theros.org.uk/
I can recommend the Royal Osteoporosis Society. You can talk to one of their nurses. Found them very supportive myself,
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I have osteoporosis and as well as bisphosphonates I was prescribed calcium and vitamin D supplements.
I'm reading more and more that there is a risk of the calcium affecting arteries and decided to see if I can get enough in diet alone.
www.ncbi.nlm.nih.gov/pmc/articles/PMC7276095/
calcium supplementation, but not dietary calcium, positively correlates with abdominal aorta calcification in postmenopausal women
I had a discussion with a specialist nurse at the Royal Osteoporosis Society and she said I would need 1.5g of calcium a day (which is quite a lot), plus you need vitamin D to help absorption.
I am going to try and really boost the calcium in my diet but could do with some tips.
I don't like tofu which is a shame as it's very rich in calcium. Not keen on cheese but can tolerate a little. I eat Greek yoghurt every day and use skimmed milk which is slightly higher in calcium than semi.
theros.org.uk/
I can recommend the Royal Osteoporosis Society. You can talk to one of their nurses. Found them very supportive myself,
Shwez
Hi you need to take K2 along with D3 . The K2 takes the calcium and puts it in your bones
That’s very true. Research suggest it redirects calcium to bones rather than depositing it eg arteries. It’s no as simple as just adding calcium and D3 to the diet. Collagen is an important constituent of bone too.
When I broke my wrist, several years after I'd started treatment I remember a nurse telling me they were introducing a programme which would arrange for all women over a certain age who broke a bone to have a scan, bet that's gone now!!!
In my case I had absolutely no symptoms and ticked none of the vulnerability boxes, but I am part of the UK Biobank sample and it was found when I volunteered for one of their research projects which included a DEXA scan. I must have had osteoporosis for at least 15 years, may be longer, as the fall that probably unknowingly fractured my vertibrae was 13 years ago.
Sorry, RRH I re-realised yours was the OP and you were asking about increasing your calcium. here is a link to a website giving a list of the calcium values of various foods www.osteoporosis.foundation/patients/prevention/calcium-content-of-common-foods. Tinned fish like sardines and pilchards are high in calcium, if you eat the bones, also any member of the cabbage family, oranges and whubarb, to name but a selection.
I do wonder if the service is deteriorating like much of the NHS? I had my first scan 25 years ago. I had no symptoms and no broken bones. I'd just gone through the menopause, knew my mum had it and there was a family history of it. I simply asked them to do one.
RRH You can do a lot for yourself, just by taking a vitamin D supplement (minimum 1000iu) and upping your calcium intake, ideally more milk or cheese each day.
My experience has been very similar to yours MOnica.
I asked repeatedly for a dexa scan because I knew I was high risk and yet they put me on steroids.
My Rheumatologist had been reluctant to give me a dexa scan but eventually agreed. When I saw him for the results he had forgotten and his parting words were oh yes you have osteoporosis. I'll prescribe something. That was the full extent of it. I've had to find out more for myself.
TBH I have a long list of health conditions and osteoporosis has never seemed a priority.
I'm in the NE but you have to be careful. One excellent NHS trust, but neighbouring ones are not as efficient or as caring. I was talking to someone who has numerous health problems and is pregnant, she recently moved from one trust area to the good one. The standard of the joined up care she is receiving has astounded her.
Where do you live Gloryanny We are planning to relocate!! Currently we live near Oxford and I was sent to the orthopaedic hospital there and, as you have read above, my contact with them has been minimal and help, advice and even an explanation of my problem near to non existent.
Fortunately for me a career as a researcher leaves me well able to find all the information I require, but I am the exception, not the rule, and. as osteoporosis tend to be a disease of elderly women, my local hospitalshould be making much more effort.
M0nica
I wonder how people who are too ill, too old or too unfamilar with modern technology to actively find out what they can do to manage their osteoporosis for themselves do.
Presumably resign themselves to constant bone fractures until they are so disabled that they have to go into a care home.
Perhaps it depends where you live. My osteoporosis has always been well managed. I was given appointments with a specialist nurse after diagnosis to discuss diet and exercise, and given leaflets on both. My drug use was monitored and a holiday advised and I have been called for scans regularly since.
My mother received similar treatment and in her late 80s was given six monthly injections as her drug taking was not reliable. She recovered from a femur fracture through walking and exercising and was operated on for a face fracture. She was still mobile when she had her last fall at 94.
Weight lifting is excellent for strengthening bones as the muscles pull the bone and it learns to strengthen itself
Vitamin K is essential to keep calcium in bones and keep it out of soft tissues like arteries, and kidneys (no kidney stones).
I take 3000 IU of vitamin D with 75ug vitamin K everyday.
The one I take is a little spray bottle called Better You- red label. The recommended dose is three sprays per day.
Marydoll, It is something I feel very strongly about. My daughter nearly died during the COVID shut downs, because her GP forgot to order a test, that one look at her would have made urgent and then refused to see her until scans he had ordered took place.
She saved her own life by ringing the health authority everyday asking about her scans until they got fed up with her and found a location for her to have them.
When the relevant test was done, it was panic stations with her being put on huge doses of the appropriate medication,.
I told this story to a nurse I was seeing at our local hospital. She was appalled and said, even during COVID she should have been blued and twoed to hospital for emergency treatment. The medication route, which thankfully worked, was the surgeries way of covering up their mistakes and they were lucky she didn't die. She was described as being 'critically' ill. in other words, recovery not guaranteed.
I wonder how people who are too ill, too old or too unfamilar with modern technology to actively find out what they can do to manage their osteoporosis for themselves do.
Monica, your statement could apply to any condition. DH and I had this conversation last night after my emergency GP visit.
My DH said he was relieved that I was so knowledgeable about my many conditions and wondered how those less well informed and non IT literate coped or survived.
I had to make suggestions about what medication the trainee GP could not prescribe, due to contraindications and remind her my kidney function needed checked. I know this because I have to keep up to date to maintain some quality of life and do so online.
It is an unfair and discriminatory world indeed.
I wonder how people who are too ill, too old or too unfamilar with modern technology to actively find out what they can do to manage their osteoporosis for themselves do.
Presumably resign themselves to constant bone fractures until they are so disabled that they have to go into a care home.
Monica I can only agree with you but for some reason with Osteoporosis it doesn't seem to work that way, all the running has to be done by you. I do wonder if its a bit like the sympathy people get when they have a broken bone all plastered up and when you have something nobody can see. I have also done my own research and having had lockdown etc have had a DEXA scan recently after 3 years instead of two but I had to ask for one. No follow up whatsoever. I take calcium and Vitamin D but apparently won't be going back on the Alendronic Acid at present. I have made a note in the diary to sort that out myself.
Chats with a nutritionist won't tell you much you probably don't know and anyway the food advice changes with the wind but if you want a private consultation make sure they are properly registered etc.
It is a difficult thing to deal with and yes it is one that you are left on your own with as a GP said to me, we won't do anything unless you break another bone!!!
growstuff of course medical advice should be specific to the patient, the advice to a frail inactive person who has suffered several fractures and has osteoporosis should be different to that given to a fit, active, otherwise entirely healthy person with te same disease.
I did say that I thought the ROS site was very good. It is. Its tone just doesn't suit me and it is too bitty, but I made it clear that was a comment on me, not the site. I am getting information from more impersonal medical advice sites.
But as I said. I think every patient with a problem serious enough for them to be referred to a consultant or hospital department should expect to be seen at least once by a doctor or specialised nurse, who can speak to them direct, visually assess them and talk through any queries about medication, treatment or self care. They should also, in most cases, where there is a continuing condition, be seen annually by the GP, practice nurse, or similar medical worker to check for any problems, developments that might need a re-referral to a specialist or a change in medication.
In them, all I was told was that I had osteoporosis and they were putting me on medication for life, thank you and good bye, you will not be hearing from us again
Either the hospital or the GP should check you, probably annually, to make sure the medication is working properly.
DH was put on medication for a different problem six months ago; the medication has not had the desired effect but trying to get a telephone appointment to discuss this with the GP who prescribed this initially is nigh on impossible.
He managed to make an appointment with a different GP in three weeks' time.
The letter ending said it all really. There's nothing they can do and you don't need anything else.
You haven't been given minimal advice. You've been given good advice! There isn't anything else. Your risk factor will increase as you age - and there's absolutely nothing anybody can do about that.
PS. The ROS site has excellent, factual information. I don't know why you think it's touchy, feely. It sounds as though yo think medical treatment and advice should be tailor made.
Did the hospital actually do a DEXA scan? If they did, they would have assessed you for frailty (physical and mental) at the time.
I'm sure you know how to use Google. The ROS website isn't difficult to find.
So you have had your scores! What else do you want?
You're already receiving all the treatment which is recommended and available. There's nothing else any doctor or nurse can do.
GPs just don't have the time to hold their patients' hands and go through with them information they've already been given.
If you have money to waste now, you could try getting a private consultation and being told what you already know and being given the drug you're already being given.
Marydoll, I have lost all confidence in my GP following another associated problem I have. With this I have been reduced to referring myself to a private consultant to get the problem properly assessed.
To be fair to my GP we are in an area where thousands of new houses are being built every year. The surgery has just got consent to double the number of consulting rooms to meet the growing demand, our GPs are absolutely overwhelmed and I have no idea where they are going to get the new GPs necessary to meet this increasing load.
growstuff I have received letters from the hospital. They do not contain any of the data included in your letter - and that is the whole point. All I have received is one letter stating I am minus one number on one joint and a different number on another, no explanation, and recommendng I be put on a specific drug (not Alendronic Aci). Nothng happened,
I waited 4 months then contacted my GP who knew nothing about it and said that that specific drug can only be administered by the hospital.
I contacted the hospital and was given another telephone appointment three months further on, when after a brief chat I was put on Alendronic Acid and referred to the ROS site. I have been told to make sure I consume a certain dose of Vit D every day and have a certain level of calcium, but no information on how I can do it, whether I might have any problems, Just referring me to the ROS site is not sufficient unless they know I know how to do so and am capable of dealing with information it contains. The letter ends I have not arranged any further follow-up but wish you all the best. In other words we have done all we are going to do, you are on your own now.
The hospital does not know whether I am a thin and frail old lady, struggling to manage and with carers or someone still generally healthy, who keeps fit and is more than capable of finding their way round a computer. So they have no way of knowing whether I am capable of dealing with the minimal advice I have been given or not andwhether I am in a position to know how to find any other help and advice I might need. It is fine to say that I am able enough and knowledgeable enough to find out all I need, this hospital is dealing with lots of people who get the minimal help and advice I have received and who are not capable of following it up.
I might add that while, objectively, I think the ROS site is very good, personally I find it way to much touchy feely, walking in your shoes, for me. I find it very off putting
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