Trouble handling my Hashimoto’s and all that goes with it . Also have Osteoporosis and had Prolia injections every 6 months in Australia for 6 years. Back in the UK was told 'We don't do that' so only calcium tablets. Well 6 fractures later and an inch shorter. Found out that you should NEVER just stop Prolia injections as it can lead to compound fractures of the spine. Having IBS just compounds my problem. Each day I wonder if it's going to be a toilet free day or take a book , if you know what I mean.
I am hoping to gain some real strategies from this site.
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Unfortunately I believed my Doctors surgery so just carried on taking my usual calcium tablets. Last Christmas I was ill in bed for 3 weeks but the constant coughing caused such sharp pain in my back I couldn't turn over in bed and when I did attend the surgery an appointment with a physiotherapist was made at hospital. Was instructed to go back to the Doctor and get strong pain killers before he would touch my back. I was diagnosed with a seized muscle .........Well after ending up in the hospital with low haemoglobin and high blood pressure and after a colonoscopy, endoscopy, CT scan , MRI , blood transfusion and iron infusion and a DVT found in my right calf , an off hand question of "what are you taking for your compression fractures "
He then said that the CT scan found fractures in T7 T12 and L1,L3,L4,L5.
The hospital has suggested Prolia injections due to my IBS and previous ulcers.
I am still awaiting a response from my Doctors surgery.
I'm not an expert on osteoporosis and haven't (yet) been diagnosed with it although based on my family history and my own medical history I probably won't avoid it. My only experience of osteoporosis is hearing from my late mother about her very severe osteoporosis. She had multiple spinal fractures for which there seemed to be no help. One doctor said to my mother when she was in excruciating pain after a fall, "Well, what do you expect me to do about it?"
Mum's hips were destroyed and couldn't be replaced. The reason for the lack of help for her hips was because mum had no good bone left to screw hip replacements to, and I'm determined not to end up like my mother if I can avoid it.
I do remember there was one treatment my mother got that made her jaw necrotic and all her teeth fell out with the exception of one that she died with. I think the drugs causing that were called bisphosphonates.
One thing that might only be of interest, rather than actual use :
I agree to a certain extent that they are very ‘pro osteopprosis drugs’ which is fine if you want to take them - which I don't but there is a lot of good information on the if you look. I’d say they are very conservative and not exactly open to new ideas and I think big pharmaceutical companies have such a grip that it is hard to find anyone brave enough to do independent research.
I am absolutely shocked that you were told that - it is absolutely not true. I hope you have made a fuss and that the person responsible has been identified and is being re-educated! It is fairly well known that once you have had I think it is two injections you can’t stop without going onto a relay drug such as a bisphosphonate and you absolutely must have your Prolia (Denusomab) injection bang on time - you simply can’t afford to miss one or even be late. Are you taking anything else at the moment or just ‘their calcium?’I am so sorry to hear this has happened to you. It really is appalling.
I tend to agree with Hibs1 about the ROS I’d say it is built around the various drug treatments but never the less there is still a lot of useful information on there too. It would be well worth going on to that site.
As well as calcium tablets ( I don’t take the cheap and disgusting ones I was prescribed - I take a half dose seaweed based calcium tablets to top up my already not bad dietary calcium and I but my own D3 capsules ) you will need D3 as well as whatever you take for calcium) I and a lot of others on Bone Health take some magnesium, some boron and K2Mk7 to direct the calcium to my bones as well as other odds and ends and I now take prunes - see below prunes.
The site that I really like is Margaret Martin’s melioguide.com you will find a huge amount of really useful information on there and she is a really sensible person, she has exercise videos and books and although I’ve seen some people complaining that she sells things - there is a lot that you don’t have to pay for and it is all really sound information. She is a Canadian physiotherapist who now lives in Portugal.
I’ve been doing that since I read it, fortunately my body can cope with 100g prunes, believe it or not I’m 75 and I had never had a prune before I read that and it turns out I actually don’t mind them so that might solve your ‘toilet free or take a book’ days.
I just can’t say how sorry I feel that this should have happened to you through the ignorance of whoever you spoke to at your surgery. It is simply shocking.
Can I say well done for finding TUK - it has to be the best and most supportive group on Healthunlocked.
Thanks for your help. I do follow Margaret Martin and take D3/K2. It has got to be algae as I am allergic to Lanolin (wool ) Found that out in hospital after having my 3rd baby. I couldn't breastfeed first 2 due to inflamed nipples. The male nurse asked if I was allergic to anything and when I replied "wool" he said did you use the Lanolin advised pre birth and were they sore ......duhI cannot reverse the damage done to my spine or regain my lost height but I can choose to work with the new me and enjoy life . Great to know about prunes, I will definitely look into them. I am 70 years young and try to wake up with a smile (sometimes through gritted teeth haha).
We discovered after allergy testing that about my husband who had had dreadful eczema since he was a baby was allergic to lanolin - and softening the skin with lanolin was what he was advised to do! So all the time he was trying to help he was sabotaging the attempt.
I love Margaret Martin, she is so calm and knowledgeable.
Good luck with smiling through gritted teesh. They say smiling even though you don’t feel like smiling becomes a habit ☀️
Your husband should never of been put through all those years of suffering. I found out about my fractures only by accident , a casual remark from a hospital doctor of "what are you taking for your compression fractures "
A caught a virus 19th December last year whilst at a cinema. 2 days later I was bedbound. Each time I coughed the pain in my back was excruciating. It took me 6 weeks to get out of bed and go to the doctor .
Even though you could see how much pain I was in with every movement , it was put down to a seized muscle due to being bedridden. I then had a Dexa scan and an ultra sound and more blood tests.
My haemoglobin was very low and I had to go to hospital where I had tests done....I had a blood transfusion and iron infusion and booked in for a colonoscopy and endoscopy, CT scan MRI
They found cysts on my liver and pancreas, a dvt in my right calf . A large hiatus hernia (which I knew about) and all the time on strong pain killers.
It was only because after the colonoscopy they were switching me from twice daily injections to tablets for the DVT that the doctor was closing their file on me , so to speak that his innocent remark blew me away.
I still have pain and cannot bend down or lift anything heavy, also the ache limits my walking if I do too much.........sorry it's a long reply but whilst writing to you I found it rather cathartic .
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