Just diagnosed with Osteoporosis - really upset

[Wishimaywishimight]

For context I am a 54 year old female with a strong family history of osteoporosis - mum, grandmother and sister, so this should not be a great shock but it has really upset me. Having a Dexa scan has been on my 'to do' list since before Covid (from when I turned 50 I suppose) but I only got around to it now and I am kicking myself - could I have prevented this?

The report shows Osteoporosis (-3.3) in my Spine L2 which is really bad numbers wise I think? Also osteopenia in other parts of the spine and in both hips. I am terrified of what this means.

I have a doctor's appointment this afternoon to discuss treatment.

Can anyone offer any advice or words of reassurance? Can I improve this or is it just a matter of trying to slow down the progress?

Reviving this thread as it's so informative.
@IsawwhatIsaw how were your T scores on a further dexa scan?

I had my first in 2021, scores were
spine -1.4, hip neck -1.6, hip total -0.9

This week I had the results of my second dexa scan, after breaking my shoulder late last year.
The scores were
spine -2.2, hip neck -1.6, hip total -1.2

I think I'm just shocked that, while my hip has stayed more or less the same, there's been a huge drop in bone density for my spine.

Has anyone else had a large drop in bone density in either the spine or hip, while the other has stayed more or less the same?

Waiting for a blood test to check my calcium levels.

Just to update; I had my follow up (after 2 years) DEXA recently. Of the 9 measurements taken, there had been 2 marked as 'osteoporosis' and 7 as 'osteopenia' (at my 2023 scan). On my 2025 scan all are now in 'osteopenia' territory, none are marked 'osteoporosis'.

The scan helpfully shows the % of improvement in each of the 9 measured areas and this ranges from 4.9% to 15.3% improvement in the scores and my worst T-score which was -3.3 (the one which really frightened me!) is now -2.2 which is a great improvement. Only one other area is 2.0 and the others are now all between -1.2 and -1.8.

My GP said it's a great result and I'm delighted. She plans to keep me on the Alendronic Acid for a further 2 years then, all going well, take a 'holiday' from it at which time there will probably be a deterioration but I should have, hopefully, built up a good 'cushion' by then.

All in all I am feeling much better about things, I continue to do all of the exercises I had mentioned in earlier posts, and honestly never give it a second thought these days.

Good luck to all of you dealing with this condition - I know it is very frightening when you receive the diagnosis.

I last had a DEXA scan 3 years ago- minus 4.7. 😞

They didn't even tell me I was suffering from it. I had to email the secretary months later to ask what the score was and what it means. The hospital haven't spoken to me since?!

@DiscoBob That is absolutely shocking! Did the hospital not even send the results to your GP? Are you on any treatment?

I'm just marking my place as I have just had a letter about a DEXA scan on the 11th September after requesting one. My sister was diagnosed with severe osteoporosis and is only 50 so I shot up the GP surgery pretty quick!

Weird isn't it? I'm on calcium and D3 tablets. The guy in the hospital told me not to take the stronger thing you get an injection of once a year, as it can cause osteonecrosis of the jaw. And I've got an extreme phobia about my teeth falling out.

I'm hoping my score will be better now though as I've put on about a stone. I was v underweight. Maybe that's why they are being like that. They think it's self inflicted so no point helping me? Gawd knows.

OP - are you taking HRT? Increasing oestrogen will help strengthen bones .

@DiscoBob Ah no, I really don't think healthcare works (or should work!) like that! You absolutely did not cause this and you deserve to have appropriate treatment. I am aware of that jaw complication but my GP assured me it is very rare and that, certainly for me, the benefits of the treatment outweighed any such concerns and the latest DEXA results have shown great improvement so I am really glad that I took her advice.

I am no expert but I am really not sure that simply putting on weight is going to have any effect on your bone density.

I would pursue this strongly - can you get in touch with your GP and arrange for them to obtain a copy of your DEXA results then discuss treatment? I really don't think, with a score of -4.7, that you should sit on this any longer.

@cleowasmycat I have no other menopausal symptoms and my GP is happy for me to continue with just the current treatment for now given the improvement in my scores.

@Wishimaywishimight I'm so glad your results show such improvement, and I feel a bit more confident now about starting the aladronic acid.
@DiscoBob - there's a definite lack of communication between departments, my dexa scan was on 25th February this year, and, after much chasing, I only got my results on Friday, and was only able to speak to an actual doctor this morning!

@BCSurvivor That is dreadful! I had my DEXA on a Monday, my GP phoned me on the Friday when she received the report from the hospital, to discuss the results and she posted a copy of the report to me the same day!

I am lucky in that I have private health insurance (I'm im Ireland) and my policy covers DEXA's provided I have a GP referral so I was only waiting a few days for the scan also.

Waoting 6 months for results really is terrible.

Would recommend HRT.

Just to add that for some people Alendronic acid doesn't work as I found after ten years on it with no follow up. I was diagnosed very early fifties. I am now on HRT which has taken my spine out of osteoporosis and stabilised my hips. I really need some dental implants but am having to wait as the AA can cause problems with the jaw even after you have stopped taking it. I was told that there are three main risk factors - small build, early menopause and Rheumatoid arthritis. Diet and exercise alone will not prevent it. I personally think that all women should have a scan post menopause as Osteoporosis costs the NHS a fortune and is miserable for those suffering the effects.

Resistance training. Weights.

That is dreadful. My GP referred me for my follow-up dexa scan without any prompting from me and my results were on the NHS app within days. May even have been within 24 hours. My GP then added a note about the results.

I can’t remember but will have a look.
I’ve finally had surgery on my broken wrist , a break which led to the osteoporosis diagnosis last year.
its upsetting if you consider yourself fit and healthy, though looking back for me, I’d had years of asthma steroids..
im going to get more info from the Society

Are you able to take HRT? My readings weren’t as bad as yours, but two years on calcium and D3 made no difference at all. Started on HRT and my readings were all back to normal after another scan two years later.

I’m sorry you have been treated so shabbily by doctors. You have done nothing wrong and you deserve to have your health taken seriously.

Thank you. I might look into HRT. I do still very occasionally get periods. I wasn't sure if you need to be fully menopausal to be allowed it.

It's really kind for you to say those reassuring words. X

@BCSurvivor
found them
T scores were;

spine was -1.7
femoral neck -2.7
Total hip -2.6

i have not had a scan since, and not due for one for ? 4 years.