Newly diagnosed and worried about treatment - Bone Health

Bone Health

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Newly diagnosed and worried about treatment

Kimlolly profile image

Been diagnosed with osteoporosis just two weeks ago I’m 55 and dr sent me for bone scan due to my worries with teeth and gums X-ray showed bottom left jaw was weak and causing problems for 18 months have been having teeth issues one tooth removed due to decayed one wisdom tooth removed as dentist thought this was causing my headaches another wisdom tooth slightly wobbly but still in my teeth are sensitive and every week or so one tooth hurts so I’m constantly at dentist think she is fed up of me now 😂 she has referred me to a dental hospital but still waiting 3 months later so now have osteoporosis and my dr suggested tablets or intravenous drip twice a year so I opted for this but on doing my research I found all treatment can cause jaw and teeth problems and now worried sick about this as I’m constantly worried about my teeth as it is to the point it’s made me depressed and now this I’m so scared 😟 my dr hasn’t said my score or where I have it I’m hoping to speak to her this week as she knew I had issues about my teeth so never mentioned what medication could do I’m hoping and praying I can just do it myself up my calcium etc I started weight bearing exercises since reading up on it and eating better as I am slim and have in past cut out a lot of food due to worrying about putting weight on since going through menopause I also started hrt in June as read this is good for teeth issues wish I had done this when started going through at 50 might not be having all these issues can anyone give me any advice

21 Replies

Gosh, Kimlolly, I really feel for you. A diagnosis of osteoporosis is bad enough without worrying about your teeth too.

First of all if you live in the U.K. you are legally entitled to have copies of all of your test results so you need to know your DEXA results.

Has the hospital where you had it done not been in contact with you? I was contacted by my hospital, my doctor has only ever issued prescriptions for drugs recommended by my hospital.

You could also find out if your hospital has a fracture liaison nurse who will talk to you about your treatment etc.

Your doctor should also have blood tests done to rule out things like coeliac disease, hyperparathyroidism, low vitamin D and calcium levels - I’m sure if I’ve missed anything someone else will tell you.

I hope your dentist isn’t fed up with you, if she is find one who isn’t. I went to see my dentist before I started taking bisphosphonates and he didn’t appear to have any opinion on them at all which surprised me I have to say but you need to ask your dentist for advice.

Look on the Royal Osteoporosis Society (ROS) website, it’s a good thing to join too, there is a link on here somewhere, they have loads of really good information leaflets about things like diet and exercises but I think you need to get a hold of your DEXA scan results and go from there. Good luck with it all.

My dr just called me in and told me had the results back and got oestopararsis but not given me results etc going to try and see her this week to find out my dr has booked me on for blood tests this week and would change my dentist but it’s hard to find another and really would like to try do it myself but like you say need to find out my scores etc will update once I know

I understand your feelings as I too have recently been diagnosed with osteoporosis. I’ve been given Adcal D3 and Alendronic Acid. I’d just had a dental check and thought that it was ok to start AA. After further reading on dental issues Ive got an appointment with my dentist this afternoon and I’m not taking AA until I’ve had treatment. I grind my teeth at night and this has caused numerous dental problems.

I was told my fracture risk is 36%and I’ve got osteoporosis in my left hip -3•5 and lumber spine -3•1. I don’t have copy of mine but will ask my GP for this.

Further reading is the way to go.

Also good advice from people here is a great help.

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Kimlolly profile image
Kimlolly in reply to Elaiworthy

Thanks for your reply yes I too must grind my teeth even though I never thought I did and wear a night guard it’s a hard one knowing what to do about treatment

Elaiworthy profile image
Elaiworthy in reply to Kimlolly

Back from my dentist, she said with my loose teeth she would leave them if they’re not causing pain and when they’re loose there would be less trauma when removed. So looks like I’m hanging on to the for a while. I usually wear a mouth guard too. I’ve been attending the local university dental hospital and they built my teeth up so the stress of grinding is more evenly distributed which is great, but I’m now waiting for a new mouth guard and the students are on summer break.

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Kimlolly profile image
Kimlolly in reply to Elaiworthy

That’s ok then it’s horrible when you have teeth problems and osteoporosis isn’t it if my teeth had been good and no problems would probably have tried the treatment for osteoporosis with no hesitation but as I do I’m scared of taking anything

ROSAdmin2 profile image
ROSAdmin2Administrator

You might find it useful to speak to a Specialist Nurse on the Royal Osteoporosis Helpline. 0808 800 0035. They are available from 0900 to 1300 and 1400 to 1700. They also have lots of information about ONJ.

Kimlolly profile image
Kimlolly in reply to ROSAdmin2

Ok thank you will do

Hello KimlollyI see that it has already been suggested you are checked for hyperparathyroidism and that’s good. Please make sure you are as this is an often overlooked cause of osteoporosis and medications simply won’t help (if you do decide to take them - many of us don’t) until this is treated, in fact they can be detrimental the condition. A simple blood test will indicate the presence of excess calcium in your blood if this is the case.

I too discussed the effects of AA with my dentist and he wasn’t keen for me to take if if it was avoidable.

Good luck.

Excellent advice it is very much overlooked and a simple op should put things right 🙂

Not heard about that well got a blood test tomorrow so hopefully know more then

Hyperparathyroidism is a big cause of osteoporosis ( and kidney stones ) the tiny parathyroid gland ( NOT THE THYROID)over produces parathyroid hormones which causes your body to release calcium from your bones. A normal parathyroid gland switches off when there is enough calcium in your blood. A faulty gland doesn't switch off and your bones continue to release the calcium from your bones leading overtime to osteoporosis. The unused calcium ends up in soft tissue and kidneys doing damage of its own. It causes aching bones, brain fog, poor concentration, headaches, stomach problems,irritability anxiety the list goes on. A simple op will remove the faulty parathyroid gland/s and they say over 2 years post op your bones will recover. Get your GP to check your calcium and if it is out of range get him to test your parathyroid hormones and vitamin d. This is what has happened to me I am 6 weeks post parathyroidectomy. You may not have calcium problems but at least rule it out. Please research AA and other bisphosphanates before taking them. You might want to look at taking vit d boron and magnesium as supplements but I get my vit d calcium and parathyroid hormone checked first. Good luck x

Will do as those symptoms are what I had put it down to menopause so decided to take hrt been on it 9 weeks so maybe it was that and not my menopause 😂yes I ordered some boron tablets already take magnesium tablets still undecided about treatment got the receptionist at my drs to print my DXA report as my dr off till Wednesday not that I can understand it but basically my T score is left femur neck -2.7 left femur total -2.5 AP spine -1.0 major fracture 7.7% hip fracture 2.5% presume this is a 10 year probability

As an osteoporosis nurse said to me ' you are only just in the osteoporosis range ' which I found strange. My surgeon said as I have no other risk factors being a non smoker healthy weight and active then my bones will recover. You don't have to take medication. Weight bearing exercise a good diet rich in calcium along with supplements and you may well be OK. Only you can decide but many refuse to take bisphosphanates because although they strengthen bones they can make them more brittle. Many people are perfectly ok on them. But before deciding I would get your calcium checked. ( they also use AA temporarily to lower calcium if its very high which could mask hyperparathyroidism. Have a look at hyperparathyroiduk.com or parathyroid.com for info re high calcium x

Thank you will hopefully get some answers from my blood test have tried ringing the help number but can’t get through so emailed them

What is going wrong with the NHS? A decade ago I had similar problems; when diagnosed I was told there was nothing I could do. Luckily I was visiting a friend in Italy, who marched me off to the local clinic who set me off on the right pathway and I found there is lots to be done Yet your experience tells me that some hospitals don't seem to have kept up with the times. I agree that you should contact the ROS - their nurses are brilliant. And if it is any help I have written about what I found out on aftercancers.com/osteoporosis

Kimlolly profile image
Kimlolly in reply to veriterc

Thanks for you reply I know it’s so confusing my dr isn’t really up to date with it either or checking about the medication and my ongoing jaw issues

Sadly today it is often up to us to sort out our medical problems. Good luck with this.

I know and thank you you too

I’m sorry you’re having so much to worry about, osteoporosis is one of those diseases where there is no one definitive treatment which suits everyone and certainly having issues with your jaw makes it harder to choose the best treatment. It would seem that your DEXA scores are not too severe. That’s not to say they won’t get worse without treatment but I think at 55 you’ve started a good treatment with HRT which gives protection to your bones. It’s the loss of oestrogen at menopause which causes bone to lose density. I wish I could have taken HRT up to age 60 and saved the alendronic acid for the post 60 years. It may be something you could discuss with your GP. Having you thought of seeing a rheumatologist to get further advice? I paid to see one recently and found it very useful.

Thank you and no I haven’t never heard of one will have a look and see if any close to me

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