Newbie.: Recently diagnosed with... - Bone Health and O...

Bone Health and Osteoporosis UK

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Newbie.

Recently diagnosed with Osteoporosis. I am shattered. No advice from GP, just given meds over the phone. Have found a lot of advice on various websites as well as from a lady at the gym.

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Savbing

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16 Replies

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Heather96 years ago

So sorry to hear of your diagnosis and even worse the way you were given the news. Sadly this is all too common - I had the same happen to me last October and a phone conversation gives no chance to collect your thoughts or questions and no time to realise the inevitable emotional impact. I also found it difficult to discuss with family or friends in any meaningful way as people think that there is no real problem with osteo i.e. if you've not had a fracture "there is nothing to worry about" if you have then "it will heal and you will be ok again" seems to be the general response.

Do download and save the NOS booklet "All about osteoporosis and bone health" (as a pdf perhaps) from this website, it is very, very helpful and informative. This forum is also fantastic.

I wish you all the best with coming to terms with your diagnosis and with your meds. I hope you get the help and support you need.

Kaarina6 years ago

So sorry to hear this Savbing. Unfortunately this appears to be the norm in some areas and it really sucks!

If you are in the UK you can always give the NOS helpline a call and speak with a nurse. Those that have given them a call have nothing but praise for the help and advice they give. Call 0808 800 0035 - free from all UK landlines, mobiles.

You are not alone with this. Ask any questions and someone will reply. Also have a read of other postings on this site too. There is a search box that you can use as well.

Stay with us and we will try to help you.

tikigod186 years ago

BE VERY CAREFUL starting any meds before you do a LOT of research. In MANY cases, your physician may not be your friend as much as a friend to the drug companies, If you have access to Facebook, there are about 5 groups on Osteoporosis, and the meds available, side effects, etc. JOIN them and learn from first hand victims of some of this medication.

Titian8• in reply totikigod186 years ago

You are spot on tikigod18 and better to do what is right for the person after doing research, rather than just accepting a doctor's prescription which is mainly down the drugs route, and perhaps not best for the individual.

Personally I've found this site to be the best for advice, suggestions and recommendations and spent hours reading everything and decided to follow my own choice of supplements and activity without any drugs whatsover.

Kaarina6 years ago

Hi again, do you have a copy of your DEXA report? If not, you are definitely entitled to a copy. If you are in the UK you can request a copy from the receptionist in your surgery and they will run a copy off for you. It is important you have a copy to compare with any future DEXA scans you may have and also for you to know your result.

Savbing• in reply toKaarina6 years ago

Thank you. I have a copy.

• in reply toKaarina6 years ago

I am going to ask for my dexa report when I see a dr in a couple of weeks, yes important to know about

Met006 years ago

Hello Savbing. A diagnosis of osteoporosis doesn't necessarily mean you have a high fracture risk, as this depends on your t-scores (from Dexa scan), combined with other factors such as whether you've had a previous fragility fracture, your age, whether you're on other meds that raise fracture risk. Your GP should have done a fracture risk assessment, but you can check this out for yourself on either FRAX (sheffield.ac.uk/FRAX/ - select the country you're in from the drop-down list on Calculation Tool at the top of the page - ideally you need your t-scores for this) or QFracture (qfracture.org/index.php - this is sometimes used in the UK and claims to be more accurate, though GPs usually use FRAX). Meds aren't usually considered necessary if your fracture risk is less than 10%. Some people choose not to use meds, even with a higher fracture risk than this - it's a personal choice, based on our own individual perception of risk, which can only be estimated because ultimately we don't know what our risk of fracturing is until we actually fracture!

Savbing• in reply toMet006 years ago

My frax risk was 20% for a fracture. Pretty dire. I have many risk factors: genetics, hysterectomy at 38yrs and 40 years of anticonvulsant therapy.

Savbing6 years ago

Thank you all for your support. I do have my T scores and Frax results. I really knew this was coming I suppose. I asked for the Dexa scan because of my history. What shocked me was what about folks who do not ask for a scan or cannot search for support. I chatted to a girl I went to school with. She said someone hugged her and fractured 2 of her ribs. She is a bright woman but with no idea that this is a red flag. I advised her to get a scan via the GP.

I think the medical system should be identifying patients with Osteoporosis, not me as a member of the public. Why is there no screening programme?

I have contacted the NOS, great service.

Brittany16 years ago

Hi Saving, I was diagnosed 2 months ago and I am still in shock. I asked for a DEXA scan but I could have continued unaware and deteriorating for a long time. It concerns me that we are screened for other illnesses but somehow osteoporosis is not a priority yet it affects a significant number of women. GP was very caring, did the FRAX , gave me medicines, lifestyle /exercise advice and then told me to carry on life as usual....nothing else. I too have read lots and contacted the very helpful NOS. Also, I have seen a physio privately to discuss appropriate exercises as I need to make sure I don't make matter worse. I do not have private health insurance but I just desperately needed advice . No offer of physio for OP on NHS as I do not have pain or injuries. I have increased my exercise, however, I wasn't partially inactive- even skiing without any injury until before diagnosis.

Toplady6 years ago

Hi Savbing,

Sorry to hear you had your diagnosis over the phone, hardly the way to discuss a significant diagnosis like a Osteoporosis. I was diagnosed 4yrs ago at 47 following a spontaneous Sacral (S1 vertebra) and that came as a total and utter shock so I can sympathise with that. I would echo others suggestions such as making an appointment to discuss it more fully with your GP and using the NOS helpline - I spoke to them on many occasions and found them to be extremely knowledgeable and very supportive. There are also NOS support groups around which can be helpful for support too.

I totally agree with you that there should be testing for this insidious disease; it is far mor common than people believe, can happen in pre-menopausal women too and can catastrophically change your life if not picked up.

I was prescribed Alendronic Acid and whilst there are many schools of thought out there about it, it has been fine to take in my case, I’ve had no side effects and my bone density has improved.

Best of luck with your own Osteoporosis story, please remember you are not alone, this forum is a great place to air views and find support from people who really do know how you feel. Take care 🙏

Twistandshout6 years ago

I know what a shock this is I am still coming to terms with it. I was diagnosed 2weeks ago after a sprain and still wondering if to take meds. My doctor did blood tests and found my vitamin d was on the floor even though I am a sun lover and look extremely tanned. Also my parathyroid was all over the place. This can cause osteoporosis I am told get these checked. Hopes this helps.

6 years ago

So sorry about your diagnosis Savbing, it is a shock and really takes a while to accept. ( myself being diagnosed the beginning of the year). Keep checking in here, lots of help and advice I have taken on board, keep asking questions especially at the doctors. Take care xx

sweetsusie6 years ago

Please do a'll lot of research regarding the bone meds that you will be told to take. I won't take them, so my doctor put me on hormone replacement therapy (HRT). It works great for me and I am 70 years old. Yup...rare doctor that will prescribe these at that age!

LynneH-196 years ago

Welcome to the Forum. Can you give us a bit more information please about yourself. Have you broken any bones, do you have a family history of OP?

What was your T score and have you had blood tests done, particularly a vit D blood level? What has your GP prescribed for your OP?

I found ‘Vitamin K2 and the Ca Paradox’ by Kate Rheaume Bleue helpful.

It explains have D3, Mg, A retinol and vit K2,all work together to aid the absorption of Calcium and directs it towards the bones.

Also: blogs.creighton.edu/heaney/...

This explains the importance of protein. The bone framework or matrix, is composed of the protein collagen and is what gives bone it’s strength and flexibility. Quality protein is therefore required for its continuous maintenance and renewal.

Best wishes

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