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.

@thankyouforthedayz Just for information, there are some specialists who would not use bisphosphonates on you as you are young and not yet osteoporotic. That's when you T score is below -2.5

They would suggested exercise, HRT and diet first to see how you reacted to those.

It's a good reason to consider HRT when you reach menopause as it's a long term benefit. I didn't know about HRT protecting bones. Can't take it now as I have had breast cancer. Probably too old anyway as menopause was 10 years ago.

read up about bone density medication.
they are very effective but not without risk.

if you decide to go for alendronate (or others) you need to get your teeth checked up and anything dental repaired and healed before you start treatment.
also get your ears checked.

@MarshmellowMoon yes, osteoporosis or osteopenia is usually reversed post operatively. Essentially your body is producing too much PTH which causes your calcium in the bloodstream to rise. It leaches calcium from your bones. Post surgery, many people have low calcium for a while and need to take calcium supplements or increase calcium intake (with other necessary supplements such as vit d and magnesium) to help bones to recover. I was diagnosed after blood tests showed high calcium and PTH, but I did also have a 24hr urinary calcium test. I imagine with a high calcium level for two years it’s certainly possible that you have primary hyperparathyroidism. In a healthy person, if calcium is high, PTH should be low and vice versa. If both are high it is concerning. That is why they need to be tested from the same blood draw. Also, if they DO diagnose you with primary hyperthyroidism do not let them rob you off with a ‘wait and watch’ approach. You need a referral to an experienced parathyroid surgeon as surgery is the only cure.

@MarshmellowMoon and yes, my bloods were clearly off. For some people it’s not as easy to diagnose, but will only get worse with time. Most people will feel rubbish with a calcium level of 3 and need some kind of immediate treatment. You can also have primary hyperparathyroidism with a normal calcium level, so at 2.5/2.6 definitely worth having PTH also checked. I am fully better now.

@JinglingSpringbells
Thanks for your response. I appreciate you don't want to write any personal history. I've seen you enough on many many HRT threads and know your skills and knowledge.

Unfortunately you haven't told me anything I didn't already know. I'm not sure quite what to do now. Another nice poster posted questions to ask at an appointment. I already had all those written down. I just can't seem to get any meaningful info from anyone.

@Oblomov23 Where are you now with your treatment?
If you are on HRT and doing all the lifestyle stuff too, what's the plan?

Are you having another DEXA scan in a couple of years after the last one?

Are you on any drugs like bisphosphonates? (Sorry for asking and although I can recognise your username, I can't recall what you've posted about before.)

Do you see a rheumatologist?

This is pretty much my conclusion. The best you can hope for is to slow deterioration. Bone loss is normal as you age and if you can stop, or slow it that means the treatment is working.

My last Dexa was in 2021.T score in spine is -3.9 and femoral neck is -2.9.
I am a year overdue seeing my rheumatologist because of NHS issues. My RA is very stable anyway. My GP didn't see any point in another Dexa because a)we know I have osteoporosis and b) I am on treatment.

@Cephalaria Would your GP not consider that a scan shows any improvement (or none) and it may be necessary to change medication? There are some changes like vertebral fractures that can be hard to find unless on an Xray or a scan. If these occur, stronger drugs can be offered which are only licensed for certain levels of osteo.

Sorry if this isn't relevant but in case it is...!

Yes I am now under rheumatology after breaking my back twice. They have ordered dexa and blood tests. I have been on HRT for a few years, they did a dexa scan in 21.

Thanks @JinglingSpringbells . I don't think that's an issue because I had a back xray and MRI last year, turned out to be two slipped discs and no fracture.
I will ask Rheum when I finally get to see them. I believe the wait for DEXA scans in this area is 10 months...

@Oblomov23 Have you spoken to the nurses on the helpline of the Royal Osteoporosis Society? They can advise you on what treatments you are eligible for now. There is also a list of all the drugs on the website.

If you have had 2 spinal fractures, you are probably eligible for one of the newer and more powerful drugs, rather than the other types.
These new types are usually by injections, either daily (do it yourself) or once/ twice a year.

@MarshmellowMoon I think they have shown it's the boron in prunes that helps. You need to eat around 10 a day (that was in the study.) That info was around several years ago, as you say, but most GPs are not specialists in anything and are unlikely to know this sort of thing.

However, for those of us with naturally active bowels, 10 prunes a day would be impossible!

I don't think bone loss is due to inflammation as such, but women with RA are at a higher risk of it. Bone loss is complicated but estrogen plays a huge role in it because the 'remodelling' of new bone can't take place without it.

@MarshmellowMoon that is fascinating thank you. As it happens I eat a shedload of prunes! I take diltiazem which has a side effect of constipation. I use to take lactulose but manage it now with a high intake of fruit and fibre plus prunes or prune juice every day.
I also have RA which is currently stable and my inflammatory markers have never been lower.
Lets hope there is some impact on bone loss as well.
<heads off to study all those links>

@MarshmellowMoon thanks for the links. You're preaching to the converted abut gut health (ie to me!) as I've had mine analysed and have a full list of all the bacteria. I got a very good result. I'm 100% behind what you say, by the way.

Just popping back onto this thread. I'm really glad to see it's helping others and thank you to everyone who's given such great advice.

One more question if I may. I've been lucky enough to get an appointment with an rheumatologist specialising in osteoporosis on Monday. Thanks to ROS thread I've already got a short list of questions but I'd be really grateful for any more advice on what to ask.

Thank you all again

Thank you Jingling. I will phone them.

@JenaWren I am another one diagnosed with Osteoporosis, do you mind sharing where you are at now and how the appointment with the rhumatologist went.

I got the diagnosis just this week, apparently extensive and advanced for someone my age, similar age to you. I am absolutely shocked and gutted.

I am seeing my GP on Monday before I start the medication prescribed by the gynaecologist, I just want to be sure it is the right one. Gynae also referred me to a physiotherapist. I think I will ask the GP to also refer me to a bone specialist or maybe a rheumatologist like you. I have a history of overactive thyroid, although it is fine now, I have exercised with weights for years, have had a healthy diet, no family history of osteoporosis so it is a huge shock.

Since I found out, I have been researching like a madwoman and the drugs scare me. Along the way I have found studies that are now linking Covid 19 with rapid onset of Osteoporosis and I wouldn't be surprised if that is what has caused mine, I had Covid in the very early days and had long covid for about 6 months with a lot of neurological issues (all fine now).

I will also ask to have the parathyroid checked also, that was one link I didn't come across in my research.

.

oof @langflug
it's so scary but don't be disheartened.
it's hreat that your gp is on the ball.
physio is fantastic and can help a lot.

book yourself a dental check up as the medicines, if you chose to take them, means that your mouth needs to be in tip top shape.

the connection to covid, i.e. a severe chronic inflammation makes sense.

will be interesting to see studies on that in a few years time.

@lanflug it's so scary isn't it? I'm so sorry you're dealing with this too.

I'm still working my way through it all - there's so much information out there and it's hard to work out the right thing to do.

My rheum appt was ok but he really downplayed it. His advice was to take the Alendronate and all the other sensible advice.

I'm still working out if that's the right thing given my age but I've started it while I explore other options - eg HRT.

ROS are good - it's ok (and necessary) to keep talking while you work your way through this.

@JenaWren How did your appontment go?

I finally have a rheumatology appointment, a year overdue. I have RA so that's why I see a Rheumy but I'm going to ask for another dexa scan to see how the drugs are working (or not) after two years. A friend who was on alendronic acid had a repeat scan and they decided it wasn't effective enough so she now has zoledronic acid infusions. I don't want the stronger drug but it's a balence of risks.

@langflug I recommend you see your dentist as well before you start. They will want to do anything that';s needed beforehand. Mine also sees me every six months for checkups.

All I can reiterate is that you look only at reputable sites and don't take note of scare mongering gossip. The Mayo Clinic and the Cleveland Clinic have good information.