Just diagnosed with osteoporosis. Please help as feeling overwhelmed

[4Tornot4T]

Hello, I've just been diagnosed with osteoporosis in my lower spine L1-L2 and am feeling absolutely devastated and very tearful. My T score was -3.9 which seems to be very bad. The other areas seem to be OK although I have osteopenia in my hips. Osteoporosis runs in my family and I had an early menopause so was at risk but I still feel in shock. I'm 58 now and lead a reasonably healthy lifestyle. If anyone can give me any advice I'd be so grateful. I previously posted in general health but another poster suggested menopause would be a better place. Thanks in advance.

Thank you @JinglingSpringbells and @UnaOfStormhold

I give them up, then they creep back in again. It’s a significant habit- as in, 2l a day. Knowing the bone health issue is a helpful motivator, though as yet I haven’t had any issues with my bones. Long may that continue, as I have other conditions!

I've just seen a rheumatologist as I was diagnosed with ostopenia. He has run a few blood tests so I am awaiting the outcome of those. He said HRT was a good medicine to improve bone density and also that vitamin D was absolutely essential. I would definitely get a private referral if you can afford it. I went private and had to wait six weeks, although that is potentially because my orthopaedic consultant recommended a particular doctor.

My mum has grade 4 osteoporosis, she eats with it in mind now and has a huge list of foods high in calcium and vit D. She is just about to start the injections, she pushed for them as there are much less side effects.

My sisters both have broken bones at the moment, we're all in our 40's, so have been referred for dexa scans, I'm the youngest so hoping I can catch anything early. In the meantime I'm eating better and doing weights at the gym.

My mum has been told after a year of injections, they will expect to see a significant improvement in her bone density. Push for a referral to see the experts in it.

Thank you all for such helpful and encouraging replies. I'm seeing my GP again on Tuesday and will push for a referral as the injection sounds excellent.

Maising - do you know which injection your mum is getting? A significant improvement in bone density would be brilliant.

I'm still trying to process the information. I don't really have symptoms apart from an occasional back ache so I really wasn't expecting this diagnosis at all.

My mum has grade 4 osteoporosis- what do you mean by this @Maising ?

Osteoporosis isn't 'graded' as such.
The T- score and Z-scores give the bone density.

@4Tornot4T Unfortunately, you can' t 'ask or push' for whatever treatment you want, on the NHS.

The treatments are decided on medical criteria. As you don't (yet) have any fractures, there will be a limit to the drugs you'll be offered.

There are such strict criteria that one drug (it's an injection) is only available if someone has 2 spinal fractures (rather than 1).

If your T-score is -3.9, is that the average across your lower and upper spine- or just the worst lumbar discs at the base? (L2)

(Personal experience! Had DEXA scans for almost 20 years.)

The ROS has a list of drugs, but as I said, some won't be available.

https://theros.org.uk/information-and-support/osteoporosis/treatment/?_gl=1phk9am_upMQ.._gaMTE2Mzk2ODIzLjE3MTA2NjY0MDA._ga_LE28KHFKJD*MTcxMDY2NjM5OS4xLjEuMTcxMDY2NjQyNy4wLjAuMA..

There was until not long ago, a postcode lottery/ NICE restrictions on some of the newer drugs. One such drug (injection) was only available in Scotland until recently and would have cost around £9K a year privately in England.

Thank you. That's incredibly helpful. I'm going to ask to see a rheumatologist privately as my DMum has kindly offered to pay.
I'm not sure if the T-3.9 is the average. The report just says that it reflects the underlying BMD in the spine so I guess it is the whole spine. My femoral neck and hips are osteopenia (T score is -1.4).
I'm do angry with myself for not asking for a DEXA years ago when more could have been done to prevent this.
Does it sound as though a fracture is inevitable?
I feel so upset and depressed about it all.

A fracture is definitely not inevitable. Obviously take advice from the drs but you might get good improvement from osteo drugs AND HRT.

The British Menopause Society does suggest HRT as a treatment for women under 60 and cautions that other drugs can have more side effects .

I'd also say be prepared to get more than one opinion because often there are an many opinions as there are specialists!

This is where working on your balance, strength and mobility can really make a difference by reducing the risk of a fall in the first place. And resistance work plus lifestyle changes plus appropriate medication can halt or even reverse the decline in bone density so you're less likely to fracture if you fall. Yes, this is going to be a mission for the rest of your life - but it's a mission where you can make real differences to your health and quality of life.

Thank you so much. I'm quite scared of falling as my balance is bad as the result of a serious injury years ago but I'm going to ask to see a physio for specific exercises to help. I don't mind a mission - and if I can reverse the decline it would be great. I was stunned that it was so bad- I had a DEXA 8 years ago and it was all OK. I'm so angry I didn't get one earlier.

Yoga and Pilates are good and the NHS has videos online as does the ROS.

Don't blame yourself- this really sounds like a GP/NHS negligence issue.

If there is a family history, you were right to have scan at 50. BUT rescans should be very 2-3 years. (The NHS says 5 years sometimes, but this is really a money-saving issue not a clinical decision.) This is because in the first 5 years after menopause, up to 5% bone loss per year can occur (25% in 5 years.)

I've had all my DEXA scan privately and the advice has always been 'repeat in 2 years'. I have friends with osteo etc and they have scans every 2 years.

I read on a fb menopause group thread, women who have reversed their osteoporosis with hrt, it’s called The Latte Lounge if you want to look it up.

I wish I'd known about having scans every two years - I would have been happy to pay privately. I just didn't know I should have done it. I could have avoided this. I'm so upset I can't stop crying.

@JinglingSpringbells that is just what the doctor told my mum, grade or level 4 🤷‍♀️. She has the injection but has never had a spine fracture, just one v bad wrist fracture. The neck is her worst area on the scan.

Thank you. I hope your mum is OK. I'm still in shock as I really wasn't expecting it.

The other really sensible bit of advice for newly diagnosed people that I came across is to remember that osteoporosis is a slow build condition; you didn't get it in a day, and you don't need to (and can't) fix it in a day. So take it one step at a time, learn what you can, get the support you can, introduce changes at a sustainable, sensible pace.

Thank you. That's wise advice. The temptation is to rush but I agree it's best to get good advice etc.
Just furious with myself for not getting more regular scans. This situation probably could have been avoided.

Panic not! - I have had osteoporosis for years and it is well treated these days. Your GP needs to prescribe calcium and Vit D tabs and put you on one of the many treatments available - I have 6 monthly Denosumab injections. No side effects - not a problem.

You can ring the helpline of the Royal Osteoporosis Society - they are very helpful: https://theros.org.uk/

Some women have an injection rather than an oral tablet as many of th bisphosphonates irritate the stomach and throat.

There are many different treatments - some are infusions, injections an d tablets, but some are only used for severe osteo where someone has had several fractures.

Stage 4 is used when someone has a stooped appearance - usually spinal fractures just below the neck.

It's not a term in general use.

Your GP needs to prescribe calcium and Vit D tabs and put you on one of the many treatments available

This is now considered out of date by some specialists.

Calcium tablets are said to be of no benefit to younger women and may cause arterial plaque (heart risk.)https://www.hopkinsmedicine.org/health/wellness-and-prevention/calcium-supplements-should-you-take-them

You will see other posters here saying they are not given calcium as blood tests show they are not deficient in it.

the ROS has a comment on this also saying too much (from supplements) can cause other health issues.

My friend who has severe osteo (far worse than anyone here) does not use calcium supplements.

Thank you all. I hope I don't need extra calcium supplements as I took them for a short while but they gave me horrendous stomach problems.
A six monthly jab with no side effects sounds great.
I have spoken to the Royal Osteoporosis Society helpline. Absolutely wonderful and I joined straight away. So helpful and friendly and they put up with my tearful questions without complaint!