protect my back. Apart from that, gradually increasing walking helped.

Fruitandnutcase profile image
Fruitandnutcase in reply to Met00

That was me 😊 when I finally get to see the ultrasound guy up in Northampton I’m going to try and remember to ask about that. Yes, nothing like a good strong core.

Barberdiane profile image
Barberdiane in reply to Met00

I lifted a reception desk and felt my back ‘go’ so just assumed that’s all it was, physio said it’s going to take 6-18 months for it to heal and it’s now 6 months, physio wanted mri to confirm the bulging disc, which then showed up the old fractures and the osteoporosis & stenosis, he’s given me some gentle exercises to do to try and open the spinal stenosis, he recommends I see the spine specialist too but when of if that’ll happen who knows!

Barberdiane profile image
Barberdiane in reply to Met00

Is it possible to tell the age of fractures? My mri report does say some old fractures

Met00 profile image
Met00 in reply to Barberdiane

I don't know. But it's maybe something you could query?

Sunseaandsand profile image
Sunseaandsand in reply to Barberdiane

Fractures will generally heal in six to eight weeks.

So when seen on the MRI, if healed they will be reported as old fractures.

It is not possible to tell when the fractures occured either by x ray, mri, or dexa scan.

The MRI can show the bones have thinned but will not say as to what degree, that is why you need a dexa scan.

I have had 2 new fractures in the last 10 week and at the moment am not able to have my dexa scan or other tests because of Covid 19.

This is really difficult but it is out of our control and we have to be patient, the measures have been put in place to protect us.

Met00 has given you good advice to follow, steer clear of any steroid medications as these do reduce the density of the bones.

Fruitandnutcase profile image
Fruitandnutcase in reply to Barberdiane

Well the guy I saw said mine were very old and dated back to early childhood that was his explanation. He was very well qualified, top of his tree so to speak so I’ve no reason to think he was talking rubbish.

Charlie50 profile image
Charlie50

Keep in touch with ROS nurse Helpline they have been really great... GP will be looking for Rheumatologist to prescribe I imagine that's how it usually happens.... pain relief should be available from GP, it really is unprecedented times, & I like others & yourself feel like we've been put on the 'back burner... guessing this is going to be for a while then dependent on health authority when & how services open.... keep eating healthy & taking vitamin D take care you're not taking too much...may be worthwhile speaking to GP when you have further information from ROS or suggestions from here.... take care.

karmel profile image
karmel

Unfortunately, I think you will find that a lot of us have felt that the dr has not been very helpful. When I had my dexa I was advised to ask the doctor for a Vit D and Calcium blood test. I asked the dr and she just ignored me and gave me a prescription for AA, didn't explain anything about the medication or give me any advice. I was really grateful for all the practical help I got on this forum.

Fruitandnutcase profile image
Fruitandnutcase in reply to karmel

That is appalling. Thank goodness for healthunlocked.

Barberdiane profile image
Barberdiane in reply to karmel

That’s just not fair though, they should be listening to you, it’s your body you need to know every step, I’m not liking the sound of calcium because doesn’t it affect the heart?

Fran57 profile image
Fran57

Hello. I can imagine you are feeling pretty fed up. I know I was totally shocked when I was told I had osteoporosis! I was terrified of moving!

I know everyone is different, but please do ask for a blood test to check your parathyroid hormone levels ( this is absolutely nothing to do with the thyroid, the glands just sit near it in the neck.

I did loads of research when I was told about the osteoporosis and discovered I ( and lots of people have this...GPs don’t always know about the connection) had hyperparathyroidism. This is something that can cause osteoporosis, without any symptoms whatsoever and it can be sorted.

I refused any medication (thank goodness) and did my research.

When I asked to have my parathyroid hormone levels checked I found that I needed a small operation ( I had never had an op in my life before!) and the surgeon told me that all the time I had this condition, I could have taken all the medication for osteoporosis and it would have made absolutely no difference, and would possibly have made it worse. He said I did exactly the right thing in refusing it.

Anyway, I had the small operation and my levels were so much improved, a few minutes after it...

I now have to have a repeat DEXA scan next year ( he advised waiting about three years, because then my bones should be at the best they can be, and we shall see what difference it has made.

I know there is no absolute guarantee, but along with a good diet, which I had anyway and exercising ( mostly walking, which is not so much fun during coronavirus 😟), I am praying this will have made a difference.

I am not saying that you have hyperparathyroidism, but for the sake of a simple blood test, it would definitely be something to rule out.

Take care, and let us know how you get on.

Fran (UK) 😉.... now, if you could just come and sort out my hair...😂

Barberdiane profile image
Barberdiane in reply to Fran57

Wow I definitely will ask for that, when I finally get to speak/see a dr! Yes I’m almost scared of moving, I’m slightly paranoid, I feel if I could get my back pain free I’d feel happier but the thought of endless pain due to the bulging disc, fractures and stenosis is awful, I can only stand for 5-10 minutes, I’ve had to stop hairdressing as I just have no chance of standing long enough to put foils in or even do a cut. Physio has said my back will take 6-18 months and I’m at 6 months now so I’ll persevere. I really wish I could come sort your hair !!!

Barberdiane profile image
Barberdiane in reply to Fran57

Have you still got osteoporosis or had it reversed now?

Fran57 profile image
Fran57 in reply to Barberdiane

Hi. Oh bless you. I know what back pain is like, but I’ve not, to my knowledge had a bulging disc... I had sciatica, which I used to think was “just backache “ when others talked about it... oh, I was so wrong!

We have a local hospital which you can (pre coronavirus) call and refer yourself for physiotherapy. They helped me enormously... I didn’t know then that I had osteoporosis, and I still do some of the exercises they recommended, especially when I get the odd twinge. I remember being too frightened to move at first, because I thought I would be doing more damage ( and, of course, you must get medical advice), but the physio was so helpful.

I am sure I probably still have osteoporosis, but I’m hoping when I have my second DEXA scan (and I believe that is the only way to know for sure), that it will have improved a fair bit. If not, I don’t believe I’ve lost anything, because it was important to have had the hyperparathyroidism sorted and I cannot foresee, at the moment, any time when I would take the medication that was offered... but it is a very personal choice; we are all different!

I’m so glad you will look into hyperparathyroidism, because it’s worth a check.

I hope that helps,

Fran 😉

veriterc profile image
veriterc

Get yourself to a good Rheumatoligist immediately. I had GP who told me nothing could be done; luckily didn't listen to him. I was so cross I wrote aftercancers.com/watch-out-... which (blush, blush) has been highly recommended by a top surgeon. Good luck - you will have to fight!

Barberdiane profile image
Barberdiane in reply to veriterc

Oh gosh how will I do that? Do you think a dr will just refer me? I’ve no intention of taking anything if I don’t have to, I’m destined get off the painkillers but not a chance yet.

veriterc profile image
veriterc

What I did - and hopefully it will work for anyone else because I was following the NHS rules 1. I made a list of bullet points (go back to my Osteoporos article and you'll find them in there), 2. Ask Royal Osteoporosis Society for names of Rheumatologists/Consultants in your area. 3. Check on their names, see who are easily accessible, etc 4. Go back to your GP and ask them to refer you. Under NHS rules you are allowed to do this, but if he/she proves sticky, I find that phoning the Consultant's Secretary, explaining the problem to them will get an appointment. And good luck. But get yourself seen by a good 'bloke'. It's incredible what can be done. Oh - and let us know what happens; it would be good to add a 'Case Study' on aftercancers.com to help others!

Barberdiane profile image
Barberdiane in reply to veriterc

Thanks I will try.

joanne33 profile image
joanne33

Hi

I've told my story on here before - but my osteoporosis came to light after being treated for 2 years with (infected) multiple bilateral kidney stones. Nobody bothered doing the simple blood test at the time which would have shown I had hyperparathyroidism, (I had an adenoma on the parathyroid gland - this made the gland mess up its job of regulating the amount of calcium in the blood - so taking extra from my bones and subsequently filtering it through the kidneys, causing stones).

After I read about it (after some time) I requested a Vit D and calcium blood test from my

GP - it showed an incredibly low D score and a very high calcium.

If the adenoma had not been discovered with the simple blood test - and removed - my kidney stones as well as osteoporosis would have carried on getting worse - it's essential that anyone with osteoporosis should check this.

I had the adenoma removed and a couple of years later - as others have suggested is normally the case - my osteoporosis was much improved - although I'm still just in the range.

After reading all the horror stories on here I'm very relieved that I never had any treatment for the osteoporosis.

Barberdiane profile image
Barberdiane in reply to joanne33

Well I am wondering if I have to start on treatment because reading things is putting me off tbh! I’d rather ask if have a go at doing things naturally through diet & exercise etc, would it have disastrous affect if I didn’t have treatment do you know?

joanne33 profile image
joanne33 in reply to Barberdiane

You're the only one who can make that decision - but at the moment you don't have all the information you need. You need the blood test as Fran says (vitamin D and calcium levels at the very least) and Dexa scan results. Meanwhile research what you can (including various treatments so you have the knowledge ready)- there's so much information on this site for a start! - put yourself on the healthiest diet for your bones and take what supplements you think would help - I take quite a few supplements, although I try and get most of my calcium from diet. Lots of gentle weight bearing exercise - You Tube have some good yoga/pilates exercises specially for osteoporosis - be careful to do only the ones for osteoporosis!

Good luck - but try not to worry too much - that's no good for you either! Lots of lovely people on here to help you all the time, and as Met00 says, she's improved her life enormously through doing all the right things, you may feel the same given a little time!

sweetsusie profile image
sweetsusie

Well..I'm sorry it's such a long wait for you...but I'm glad in one way, because the doctor will prescribe one of those awful bone meds for you. Please research them before taking!!! The side effects are life-altering and terrible, as you will find out once you look them up and read some of the horror stories. You're doing well just taking your vitamins, etc. You'll get a lot of interesting advice on this page about how to keep your bones semi-healthy (at least) with nature, benign treatments!

Barberdiane profile image
Barberdiane in reply to sweetsusie

I believe you’re right, I’ve never been one for taking anything, I’ve all on to take paracetamol and now I find myself on bloody Naproxen and tramadol!!!! I have no choice but to carry on or i’d be unable to move and in dreadful pain. Seriously contemplating the proper cannabis oil, I have a contact via a friend who’s actually cured himself of 3 different cancers through taking it but that’s another story!! I’m going to give it my all in research and hopefully change my lifestyle with diet and exercise. Any tips on where to properly research the meds gratefully received!!!

sweetsusie profile image
sweetsusie in reply to Barberdiane

Go to the top of this page..you'll see a search bar area to the right of the page...type in osteoporosis drugs...that should bring up many posts about these drugs...good luck!

Newchapter_19 profile image
Newchapter_19

' Am I being over sensitive or do you think it’s negligent of the dr to just leave me with no info or treatment for 6 weeks? ''

No, you're not being sensitive

Yes, your dr is being negligent, you run a high risk of compression fractures which are quite painful and will impact your life.

Last summer I was given a diagnosis of osteoporosis through a bone density scan . I'm 57, I now firmly believe it was caused by being on lasix and a beta-blocker for more than 2 years...I no longer take either as I never needed them to begin with.

Then I began waking up with back pain almost severe and it was starting to impact my life and making my job impossible to do (I do a lot of standing and walking)

Late last December was when I fractured my vertebrae in 2 places while helping to lift furniture (with a couple of people) which was not even very heavy....so 2 compression fractures in my L1 and L3 region as was seen on an MRI . In early January I had vertebroplasty and they have since held up pretty well.

But in the months to follow I continued to have pain...it went from mild in April to severe in May. My neurosurgeon sent me for another MRI and it found a new fracture in my L2 vertebrae plus a herniated disc on my mid-thoracic area, multiple disc bulges and degenerative sacroiliac discs. Now I haven't been able to work since late last month and am awaiting another vertebroplasty, not sure about the herniated disc as I don't want to have anything for that if it means more surgeries...I've heard too many bad stories.

My story is long but I will say that I have spent the past 3 months researching the causes of osteoporosis. I was taking calcium tabs and discovered years ago that they may do more harm than good and they're of little to no benefit in preventing fractures, according to an article from John Hopkins University. They're linked to kidney stones and calcium build-up in the arteries. I started calcium and Vitamin D3 when I was in my mid 40's but stopped calcium 5 years ago, stayed on the Vitamin D3. But last fall my primary dr insisted due to the osteoporosis and said just 500 mg a day, so I listened and followed her advice ... stopped 3 weeks ago and am now taking a algae/plant-based supplement. I'm also trying to eat more calcium rich foods, almond milk and leafy greens,etc. Food is probably the best way to supplement.

You mentioned also about changing surgeries, which surgery are you about to have (if you don't mind me asking)?

Please be careful, gentle exercise, no heavy lifting.

Barberdiane profile image
Barberdiane

I meant gp surgeries! I’m veering towards saying that I want 12 months to attempt to change my life without meds. I’ve lost 1 stone 4lb by changing diet so I’m going to carry on with the leafy greens and plenty of fruit, dairy etc

lgd333 profile image
lgd333

Sorry to hear the distress you are going through. Firstly, how can the doctor diagnose osteoporosis without a Dexa scan? I had a lot of back pain and was sent by my doctor for physio which made my back worse. Due to epilepsy medication and being on HRT for several years, I did a search on Google to find out more information. I then requested the Physio to do a report requesting a Dexa scan. I was diagnosed immediately after a dexa scan and the hospital staff in question gave me a letter for the doctor to get a prescription for Risedronate Sodium which I have been on since. I joined My Osteo Team (a social community) and also Royal Osteoporosis Society where I found out more information.

I was also taking Adcal-D3 then stopped taking it due to chewing the tablets and allergies. My doctor immediately told me you must be on Vitamin D which has now been dispensed.

Find another doctor if not happy, or perhaps go private and pay that little extra to get a result quicker!

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