I was with my elderly mother at her regular bone scan and as she has severe osteoporosis the nurse explaining her score turned to me and said you should get a scan too as its highly genetic. I was firm at my next hospital appointment with the endocrinologist as i have auto immune thyroiditis that I needed a scan he was reluctant but agreed and i got a bone scan
Yes turns out I have osteoporosis too and my scores are
Spine T score -5.oo9 Z score -4.098
Right hip neck of femur T score -1.614 Z score -0.638
I have DV7 Grade 2 morphometric fracture
LV3 Grade 1 morphometric fracture
I have now been taking Alenronic acid for three weeks and Vit D3( invita D3)
I have always exercised , walked, done zumba and yoga for years and also swam but I know thats not weight bearing.
i was shocked to say the least I have had disc problems in the past and thought the pain in my back was due to this reoccuring although the usual swimming had not helped it as it normally does and i had seen my Gp who did say I think ts something else but didnt know what and referred me to physio who said my back muscles were completely out of alignment and gave me exercises which did help.No one knew it had fractured. I am guessing its down to genetics and my thyroid which is difficult to manage at times.
Any advice on scores or words of encouragement on getting my score improved gratefully received.
Winnie, With the known link between your thyroid condition and Osteoporosis (OP), and also your possible genetic predisposition to OP it's surprising that your endocrinologist was reluctant to order a dexa scan. Your spine T score (-5) shows significant OP. Was it then your endocrinologist or your GP who prescribed AA? I know that this med. is the most commonly used one for OP but often a stronger one can be prescribed if OP is severe - at least for the initial few years of treatment ( meds. like Prolia or Forteo). It is of course possible that your endocrinologist has really good reasons for the choice he has made. . . . It might just be helpful to talk this over with him at your next apt.
It's really good that you're an active person who regularly exercises. No big change required to initiate there!. However if at all possible, if I were you, I would see a physiotherapist who specialises in OP and get her to outline the very best exercises for you taking into account your 2 fractures. . .Even one apt. would be beneficial.
Apart form that, try and avoid forward bending (like tipping your toes) and spine rotation or twisting. There is a great series of little videos on the NOF (Canada) site called " Too Fit To Fracture" that are really good - and safe. Check that out. You could also check whether your local health clinic or hospital holds exercise programmes for OP patients or, if not, whether your national OP Association has a helpful website with information leaflets and a Nurse Specialist you could call with any questions you have. You must have lots!
Finally it is really possible to have a good life with OP so don't panic at all. You do however need to take a bit more care of yourself and think twice before you start bungee jumping - at least 'til the fractures heal!!
Kind Regards, J
To add to Juno's excellent comments, add Vitamin K2 to your supplemrnts. It's what sends calcium into the bones.
First of all Winnie, so sorry that this has happened to you and understand how shocked and scared you must be feeling.
I won't repeat what has already been said so I will talk about diet.
There is a lot you can do with your diet to help you.
I will just list some things to include in your diet every day.
Leafy greens, yoghurt, bone broth, jelly, cucumber skins, prunes and avocados.
One other thing that will help you is to do your own research to empower you which will allow you to feel in control.
All the best.
Thank you so so much for these really helpful posts where would we be without the internet!
it was advice from a specialist in osteoporosis given to my Endo he said they looked at my scan and advised alendronic acid tablets weekly, however I never take advice from any doctors as gospel, I have changed many Endocrinologists and self treat with one who monitors my condition and i am so much better than I was on any of their medication regimes. I will research these drugs and when my appointment eventually comes through I will be asking them about these alternatives if my score does not improve.
I was very upset and frightened as I know what my mother has gone through and I have nursed her after many painful fractures but she is still hanging in there at 83 and an inspiration. She was upset too and I still get moments of worry so all your replies mean a lot.
I went back to yoga but could see the worry on my teachers face when I told her my diagnosis,so I will consult with a physio and get some advice about adapting certain positions. I will order my vit k2 as another (!) supplement I take quite a lot know Ha! and although my diet is good and I have always eaten healthily I will ensure I up all the foods mentioned I love avocados anyway!
I thought I was doing everything so I would not get this but here it is anyway and I know my thyroid is the cause it's a tricky one to get the balance right.
Thank you again for all the great advice and reassurance, it has really helped me on a bad day.
Hi Winnie, remember it's better to have something wrong with you that you can do something about than something wrong that you can do nothing about!!!
And you are NOT your mother. A lot of treatments are available now that most likely were not available when she was first diagnosed.
J
Thanks Juno this is true ! Just a shock but getting my head around it now and as you say hopefully new treatments breaking through all the time although that's probably not the best analogy ha!! Thanks again for advice
Like you, I too had a massive shock to discover I had OP and it wasn't even in my family. I think the others have pretty much covered everything and given lots of good advice. It is not the end of the world and despite 2 vertebrae being fractured, at different times, I do pretty much everything I have always done. Gave up the bike, due to balance issues and with Junos advice, gave bungie jumping a miss. Good luck Winnie
ha ha yes will def be giving that a miss too
Just hoping to get back to zumba but its the tiredness from the thyroid issue stopping me not the osteo at the moment . Now I have two "manageable" conditions its not easy but I am carrying on and not panicking Just hope I can see improvement or at least no more deterioration on my next scan, Some of the advice on the internet is confusing with some saying avoid biphosphate medication and others taking it in the hope it will help. I am taking it because I am scared it could get worse but I had to learn a LOT about auto immune thyroiditis when I got it so will treat this in the same way.
Thanks to all for replies .
Just recently an interesting discussion about osteoporosis drugs has been going on at healthunlocked website. It's in the polymyalgia forum. There are always ongoing discussions but this one has some useful links: Bone density medications - an interesting review article
Hi Winnie, Anyone who takes medication for any condition does so in the hope that it will help. And, in my own case, and others, it certainly has done so. But, it should be taken alongside other advised lifestyle changes where possible. However, with significant OP and fractures, I would start with the meds. and then move on to researching and planning the rest. . . J
I think research is the first step. Don't take something if you don't understand what it is likely to do, not just what it promises to do.
Well meds. improved my woeful T-scores by 11% - and I have had no fractures.
So it did what it promised.
If someone who has similiar scan results decides to wait (and for how long??) for more research findings before they take any meds.,I would fear that further fractures could be just around the corner . .
Even the constant fear of fracturing can have a really debilitating effect on a person's life.
And of course I am in no way implying that diet and exercise are not really important also.
Kind regards, J
I didn't suggest people actually do medical research, I'm surprised you assumed that. I meant of course that we should read and learn as much as possible so we know what we're doing. I didn't need drugs to improve my DXA scan result. And I suppose it was the research I did, the reading and discussions, which gave me the knowledge to achieve that.
"Do medical research" .... or wait for others to do so...
Oh for an edit button.
The meds have done "what it said on the tin" for me too, thankfully. I think, it is a very different ball game entirely, when our scores reveal we are well into the osteoporosis bracket. I certainly did not want to live the rest of my life wraped in cotton wool sitting on my worn out "declining chair" fearful of doing anything incase I broke something else. And, when breakages can occur, just pegging out the washing or having a massage, it was just too scarey. The last 3 days I have walked 50,000 steps and this morning, I am off to healthy hearts, an aerobic class for the over 50s. We are working equally hard to reverse our scores with diet and exercise. We just need a little more help to get into a less perilous area. You have done really well Juno and just because you used meds to help, takes nothing away from your commitment to helping others. Keep up the good work.
This is for Anhaga as I cannot seem to get the reply button to work.
You have been a godsend in this forum for a long time now.
Your expertise as a librarian has been invaluable.
Everyone has benefitted from your many hours of scholarly research.
Sometimes it is hard to get recognised for things we do to help people.
Research is invaluable. The internet is amazing.
You can now type in a few key words and read many varied sources but what we need from people like you is the knowledge and expertise to sift through the myriad of information and critique it. Some sources are more reliable than others.
I have that ability too as a teacher but also as a person who studied at Masters and even PhD level. With the latter I was unable to publish as I had to leave one state and go to another to help a grandchild. But I have written and presented.
I know what a librarian is and what you have done and am appreciative of your endeavours to inform everyone how critical it is to research before taking any of the drugs.
That is the purpose of the internet.
And maybe you can get into more sites than non librarians can including me.
Thank you for all you do Anhaga.
No one is criticising Anhaga. Most of us appreciate all her input to this forum and many times I have written thanking her. No one is telling you you should take the meds, but there are several people who read reviews printed here who are afraid to voice their opinion because it is often so bias, against the meds. Yes you were a teacher and I was a nurse. So what. We both have osteoperosis and are dealing with it the way we have chosen to deal with it. Anhaga has never had osteoperosis and if I had been in her position, I certainly would not have taken the meds. I am working just as hard as anyone with my diet and exercise along with taking the meds. But this is my choice. When Anhaga improved her score, many people congratulated her on this forum. When I improved mine, I recieved 4 private msgs. Nothing from anyone on the forum. So come on Kathleen. We all have the same goal. Encourage each other, at different stages of this condition rather than condem some of us because we don't agree with you.
Thanks Kathleen. I have to say that all I have that some of your others may not have learned yet is when I was at work we were trained how to recognize websites that could be trusted, and weed out those which might be questionable. This is not 100% foolproof, but it does help. It's absolutely amazing how much information is on the internet now. And I note that with its recent changes Patient doesn't seem to block links from nih (national institutes of health) any more, awaiting moderation. So I think you can take that as assurance that anything published through nih is going to be valid. It's also good to look at dates. Something published in 2000 might have been superseded by additional research since then. Or, possibly, validated further.
So one of the things I do is, there are "popular" websites where people who may or may not be qualified or who may or may not be seeking to make money from vulnerable people, and anything you read on sites like that needs to be checked against the research.
The only reason people reacted as they did to my experience is because it's considered by medical establishment not to be possible to increase bone density without drugs. This in spite of research showing otherwise. And of course we are all pleased for you and for anyone who improves their bones, with or without drugs, without any adverse side effects.
Peace!