I’ve just been diagnosed with osteoporosis and I’m 29. This came about as I realised my toe was broken but didn’t have a clue how it happened so went to A&E. They x rayed it said it was fractured and also said my foot density looked on the lower side and to follow up with the GP. I did that and she said although she thought it would be nothing she would refer me for a DEXA.
Had the DEXA and doc has said I have osteoporosis and said she’s shocked. She said she would understand if I was 70 but said seeing the way it is now is concerning and has referred me to rheumatology. I have no family history and have no known factors that explain what could have caused this. Vit D levels are fine.
I read OP doesn’t cause pain, but for a long while now I have been in a lot of pain all over my body. Particularly my joints and my back is quite bad.
Doc wants to put me on alendronic acid but after reading about this and it’s side effects , I’m really reluctant to go on it.
Any advice would be much appreciated , particularly from those of you who have been diagnosed at an earlier stage, as I have been repeatedly told ‘it’s very rare’ to have this at my age.
Thank you all x
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Ms28
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Hello. I’m sure you must be in shock… I know I was, when diagnosed at 60! Take your time and do some research before you make any decisions.😉There will be lots of advice here. I did lots of research and decided against medication, but everyone is different.
My most important piece of advice is to ask your GP to test for hypo parathyroidism… just an easy blood test. You have 4 parathyroid glands…. NOTHING to do with the thyroid, they are just situated near it. It is possible ( it was with me!) that there is a problem there. I saw a specialist and he told me it didn’t matter how much medication I took for osteoporosis, it would make no difference!
I had a very small operation ( my only ever operation) and avoided taking what, in my opinion, and the specialist’s , is not very nice medication.
Hello, sorry to hear this. I had it diagnosed in my early 30s though I did already have Reumatoid arthritis. Important to get tested for celiac disease as minerals don't get absorbed so well. Blood tests are important. There are alternatives to AA if you find you can't tolerate it. Lots of luck.
The son of a friend was diagnosed with osteopenia a few years ago when a friend ran up behind him and gave him a bear hit and broke a rib. He was probably slightly older than you but still only early thirties.He was sent for physiotherapy and a weight bearing exercise programme plus dietary advice. The idea being (I think) that he does enough work to stop his bones getting any worse.
He was never an active child or teenager and I know that his diet was always very poor. He was always a really fussy eater as a child and didn’t eat the kind of foods he needed to build bone. Fortunately he never smoked and I don’t think he was a heavy drinker. He was never offered bisphosphonates though and his doctors seemed to think his exercise programme plus diet and vitamins would work for him.
Before you think about taking drugs make sure your doctors test for secondary osteoporosis causes, such as:
Rheumatoid arthritis and other inflammatory arthropathies.
Prolonged immobilisation or a very sedentary lifestyle.
Primary hypogonadism (men and women).
Primary hyperparathyroidism.
Hyperthyroidism.
Post-transplantation.
Chronic kidney disease.
Gastrointestinal disease such as Crohn's disease, ulcerative colitis and coeliac disease.
Untreated premature menopause (<45 years) or prolonged secondary amenorrhoea.
Type 1 diabetes mellitus.
Chronic liver disease.
Chronic obstructive pulmonary disease.
There is no point taking osteoporosis meds if your osteoporosis is caused by another condition that hasn’t been fixed first.
Thank you for such an informative and detailed reply. What are the chances of getting GP to actually look into these things? I feel like they just about gave me the DEXA.
Also, thank you so much for the osteoscan info, I’ve booked one for a couple of weeks. This sounds like a silly question , but does it only show osteoporosis?
I imagine you will probably know if you have some of the conditions listed above.
I knew I had had Graves Disease - autoimmune overactive thyroid, also knew I had inflammatory arthritis, I knew I had been given steroids for the arthritis and also at one point I’d been given an unlimited supply of PPIs.
After I broke my wrist the hospital wrote and told my doctor to test for some of the other conditions - vitamin D levels, calcium, hyperparathyroidism, coeliac, diabetes so I imagine you should be able to get those tests done.
I don’t think the OsteoScan shows anything other than the condition of your bones. I imagine it is Nick Birch you will be seeing and he is a very nice man, he is very reassuring and will explain everything to you - I’m sure you will find him helpful.
I was diagnosed with osteoporosis at 29 I had osteopenia when I was 18!!! However I refused the medication due to side effects and I already had gastric problems so I didn’t want to make it worse.
I fractured my hip at 24 just from running (not even very good or very much but it snapped from the impact) I was still only osteopenia and again didn’t want the medication however at 29 they found it had developed to osteoporosis again I refused medication and in 2020 I broke all of my ribs on both sides from falling out of a bed and it was/is still horrific I wouldn’t want anyone else to go through it I promise you the ribs really shocked me. However again I was still scared of the medication but last October I finally started on the zoledronic acid I didn’t enjoy the initial side effects but they do pass and it’s just one iv a year for 3 years so I’m glad I did it now just a shame I went through a lot of pain first.
I had no explanation why I had it so young either xx
It seems too many doctors won’t investigate the cause of osteoporosis which should certainly happen when a young person is the patient. Just too easy to medicate! The advice that tells you to find out the cause is the best advice and a list has been provided. See Fruitandnutcase.
Thank you for all your replies. It’s really comforting to know that there are others on this journey too, particularly those with a lot more experience with this.
So I got told over the phone after simultaneously getting an internal ultrasound scan for endometriosis and adenomyosis. The doc said both conditions have worsened and that I may need a laporoscopy and subsequent ‘managing meds’ (I’ve had these issues for years and was diagnosed at 18 , pumped full of meds which didn’t solve the issue but caused many side effects again).
So whilst telling me those conditions have worsened, she proceeded to tell me about the OP. I asked her if it was bad she said yes and she’s ‘very worried about me’.
I know the NHS is strained right now and from what I’ve seen it’s quite hard to get investigations done, but like you’ve all suggested , I really want to try and find out if there’s more to this. My joints are always so sore and they click and crunch. I would say I’m relatively active and my BMI is in the normal range.
I really want to avoid the AA meds if I can so hoping that I can make more holistic changes to help this. However, I’ve been told by some that if I don’t take it, I risk having a considerable decline in my health and I have two young children to take care of.
Being told this over the phone and coupled with the other news of my scan was quite overwhelming. I’ve been feeling confused lately in regards to if it’s right for me to be feeling so low after this diagnosis. I wonder if anyone else felt the same? In some regards it was a relief because I knew the level of pain I had wasn’t normal (albeit I was use to pain from the endo and adeno so at times it was confusing).
Apologies for the essays, but I really appreciate your responses and guidance ☺️
I felt really low after my diagnosis - a couple of years ago I fell off my bed and landed about a metre or so away from the bed on a wood floor, it all happened in the dark- my bedroom was totally blacked out - so I had absolutely no idea of what happened - I ended up with both bones in my wrist broken and a very strange bruise right across my shin so goodness knows how that got there. I actually wonder if I was dreaming, stood on the bed thinking I was on the floor then stepped off. Who knows.
Anyway, I imagine how you feel is entirely normal. I found being diagnosed a shattering experience and I was 71.
I felt very frightened - I was scared to take the OP meds and after what I can only describe as a ‘gloom and doom’ talk with my fracture liaison nurse I was frightened not to.
In the end I started taking the AA but I hated the side effects - I had everything but the gut problems that I was half prepared for - so I stopped the bisphosphonates after a few months and quite quickly I went back to feeling how I used to feel.
I know my decision really hasn’t gone down well with my rheumatologist or my physiotherapist - they think I’m mad but that’s a risk I’m willing to take at the moment - some people take OP meds (my mothers sister for one)and continue to fracture and others don’t take them and are ok.
A lot of people on here have paid privately to have an OsteoScan osteoscanuk.com which you might find helpful. I do a lot of exercise, I do an hour of Pilates three times a week plus I walk for an hour every day. The Pilates helps balance and muscle strength etc, I eat bone friendly foods and get the vitamins and minerals needed for bone building. I know I’ll not get the bone I’ve lost back but I’m hoping I can keep things at bay.
See what your DEXA score results are they might not be good but they might not be horrific.
There are lots of books and scientific papers about OP out there about OP so read around before you make a decision and at least it will be an informed decision you make.
Be very careful if you are offered Prolia it sounds like a magic cure but when / if you want / need to stop taking it or are even late in getting your next injection you can have problems, if you do stop it you need to take a relay drug - something like a bisphosphonate- straight away
So no, I think it’s quite normal to feel like you do especially as you have other health problems and a young family.
I always advocate avoiding AA if possible. We were not told how dangerous it was I got it in I my 70s.I believe Drs are only suggesting it fo 2 or 3 years now.I was on it for 7+. Had 2 years of self injecting Terraparatide. Osteoporosis is nasty and I sympathise with you. 20 is too young. But hang in there.
I couldn't get on with alendronic acid at all. It made me feel really ill. There are ways to improve bone density, naturally. I was recommended this book, by a nutritionist, and have been following some of the advice. I have no idea if my bones are denser because, what with the pandemic restrictions, I haven't been called back for a rescan, yet but I must say, I feel stronger, generally. smile.amazon.co.uk/Your-Bon...
I also read this Facebook page, which has some interesting stuff on it. Good luck with your journey. facebook.com/groups/5553563...
No the doc hasn’t given me anything yet. Just told me over the phone that it’s ‘bad’ which is very frustrating. I’ve requested the results and after declining, the receptionist finally agreed to send them to me.
I’ve booked an osteoscan as recommended above by fruitandnutcase so I’m hoping that explains it. I think I’ve fractured my toe again in the same place I did 8 weeks ago 😆
Really sorry to read everything that’s going on! I think only you can make the decision with meds, do your research, have a chat with the team after your REMS and maybe speak to the ROS nurses if you haven’t already.
But at least being young it is easier to build up bone density naturally as I think we tend to be at peak bone density in our 30s - so I’d guess your body is still more geared towards “building up” if that makes sense! And definitely try to get your GP to investigate for other causes like the conditions someone else mentioned.
With the meds one thing to think about is the length of time you can be on them. Tablet bisphosphonates are normally reviewed after 3-5 years (can be given up to 10 years depending on the situation) and IV ones after 3 years (can be given up to 6 years) and at that point you generally need to take a break from them. And like someone else mentioned some of the other ones need careful planning when you come off them.
Not saying anything either way, I chose to go on to meds (currently alendronic acid, but having my first IV zolendronate next week) but I was about 7 fractures in by the time they diagnosed me and physical health wise was at a point where doing a lot of weight bearing exercise wasn’t realistic, so felt like I needed something! Plus mine is due to being on steroid tablets, but currently I’m stuck on them so I wasn’t going to be getting rid of the cause any time soon (sorry got a bit waffly there). But basically just saying it’s worth asking about the longer term plans and considering that too.
But it really does suck! I was diagnosed last year at 26 and have really struggled mentally since.
Thank you very much for your reply , yes I need to look into it more but I just got my referral letter today and lo and behold there is not on appointment available in any of the 4 listed hospitals. Really don’t know what to do as I wanted to see a specialist before any medication.
7 fractures sounds awfully painful, I hope your situation improves too. Were you also told you’re too young to have OP?
I can’t say they’ve been the most enjoyable experience! Wouldn’t recommend it 😂 They at least had the steroids as a clear cause for me but were still shocked at how quickly things had deteriorated (dexa in 2018 had normal densities) and every healthcare professional I tell gets very confused. And I think that’s one of the things I find hardest, I was in hospital recently for asthma and when the nurse was doing the admission paperwork she went “and of course your mobility is fine” and I had to stop her and say no, actually I need a walking stick and can’t get very far without it!
That’s really shocking! So they’ve just said no appointments and tough luck?? I’d have thought most young people with osteoporosis should definitely at least be seen in a specialist clinic (even if they’re then discharged with a plan) - especially if they don’t know the cause. Even with a clear cause in me the first thing my GP and respiratory consultant said was that I needed to be seen by the specialists.
I think you should also have an appointment alongside the osteoscan to go through things from what I’ve read. So hopefully you’ll be able to ask questions there. Or the ROS nurses know loads about the meds - I rang them when I was first diagnosed and they were really helpful as I was just told I had osteoporosis and some vertebral fractures and sent on my way from a&e with a box of codeine and no advice
I think you've had good advice here to investigate possible causes of the OP before jumping in with an OP treatment. I also recommend the REMS scan. I had a DEXA scan which diagnosed OP but the REMS scan showed no OP and significantly less fragility. I think the DEXA scan is more prone to error.
It's a depressing fact that in certain areas the NHS is letting people down and you have to get what you need privately. If it is a simple blood, saliva or urine test then there are providers like Medichecks, Blue horizon and Regenerus who will do the tests for you. I use them all the time. If you can self test to pinpoint a possible cause of your symptoms it would make it easier to zero in on the right private consultant and/or treatment.
Yes I’m really looking forward to my scan with Nick, I’m hoping it gives me more of an optimistic outlook and gives me a less dire result than the DEXA. 😅
That’s great advice in regards to the blood tests, thank you very much. I’ve had some done but will need more thorough ones I believe.
Hi i went on AA in 2016 the doctor said i had OP in my spine, She said you must take these tablets as there is a possibility that it could be reversed,
I did disbelieve that but i tried them even after reading about the side affects, after a few months i had acid reflux a lot, I was also put on Adcal-D3 .
I had only taken the AA for about 5 months. I had to stop both these meds as i have trouble with my stomach , gases .
Never had nothing but i waited till my next dexa scan in 2018
Unbelievably it had reversed itself i couldn't believe it after only taking AA for 5 month's,the Doctor sent me a letter with it in writing that i had OP in 2016. and it had gone .
Now im 63 was having pain in my left hip just hsd xray it came back OP. Doctor said i didnt need another dexa scan when i spoke to the receptionist she was about to ask someone else for me to have one.
Now i have low scores on scan and they want me to have drug intravenously.
Which is a hard decision as to which road to go on.
Hope you make the right decision for you everyone is different with meds.
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