Help please.

[janet65]

Hi everyone I'm new to the category of health.

I've been having Dexa scans since 1997. I had several done when I lived in Spain. I've been back in the UK since 2012.

I had a scan in 2021 and recommended that I had a medication break from Alendrolic Acid for two years and then have another scan. So my scan was Dec 2023.

Seemingly the centre don't send results to patients anymore only the GP. I've chased the results and finally found some numbers but no clinical evaluation this time. Just a comment that says no further scans needed.

My question is that the results here don't show any grafts so I don't know if my bone loss is dropping significantly?

In Dec 2021

BMD Interpretation:

Lumber spine T score : - 0.7

Left femoral neck T score : - 0.4

Right femoral neck T score : - 1.0

Dec 2023

Lumber Spine T score : -0.7

Left femoral neck T score : - 0.7

Right femoral neck T score : - 1.3

I'd be grateful for any thoughts to help me.

Janet

[MWZ3]

They are amazing scores. No need for any medication that’s for sure. Maybe just control your other conditions like thyroid if possible.

[janet65 in reply to MWZ3]

Thank you for replying, Yes I do my best with the thyroid, just wish I was tested every 6 mths with a full panel but that's not easy with the GP surgery. I once told a GP that that was how it was in Spain....the reply was that Spain has more money!!

[Siamang]

fantastic results - keep active and enjoy life .

[janet65 in reply to Siamang]

Thanks for replying with your help.

[t1gernidster]

I’d give my right arm for those scores. Avoid AA, (I do wonder if you should ever have taken it) take the necessary supplements and keep exercising.

[janet65 in reply to t1gernidster]

Thanks for replying. I've certainly had many years on AA, for the good or bad. I first had it in Spain so around 2002 until 2012. Then I was taking a lot of steroids for my breathing issues so restarted it in 2017 until 2021. I also had quite a few years on HRT which at the time was thought to help the bones long term?

[t1gernidster in reply to janet65]

Your time on HRT may indeed have helped you a lot. I was on it for many years when I was in my 40s and 50s. Three years ago it was discoverers by an astute GP that I had hyperparathyroidism and the gland was subsequently.removed. My scores are not wonderful but considering the damage that hyperparathyroidism can cause I thnk I have escaped lightly. I have now been back on HRT for the last couple of years. I am 74.

[janet65 in reply to t1gernidster]

Isn't it hard to get proper thyroid treatment at the GP level. I'm glad you had it dealt with before further damage.

Have you been on HRT long enough to delay the menopause? I first started at 38, family history of early menopause. Came off it after 5 yrs. Then seemed OK until I was 48 and it came back with vengeance! A few years later I read an article about my brand being linked to cancer. I went cold turkey....I'm not convinced the hot flushes every go away for some people!!! I'm better than I was but still have my moments! 😅

[t1gernidster in reply to janet65]

Hyperparathyroidism is not related to the thyroid gland at all. It is a gland but its function is to regulate calcium in the blood. When is doesn’t function properly the blood has too much calcium and it doesn’t reach the bones which is why it is so vital to ensure it’s working properly. In the NHS there is meant to be a test whenever someone is diagnosed with osteoporosis but it doesn’t seem to happen. No surprise there then! When my OP was diagnosed I was automatically prescribed AA despite having suffered from lymphoma of the stomach and I was assured it would be safe by my endocrinologist. I refused it, and also turned down an infusion having read of terrible side effects from that too. I was later told, when I had a REMS scan that I had scoliosis which precluded an accurate DEXA reading (I should have been told at the time) and that AA would have done dreadful harm to my poor stomach! I now have an understanding GP now who happily prescribes HRT patches and I find some reassurance in that. I take supplements and exercise and have regular treatment from an amazing osteopath who keep me right. So far I am pain free and mobile - long may it last. I was on HRT originally for about ten years in my forties and fifties and when I stopped I had a year of flushes but they were quite bearable and it didn’t last long.

[janet65 in reply to t1gernidster]

I'm sorry to read your history. As you said, long many it last!!!

[Dorsetlass2300]

Hello Janet

Your scores are good but I understand your concern of having little information to go on. I too had a Dexa scan in December 2023 after a drug holiday from Alendronic Acid, which I requested. My scores had improved in the 2 years when I was not taking AA, which put me into the Osteopenia range. But like you all I got was a text message from my GP to say keep taking the calcium (Adcal) that she prescribed. Nothing else! A few years ago I organised to have my medical notes made available to me and they are on my NHS app. And lo and behold that is where I found my Dexa scan results\scores.! I also learnt that I would not be called for another scan for 5 years! That is along time to go without any support. My notes mentioned that my hip had worsened during these last 2 years more than expected for my age. So I now know where I stand and feel a bit more in charge/aware of my bone health and will continue with the calcium supplements, Vitamin D supplements in the winter months, eating calcium rich foods and doing some targeted exercise for my hips. But it’s not good, is it to be given such scanty information?

Lastly, I was given the opportunity to take part in a survey run by Keele University, who are researching how people with osteoporosis are receiving their scan results. Talking to the researcher it is clearly very different depending on where you live in the UK and people find the scores very difficult to understand.

Hope that helps and I wish you well.

[janet65 in reply to Dorsetlass2300]

Thank you so much for your help. That's very interesting that your numbers improved for the two years you didn't take AA. Oh yes, lots of things seem to be hidden in our notes. When I changed areas and GPs I had a brief printout, I'm not sure why now but the reading was interesting. Two notes in there were outright lies!! I didn't challenge it though. That's interesting that research is being done on how patients receive their results....clearly an issue that hopefully will be resolved.

Good luck to you and keeping well.

[MyStar86]

I agree with what everyone says but for peace of mind have a look on the ROS website for a detailed breakdown but the basics is:

What your T-score means

+1 to -1 - Your bone density is in the normal range for a young and healthy person.

-1 to -2.5 - Your bone density is slightly below the normal range for a young and healthy person, also known as osteopenia.

-2.5 and below - Your bone density is in the osteoporosis range.

So your scores are well within the healthy range which is amazing. Why did you start having DEXA scans in 1997? Were you diagnosed with osteoporosis? How long had you been taking AA because those are amazing results to have if you once had osteoporosis? Do you know what your t scores were in 1997?

The link to ROS which has all the information you will need:

theros.org.uk/information-a...

Have a look through the website x

[janet65 in reply to MyStar86]

Thank you so much for your reply and especially the link.

I'm really pleased that at my age (72) my bones are still doing well.

I seem to have had a life of 'unfortunate accidents' involving my bones!

Started aged 28, fractured coccyx, next broken small toe, 1997 fell down stairs sustaining 2 fractures in my upper back. This was missed by the hospital but later seen. I went to get a dexa scan privately because there were questions about how I'd got these two fractures (when I fell I went up in the air and landed on my upper back with a huge thud.) That was the answer!! I do have the scan and the report said a very well mineralised spine and the bones of a 30yrs old lady (I was 46) So no worries there. A few months later I left for Spain. All my scans were in the normal range there too.

On my return to UK in 2012 I was moving too many packing boxes and hurt my upper back again so was sent for a scan, totally normal again.

2015 managed an avulsion fracture in my ankle/foot.

My next scan was 2019 at the Royal Brompton as part of a days testing for possible biologic injections. Again the scan was fine.

In 2020, moving house again I wasn't able to lift because I'd had a cancer op so decided to bend over an push a heavy box! I felt I'd done something awful to my upper back but thought maybe strained it? The following year another old fracture was seen on a ct scan, from where I'd pushed the box. Thankfully, I had an explanation for that one.

2021, I had a thumb problem. GP thought it could be a splinter fracture so had an xray. They declared osteoporosis in my right thumb!! Hence the next dexa scan. (I actually had the release procedure for the thumb and no further issues). The scan in 2021, the report was very comprehensive but actually said my probability of a hip fracture in 10 yrs was 1.8%.

Sorry that was so long....I got carried away....😅

[Fruitandnutcase]

I certainly wouldn’t take any osteoporosis medicines with scores like yours and I very much doubt that it was taking AA that has given you your scores.

[janet65 in reply to Fruitandnutcase]

Thank you so much for replying. I really didn't consider whether I needed the AA. I never had any side effects so didn't question it. I was told by a physio in 1997, it's the weight bearing exercise we do in childhood that counts for strong bones.

Good luck to you for keeping well.

[Fruitandnutcase in reply to janet65]

Alas, I think we’ve got to keep doing weight bearing exercise all of our lives. You really are lucky to have such good bones for your age, good luck for the future 😊

[janet65 in reply to Fruitandnutcase]

My exercise amounts to walking these days. I do have a stand up stepper machine, I do about 4 mins several times a day. My breathing doesn't allow me to do longer at a time.

[Fruitandnutcase in reply to janet65]

You’re doing well doing as much as you can. Just keep doing that.

[Cockerpoosarethebest]

Hi. You are so very lucky. I too would give my right arm for your readings. In May this year I am going for a REMS scan which everyone says is so much more informative. Yes you have to pay but not to worry. I live in East Devon and trying to see a dr here since Covid is virtually impossible. As a side note my young 20 month old grandson was taken to the local MIU last weekend only for my son to be told we don’t treat anyone under two !! Totally unbelievable. So hope you stay fit and well. Good luck. If you wouldn’t mind letting us know which supplements you take I would be most interested. Many thanks. Jane.

[janet65 in reply to Cockerpoosarethebest]

How technology is moving on Jane. Hopefully, the REMS scan will be very informative.

I hear so much about poor surgery practice but am thankful that my surgery is fully staffed, answer their phones and same day appointments are still available. My daughter who lives in another town phoned her surgery and was 800th in the queue!! Wherever is a little seen...A&E? I'm in East Sussex.

Re supplements. I've been taking these for years now. Adcal, 1000mg fish oil, Vitamin E 200iu, Vitamin D3 4000 iu (I'm optimal range) Winter time, Organic Acerola Vitamin C (I can't tolerate ascorbic acid). I like to take a tbsp EVOO in a smoothie which is just fruit and 200ml soya milk. I like to think this oil is good for my joints and as I don't have any arthritic joints maybe that's helping.

[Cockerpoosarethebest]

thank you so much for your reply. You are so incredibly lucky with your surgery. Here you wait a minimum of three weeks for a telephone consultation !!! Don’t ever move !!!!

. Hope you stay well and I look forward to my REMS scan. Fingers crossed. Take care and best wishes. Jane