Osteoporosis diagnosis please help

[JenaWren]

I've just had a text from my Drs diagnosing osteoporosis following a DEXA scan. I'm in total shock.

I'm only 54.

They prescribed alendronic acid which I know has some potentially serious side efffects.

Can anyone help me understand a bit more until I get get to speak to a doctor.

I'm in a bit of a mess at the moment.

Osteoporosis can be a symptom for a condition called primary hyperparathyroidism. I’m just mentioning it in case you have other symptoms which are of concern (eg fatigue, brain fog, kidney stones, unexplained pain, depression). It would be worth asking your GP what your calcium level is and also whether they have checked your parathyroid hormone level. Primary hyperparathyroidism is usually indicated by high calcium and high PTH levels (although not always). Some GPs have little understanding of this and wouldn’t think to test for it.

Not a great diagnosis but my child got that as a teenager and has had to live a more restrictive life to avoid anymore broken bones

@JenaWren I would also reconsider taking calcium supplements.

There has been recent evidence from the US and the UK about risks of taking calcium which has been linked to CVD (heart issues.)

The calcium blocks the arteries, unlike when we get it naturally from food.

Most GPs are completely behind the times with recent research and reach for the prescription for calcium without knowing all the facts.

If you have a good diet and can get 700-1000mcgs a day of calcium from food ( easy if you eat dairy, sardines, most pulses and green veg) you won't need supplements.

I was 42 when my periods stopped and they wouldn't let me have any tests for menopause for 7 years and by then I had osteoporosis.

I went on HRT, and it had massively reduced by the next scan so I wasnt in danger anymore.

I started on the calcium tablets but they had no impact, me blood test levels were the same either with or without them

I did up my dairy intake massively and also green veg with calcium eg spinach.

I'm fine now so don't panic.

Connie I'm very sorry to hear your child was diagnosed. That must have been incredibly difficult for you both.

It's also incredibly difficult for me too. Especially today.

How long ago did your periods stop? Have you had an early menopause? or any other risks like long term steroid use?

Thank you for all the advice on treatment options. Lots to think about. ROS said I didn't need to make any decisions today which was also helpful.

@JinglingSpringbells please could you link to the research on calcium supplements? I’m very interested in this as my GP seems to have little knowledge about the implications

I spoke to my GP who apologised. And was also surprised at the results.

She's sending the results through.

Hip is osteoporotic at -2.6
Spine is osteopenia at -2.4

That's hopeful as you are just into the osteo range (below -2.5)

If you want to PM me please do as I don't want to put all my personal history online but can share a lot of info.

Here we are - one of many online if you put in the search terms

https://www.hopkinsmedicine.org/health/wellness-and-prevention/calcium-supplements-should-you-take-them

Your DEXA results seem very similar to mine as far as I can recall, and I was a similar age.

Let me reassurance you: 15 years later my osteoporosis has not got worse and I am fitter than I was a quarter of a century ago. I still ski up to 6 hours a day and have been told I ski like a teenager.

Yes it requires a fair bit of exercise and a healthy diet, but I have come to relish both. These days I have so much more energy!

This information about calcium is very interesting, @JinglingSpringbells . I'm going to email my doctor about this.

I would be over the moon if my T-scores looked like yours! Truly, you are barely just a smidgen into the range deemed to be osteoporosis (-2.5 and below).

DEXA scans have quite a large margin of error. If you went to a different hospital and had another scan this afternoon, the chances are that the results would be different. Dexa scans are very dependent on correct positioning.

There is another type of scan, which is currently only available privately, which is less prone to error. It's called a REMS scan and uses ultrasound rather than x-rays. They cost about £250.

There are two companies in the UK providing the REMS scans. One, called Profortis, is based in Amersham and the other, called Osteoscan, is based near Daventry.

Osteoscan also run mobile scan clinics around the country, so if you're not near Daventry you might find a clinic is held nearer to you.

At your age, HRT is likely to be a much better option than alendronic acid.

@MarshmellowMoon just also highlighting for you that osteoporosis and kidney disease are both symptoms of primary hyperparathyroidism. Just in case you’ve never heard of it, it might be something worth investigating, especially as it is curable through surgery.

God I can't thank you all enough.

I'm really heartened by the positive stories and you lot are a mine of information.

One of my big worrries is the effect on life. Im really active - was running up until a couple years ago, cycling and hiking (the south west coast path is a particular favourite).

I'm really heartened to hear your positive stories of staying fit and active. And for other ways to improve bone health - will absolutely look at dietary calcium. I think the ROS has some good info.

You lot are amazing! Thank you again

Have a look at Caroline Girvan on YouTube if you want to do really effective load-bearing exercise!

@80sMum You are right about scans needing to be done on the same machine. I've had scans for roughly 16 years, 2 years apart.

The point about @JenaWren and her score being 'only' -2.6 is that she is young and her Z-score will show what she should be for someone of 54.

She's not said if she is post menopause yet (be interesting to know that) but post-menopause we can lose up to 5% bone annually for a few years. So it's vital she stops the rot and tries to reverse it with everything available- diet, exercise HRT (if she can) and any other drugs.

Bisphosphonates are borderline useful for her. I was told they are inappropriate for young women (under 60) without established osteoporosis. She's got osteo but as you say on another machine she might get a score of -2.5 or even -2.4.

HRT is recommended as first line therapy for younger women.

@JinglingSpringbells I am not in the same situation as the OP. I have Zolendronic infusions via oncology after surgery for breast cancer and before radiotherapy. The DEXA scan which diagnosed osteopena was organised because the plan was to give me oestrogen blockers, but I declined after reading that they would give me at best an extra 3% improvement, and they made me feel dreadful!

And I am 67, so finished meno some time ago.

This is poor. I'm waiting for my 2nd dexa scan, post diagnosis of osteoporosis, was previously osteopenia.

I understand how shocked you feel. I was diagnosed last year at 55 and still feel low about it, to be honest. I had just started hrt and the specialist I saw, said that if I stayed on it, I might not need other medication. I have also upped my vitamin d and try to eat more calcium rich foods. I am trying to shake off the feeling of being older and frailer!