Which of the following best describes the even... - Bone Health

Bone Health

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Which of the following best describes the events which led to your osteoporosis diagnosis?

SimoneHUSimoneHUHealthUnlocked255 Voters

Please select one:

69 Replies

I strongly believe that poor checking of calcium after thyroidectomy by GPS lead to mine. I never got a report from hospital that parathyroids where OK after operation. Of course basck then I trusted the Drs , 2 yrs on I know better.

Same here...10 years on I know better.

I had a routine bone density test done at age 52 which was normal. Ten years later, I had a foot x-ray when I went to get orthotics for a bunion and was told there was osteopenia on the foot xray. The bone density at that time showed moderate risk for osteoporosis. Two years later the bone density showed serious risk for osteoporosis.

Hidden
Hidden

After treatment for breast cancer I was put on an aromatase inhibitor as my cancer was Oestrogen/Progesterone positive. So they sent me for a DEXA scan before I began taking Anastrazole. It showed I was already Osteopenic. Been on Anastrazole for 2 years, and now steroids for Vasculitis for over one year. Due second DEXA scan, so will probably be worse now.y

As an update, I don't know my DEXA results are, but I have 3 compression fracture. I'm on Fentanyl patches and Oramorph for the pain, and have started Alendronic Acid.

Another update July 2018. I've had 2 infusions of Zoledronate. I'm 67.

I am a lady aged 79 years of age. I was diagnosed in May this year with Hormone Related Breast Cancer.

It was during the Dexi Bone Scan it was discovered I have osteoporosis.

Hidden
Hidden in reply to millyimp1322

Hope you are clear of cancer now. My story is more or less the same. xx

So sorry to hear about your breast cancer. Hope you are clear of it now What type of care are you having for your osteoporosis? Thanks so much for posting.

Boneyknees

My Mother had Oesteoporosis, So I kept that in mind, and got tested in my forties which just said bone density was low for age, but not to worry about it for 10 years. So I had Oesteopenia in my Fifties, Dr said no need to have any treatment except to take hrt. I didn't take the hrt because my Sister died of Breast Cancer at 33yrs. I Now am on Prolia for past year, after Foresteo and Protelous Failed. Due dexa scan next Month.

I started to have pain in my bones and my hands were getting weaker

Have to take prednisone for polymyalgia rheumatica and because one of its unwanted effects is bone thinning I asked for a bone scan. Was told, incorrectly it turns out, that I have osteoporosis. Further questioning led me to find out it was osteopenia, which although serious is not nearly as dire. I'm now following a self-developed protocol that includes supplements and exercise, most notable are making sure I get Vitamin K2, the vitamin that makes sure calcium is delivered to the bones, not deposited in organs or on the walls of blood vessels, and wearing a high quality weighted walking vest.

HeronNS
HeronNS in reply to HeronNS

Update - my DXA scan one year later showed improvement of bone density from -2 to -1.6. No bone drugs, just nutrition and exercise.

Hidden
Hidden

Routine checkup by a Rhuemotologist discovered in my cats scan. I had no symptoms. My mother had it and lived to 91 with no problems. My brother has it at 84. He hikes and plays golf.

They wanted to put me on the various poison meds to stabalize it but dentist and pharmacist told me to take calcium with D&K

I'm 74 and hike and kayak a lot. Lift weighs and use aerobic machines at the YMCA

Any suggestions?

HeronNS
HeronNS in reply to Hidden

Sounds like you are doing everything right! Make sure you are getting Vitamin K2 (not K1 which is readily available in leafy greens but has little help for the bones). Vitamin K2 is the one that guides calcium into our bones rather than letting it settle into our organs or onto the insides of our blood vessels, and is nearly absent from the modern diet because of our corrupted food supply. I completely agree about the poison medicines and am not going near them. Interested that my doctor was pretty laid back about my decision until after she had attended an osteoporosis workshop,and then she was much more certain that I should be taking something. I wonder who sponsored the OP workshop???

I've had generalised pain for several years but this time I said to my GP this pain is different, it feels like it's right in my bones and after a bone scan I was proved right. Had she gone by a recent D3 blood test which was just within the normal range, I would not have been diagnosed. I insisted on a bone density scan as I knew 'something wasn't right'.  I had a scan in 2010 and that was clear. So within 5 years I'd developed Osteoporosis. I should have been offered a scan sooner because my D3 levels were up and down and I'd had a radical hysterectomy in 2012. I've learned that you have to speak up and look out for yourself.

kerron
kerron in reply to Sallybones

Yes I agree with you sallybones, you have to speak up these days and look after yourself otherwise if you don't you get left to be in pain or discomfort.

I have osteoporosis had it for years and will be 60 in may this year I have had to speak up for myself on numerouse occasions re help for my health problems I also have ulcerative colitis and have had that since I was 25yrs old but I try to look after my self by keeping active and take manukha honey every day and probiotics use lavender oil mixed with almond oil on my knees when they are very painfull I to had an total hysterectomy when I was 41 I found it to be the best thing I ever did and im still on my HRT keeps me young and makes me feel like a woman . Take care keep warm and well.

Sallybones
Sallybones in reply to kerron

Hya kerron lovely to hear from you. I realise I didn't say why I'd had a hysterectomy. It was because I had uterine cancer 2012. It was a serious grade but had not spread outside of the womb and therefore didn't need further treatment. Very lucky. However I was prescribed HRT progesterone only patches by GP to try and help with pain, tiredness and muscle fatigue that still continued but the cancer consultant was not best pleased as she said HRT wasn't compatible with my kind of cancer and that was that. It had actually helped slightly too. I don't tolerate most meds and have lots of intolerances to chemicals so life is tricky and I buy my own preservative free D3 etc.

I try and keep up with probiotics, D3/K2, magnesium and find zinc drops help my skin, nails and hair. Oh and this year started self injecting B12.

Good to hear what helps you and other peoples regimes.

I often wonder what sets our bodies on the downward spiral. You know, what flicks the switch. You've had UC for a lot of years and I wonder if these conditions have a knock on effect.

We're the same age by the way.

Love and hugs to you Sallyb xxx

Hi Sallybones,

I know this is a very late reply to your post but I'm just wondering how exactly you "spoke up for yourself". Raise your voice? Get angry? Broken record?

I've tried everything with the GPs and they won't listen/won't look at my stuff. I've tried being assertive and they just get angry/defensive back.

What exactly did you do to make them listen?

Many thanks

lawdog
lawdog in reply to Sarah030609

Know this is very late reply, but I hand a page or two of my concerns to the MD (or staff BEFORE the MD sees me) Most my MDs are like rollerblades as being rushed to see next patient, so several of my MDs have actually told me this helps a great deal (it saves time and more direct than trying to explain orally what is happening and my questions and concerns). Two days ago my pain management MD said it gave him a better picture and was very helpful as he was entering the room where I was. AND he DID address as much as he could, and he was with me for almost 15 minutes instead of the ussal 5-7 minutes. (I actually time my MDs so I know what the average amount of time I can expect for each one, so I know what to include on my "note " for each MD.)

after being discharged from hospital , I went to my doctor who had replaced my original doctor, she asked if I had ever had a bone density scan as I have been prescribed steroids for my asthma on and off since I was 16 , I am now 52, longest course a year and quite a high dosage any ways diagnosed in Jan this year with osteoporosis which I believe may have been picked up quicker had I been referred earlier.

I was having chemo. I had back (spine) pain for years so they did a spine xray which revealed a collapsed thoracic vertebra, which certainly explained the pain and its location.

Had a spinal op and mentioned I had lost a considerable amount of height. Had a Dexa and was dx with OP. :(

I'm on a very high dose of steroids for an autoimmune disease.

I reported pain in limbs and spine and joints etc for many years. I was completely let down and fobbed off by several GPs and hospital consultants throughout that time.

Unbeknown to me, a hospital consultant then tested my Vit D and found that it was in the twenties (nmol). But he neither informed me or the GP, nor did he prescribe Vit D, nor did he advise me to buy it myself. So I remained ignorant of the finding.

Another 4 yrs passed with 24/7 pain, bursitis in both shoulders and both hips, terrible pain in limbs, inability to sleep from the pain, chronic infections, etc. I eventually got hold of my hospital medical records. Rather than them provude my records within the maximum of 40 days as was stated by the Data Protection Act, the hospital took nearly 1 year.

When looking at my records I found out that my Vit D was in the twenties (nmol) and that the renowned consultant had done Sweet FA about it. The consequence to me was of constant pain for years, a compromised immune system, chronic infections, and worsening osteoporosis that I didn't even know I had.

I no longer trust GPS and medics. They had ALL let me down. I now do my own research and realise that they talk crap most of the time.

At my most recent GP appt, the GP told me that ALL of my blood results (recently done by a hospital consultant) were good and fine and normal. I challenged him on one of the results and he then awkwardedly admitted that he knew it wasn't good. So he had lied in the first instance and, only when pushed, did he admit that he knew that it's "not good", and added "but we don't treat this"; a disgusting doctor, not worthy of trust.

So do your own research. And question everybody.

After finding out that I most probably had the low Vit D for decades, I then got a Dexa scan from a locum GP. Every permanent GP had spent years refusing to let me have one. If they had listened and acted on my reports of chronic musculoskeletal pain and referred me for a Dexa scan, I would have had confirmation of osteoporosis and Vit D years earlier. I had reported chronic pain and fatigue for years (i.e. Osteomalacia) but all the GPS and hospital consultants were too dim or uninterested to act on my symptoms.

Gillymar
Gillymar in reply to Londinium

I am sorry for your mistrust of the medical profession. My experience of my doctor and local hospital is one of gratitude. After finding my fractured femur (missed also by osteopaths, hydrotherapists, chiropodist and reflectologists who all said the pain was muscular) every stop,was pulled out to rectify the situation.

Nanaedake
Nanaedake in reply to Londinium

Years of musculoskeletal pain and undiagnosed. missed fractures for me too. Hopefully now I'll never be told 'it's all in my head' when in terrible agony and will get proper care or at least pain relief for fractures.

LOSS OF HEIGHT

I have osteoporosis. Alendronic acid prescribed for it caused a femur fracture. I walked painfully on it for 2 years before a new Doctor sent me for a MRI scan. Successfully operated on for pinning May 2016. Other leg went the same way 2017. Quick response from doctors due to omission of late diagnosis previous year meant operation on 2nd femur. March 2017,. Not so successful this time . Developed AKI, coffee ground vomiting and dehydration in theatre and am still in pain and virtually immobile . Now I have a fractured vertebrae and have started a course of self administrated injections for 3 months. I am very interested in connecting with others with similar problems.

maryknapp12
maryknapp12 in reply to Gillymar

A course of self administrated injections for 3 months???? Of what????

My back got very curved. A scan found 2 fractured vertebrae and degeneration of the cord.

7 years of bone pain, 4 fractures, asked for a DEXA at hospital but refused, new doc eventually sent me for a DEXA.

After suffering bad back pain for 2 x years, and an MRI scan on the NHS which showed nothing, I paid for a private upright MRI which showed one fracture in the spine, then I pushed to see an orthopaedic surgeon who did another MRI which showed up another two fractures in the spine, I was then sent for a DEXA scan, which showed -3.6 and some vertebrae at -4.1 Its not in my family at all, my mum is 93, in a care home, can still touch the floor, bends over easily, good strong back and has never broken anything.

I was aware that I have been underweight for many years but also my weight has dropped by 1 or 2 pounds each year over the last decade. As it was never a dramatic weight loss it was never investigated by my previous doctor. Having moved to a new area my new GP did instigate various blood tests plus a DEXA which showed osteoporosis. Guess I'm lucky not to have a fall or broken bone so far.

Taking steroids and having a hysterectomy at 33 years of age.Plus not being given any calcium supplements. Know 23 years on still on steroids still getting spinal fractures. However I do now have desomub(not sure of spelling) as a injection every 6 months.

I discovered I had osteoporosis following diagnosis of a parathyroid adenoma

My PT's scales showed me as having the lowest bone density of any of his clients which is why I took myself off to the GP who sent me for a DEXA scan which confirmed osteoporosis in the spine and osteopenia in the hip. I'm 55 and post-menopausal.

Early menopause

I was repeatedly refused a DEXA scan even though I had damaged my coccyx in a fall and my Mam and Nan both had fractures due to OP. The excuse my stupid GP made, was that I was under 60.

Needless to say a few yrs later in 2010, I broke both wrists in a fall indoors. I got my scan ( I was now just turn 60). which confirmed OP.

I still feel bitter about the laxed attitude the UK NHS doctors had concerning OP. If I had started treatment sooner, I may have avoided the 2 broken wrists.

Hopefully things have improved now.

Do you have universal healthcare in the UK? I can't believe all the posts on here on how difficult it is to get your doctors to listen to you!! I'm in America and have excellent health care. My doctors listen to me. I have a lot of things wrong with me including severe osteoporosis, hypothyroid, arthritis, COPD and a whole slew of other diseases. I've had 3 surgeries on my right shoulder. This past surgery I had to have a plate put in because all the hardware came out of the bone on previous surgery due to osteoporosis couldn't hold the hardware. I see my surgeon next week and if the plate moved, I have to have a shoulder replacement. Several surgeries and I'm walking unassisted and able to care for myself and have a fairly normal life. I have a whole team of doctors, surgeons, therapists. I'm worried about the elections coming up in 2020. Just about every presidential candidate wants medicare for all. I'm on medicare and private insurance which means I pay no coinsurance, office visits etc. I also receive care at the Veterans Medical Center because, I'm a veteran. Wait and see how the elections go. I'm 70 yo.

Hi Maryknapp

In the UK we have a ‘free’ National Health Service, which covers most health issues. I say ‘free’ but this isn’t really so. I worked full time ( in the NHS) for 40 yrs, without a break in service, paying compulsory tax and National Insurance contributions, that go towards the NHS funding.

The problem with the NHS is that folk who have never worked, for what ever reason, get the same level of care, without ever paying towards it.

Our population grows yearly, not helped by immigration and the fact that folk are living longer, so overall the demand on the NHS grows out of all proportion, to the funding going into it. It’s really on its knees!

Regarding GP’s. There’s not enough to cover the growing population. The newspapers report that hundreds of GP’s are leaving the service each year, as soon as they can afford to, because of stress and ‘burnout’.

Unless someone has a life threatening, acute illness or accident, therefore attending an accident unit, where they will receive medical help, they can otherwise wait over a week to get an appointment with their GP. If they then need a Consultants referral, this can take many months to come through.

Fortunately apart from OP, I’m otherwise healthy, my OP medication ie Strontium Ranelate is arranged via the pharmacies repeat prescription set up, so I haven’t seen my GP for many yrs. Because I’m over 65 yrs old, my prescription is free. I’m actually 70.

It’s only a very small percentage of folk in the UK who have additional private medical insurance.

I can see in future, this will become an option for folk in employment. When I was working, it wasn’t necessary. My husband paid into a scheme for many years and the only time he tried to claim was after breaking several ribs in a fall. They wouldn’t pay out because broken ribs weren’t covered under his policy!

Best wishes

I'd been training with weights for years, as well as doing regular cardiovascular workouts. I mentioned to my doctor in passing that I seemed to be shrinking, and he referred me for a DEXA scan. I said 'Oh I don't think it can be a bone density problem', thinking of my exercise, but I was proved wrong. At that stage, 2 years ago, it was Osteopenia, but I've just had the results of a second scan, and alas, it is now Osteoporosis.

Doctor suggested I should have a scan as I at menopause

Hidden
Hidden

I had lower back pain, upon examination suggestion of having scholosis leading onto X-rays, followed by scan on the lower back and hips

I saw a gynaecologist about something else and because of my age and hearing I'd fractured my wrist 3 times in my life, she wanted me to get a bone density scan.

Being underweight and in my early 60's I asked my GP to arrange a DEXA for me. The scores confirmed osteoporosis.

I had kidney stones & was advised to cut back on calcium & explained my families history of osteo & concern about cutting back on calcium & referred for a dexi & found I already has osteoporosis.

I had knee replacement and was told my bones were mushy and the same report after a heart surgery.

Sent for scan after early menopause.

GYN routinely had blood test and dexa for women who had family members with OP. When results began to show possible beginnings of OP, treatment started with once a week oral med in am before breakfast.

The kicker was, (both parents having osteoporosis led to my interest) after finally getting a DXA done, my (now retired) family doctor said at the time that I'd tested negative for osteoporosis. A year later I happened to request a copy of my DXA test result and found that I was diagnosed with osteoporosis.

HeronNS
HeronNS in reply to wbiC

You sometimes wonder whether they really read test results....

Treated for mechanical low back pain for 3 months by GP and physio and did all the exercises prescribed which I think made everything worse as eventually an x ray showed 5 compression fractures. GP very upset and embarrassed. Bone clinic appointment in 2 days.

HeronNS
HeronNS in reply to Nuthatch

Owch. Let us know how things go.

Mentioned bump on spine to consultant

He then sent me for dexa scan

Seems that more people should get checked for osteoporosis. Alendronic acid is my treatment, (including year off) and has worked well.

Have been self medicating with T3 and was told it could lead to AF and osteoporosis, I have been trying to get the NHS endo/GP to prescribe it for me and both have refused on cost grounds, endo also quoted above reasons for not prescribing. he recommended I have a DEXA scan which has shown osteopenia. Now they are suggesting bisphosphonates which I am reluctant to take unless I am actively losing bone and the osteopenia changes to osteoporosis. So I expect I shall have another discussion at some point and they will both use it as another excuse to refuse T3.

I had only been taking T3 for 5-6 months prior to the DEXA scan and believe it will have had little bearing on my bone density.

Still fighting to get T3 on the NHS.

I was told back in 2002 after some bone test and the my grandmother had bone problems most of her life, and after i was tested for it and suffer with it today. But the medications dont help, or can't take the meds do to my asthma i just rely on herbs and do home remedies instead. I hope you can get the help you need for yours and God be with you. Janet

I was wondering why my chin was getting closer to the table, making it more difficult to focus on the food. I happened to be sitting next to a medical scientist when I made this comment, and he suggested I should get checked for ospeoporosis. My mother had all the symptoms, though I never heard of a diagnosis in that case. When I warned my sister to get checked, she blandly told me she had been diagnosed several years before, and had been under treatment. I regret that she had not bothered to tell me, as mine might have been nipped in the bud.

I was diagnosed after having a fractured elbow and 1yr later fractured wrist n 2 places . This flagged up something may be wrong was sent for and bone scan revealed osteoporosis .

I tripped up when I stepped back, landing on my bottom, on a thick hearth rug and damaged my coccyx. I was in pain for months. I had a family history of OP yet was refused both a X-ray and DEXA scan by my GP.

He said “even if it’s broken they won’t do anything about it“. He also said that people in their 50’s don’t usually get OP.

Several years later In 2010, I fell again, this time breaking both wrists. I by passed my GP by going to the ACC unit and eventually got my DEXA scan a month later, which confirmed OP.

I felt bitter about it. Had I been diagnosed after the first accident and started treatment, it may have prevented the 2 broken wrists!

Dare I say it - what an idiot your doctor is.

Like you I felt bitter that so many opportunities were overlooked before I finally fell and broke my wrist. Trouble is, so many doctors only deal with ‘their’ part of your body.

I am 50 years old and had an emergency DEXA scan just under 3 weeks ago and was told by the technician there and then that I have a severe case of Osteoporosis. She told me to be extremely careful bending over (especially doing so quickly) as something as simple as that or twisting suddenly could result in a fractured spine.

I an extremely angry about this as I have for years been asking both my GP and Rheumatologist about my bone health due to over 12 years on Depo-provera (contaceptive injection with a black box warning for Osteoporosis ) in my late teens and 20's, longterm low vitamin D eespite treatment, long-term high dose prednisolone for PMR and early menopause (peri-menopausal from age 32 to final period aged 45), and Hypothroidism, regular March fractures and several Non-trauma rib fractures over the past few years, but have been consistently told Everything is fine and that I didn't need any tests.

Anyway, just about a month ago, I fractured my sternum. It was a non-trama injury.

All I did was lean against something whilst pulling something towards me.

The A&E nurses were shocked at the severity of my pain on examination so sent me for an Xray. I have a fracture approx 3" long about 1.5" below the centre of my collar bone. This is the 4/5 non-trauma fracture in my chest area in the past 4 years and although I have seen doctors, they refuse Xrays for non-trauma rib injuries as nothing can be done but on examination have always stated that there dx was rib fractures.

Still no tests of any kind until this fracture and then only because A&E Stafftold me to ask my Rhuematologist whom I had a telephone appointment with 2 days later, for DEXA scan.

Still awaiting letter with my T scores and then find out what and when any treatment will start.

I also have PMR, EDS, Fibromyalgia, psoriatic Arthritis, osteoarthritis, i suffer from Costochondritis on a regular basis. So am in constant chronic widespread pain.

This fractured sternum though is more painful than I ever thought was possible from a bone fracture.

I am honestly sorry that anyone of us has to deal with this life cganging diagnosis..

Had CT scan for staging Colorectal cancer in February 2019. It said - bony window settings show several vertebral collapses involving the lower thoracic and lumbar spine which are probably osteoporotic in nature. Neither hospital consultant, GP or any other healthcare professional told me. I only found out in May this year when I obtained my medical records. I have tried to no avail to get GP to act. Finally convinced one and he said but you haven't got a diagnosis yet . We'll order a DXA scan. That was October and the waiting list is up to a year.Luckily at the beginning of the year I had done a self referral to physio as knew my back wasn't right, put on hold with Covid, I finally had phone consultation and she referred me on to CMAT. They organised urgent MRI which showed further fractures- again obtained copy of results. She is now off sick so nothing has been done and I have another telephone appointment for 12th January. She also referred me to frailty clinic but despite two phone calls to secretary have not heard a thing.

I was diagnosed coeliac and read somewhere that this can lead to osteoporosis and I also had lost a quarter inch in height.

I had been taking Prednisolone to treat Polymyalgia Rheumatics for a whole year before I realised I should have had a dexascan to monitor my bones from the start. I requested one during lockdown and my t-score was a shocking -3.6. I'm waiting to start Zoledronate.

Measured before surgery for something completely different and found had lost height. Pressed GP for DEXA scan. He has previously dismissed severe back pain as muscular. Now know was vertebral fracture!