Was diagnosed osteoporosis in 2013 after my eldest brother diagnosed real bad was advised his siblings get tested I drew the next short straw so as to speak. My T score as of Dec 2018 is 3.8
I been on calcium 2 x daily since diagnosis but was allergic to the weekly tablets so not took any of those. About a year ago my annual bloods for drs showed deficiencies in vitamin D so was put on 800IU for a month then a maintenance dose of 400IU daily since
Saw rheumatologist for the first time 2 weeks ago seeing rheumatology nurse on 13th May was recommended Zoledronic Acid infusion annually for 3 years
My grandmother( dads mum) had severe osteoporosis she had curvature of the spine. My eldest brother has it bad my dads sister had it bad too. I had hysterectomy at age 36 and been on HRT for 5/6 years following I’m also on long term anti epileptic medication of 19 years!!
In horrendous spinal pain and painkillers not helping at all. To my knowledge no spinal fractures but having lost 2” of height in 6 years makes me wonder??
I am looking for support on this and as I’m on another forum on this site I searched and found you too. I am now a member of ROS do I’m so pleased to have found support where I can access it
Looking forward to being a part of this community
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Babyr1996
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Have you had your Vitamin D retested and do you have the actual result? Because, as far as I am aware, a Vitamin D deficiency should be treated with much higher doses. A Loading Dose of (for example) 300,000 IU given in split doses of 50,000 IU a week for 6 weeks (depending upon which treatment regime is decided on). Then , daily maintenance dose of 800 IU (or as much as 2000 IU in some cases) is prescribed.
Look up NICE guidlines for treatment of Vitamin D deficiency.
ps
I've lost height, not been tested for Osteoporosis but have very bad arthritis in C- spine with total loss of one joint space and partial loss of another. (C5/C6 and C6/C7).
I am assuming you live in UK, so it's good you have found this - because we need to stick up for ourselves. Reading all the posts, I have found that these are mostly written from UK, a few from US, a tiny amount from Canada, but never any from Europe. I am assuming this is because Osteoporosis is much better handled there. When I was told in UK that there was nothing that could be done, I went over to Italy and found the State health system organised weight-bearing exercise classes, so came back and looked for similar classes here. Now my GP is being more active about getting me to see Rheumatologist. But we have to demand this - so good luck.
Hi yes I live in Staffordshire Uk. I’m hoping to get the help I need now. And it’s helpful getting people’s advice and suggestions I’m slowly making a list for when I see dr on 1st May. Thank you for replying xx
Has anyone explained why your family has suffered so much - and seemingly all at a reasonably young age - from osteoporosis? It suggests it's genetic but I had no idea that osteoporosis could be a genetic condition that has early onset. Or is it an age thing? You don't say how old your brother is. I'm surprised too that the HRT did not improve things although, if you don't know what your T scores were when you went on the HRT, it's hard to know. Has this been discussed? Take vitamin K2 also - essentially it helps to divert calcium from depositing in arteries etc and gets it to the bones. I hope you start to feel better soon.
No I’ve had no explanation at all my brother was 56 when he was diagnosed! I didn’t know t score at time of hrt i was on hrt 1999-2006 then it was stopped! I was diagnosed osteoporosis in 2013.
Well, obviously you can't go back and correct what has already happened but I would, in your position, seek more answers. I think an endocrinologist with expertise in bone conditions. Endocrinologists specialize in glands and the hormones they make. They deal with metabolism, or all the biochemical processes that make your body work, including how your body changes food into energy and how it grows and may have better insight into the hormonal influences on your OP. I have amenorrhea - which is why I have OP in my spine osteopenia in my hips. I now have (as of last week) a team of endocrinologists who have discussed my case (aged 47, no periods for 20 years - cause basically too low body fat/underweight, hormones fine, not menopausal) and we are now in the process of agreeing a treatment plan. Have you discussed if it's possible to go back on to HRT? Make sure they go through the risks and push them to consult the literature of clinical trials and other consultants in the field if you feel that you want to explore other options. I live in the Netherlands but 5 years ago I lived in UK and was there for 42 years. Something my specialist said yesterday is that they look at the whole person always - circumstances, daily activities, wishes of the patient etc - AND the condition of the bones etc It may be, of course, that your ARE getting the best treatment possible for your circumstances - I'm not a doctor - my point is only that there seems to be a lot that has not been explained to you re family history, and possibly why hrt was stopped and not restarted in 2013. It may not change the course of treatment you now going to embark upon, BUT it might put that into a context which helps you understand your condition more and why you have this route of treatment. I hope you find the answers.
My understanding is that there is a genetic susceptibility i.e. higher risk factor. Currently there seems to be limited research into linking it to a particular gene and this is an ongoing field of study.
My mother had osteoporosis and I do to. I had ten years of HRT after a hysterectomy. This year will be my third year of Zolendronic Acid infusion and then a further scan to see if it has had any effect. There are different calcium tablets with vitamin D which you can take. I find some suit me better than others mainly because of the incipients. That is the additional ingredients they use to bind the medicine such as lactose or wheat or corn flour.
As far as I can make out they do not know all the different types of osteoporosis and there is a great need for ongoing research. My mother had osteoporosis for years and arthritis and spondylitis and tried to go for a walk every day to strenghten her bones and lived independently - in sheltered accomodation - until she died at the age of 89 years. She always gave me hope to do all you can to keep on, to try to stay positive and help yourself as far as you are able to.
All the best as you find out what works for you at this time in your life Babyr. I attended a Pain Management Group two years ago and found it really helpful. It is about finding ways to manage chronic pain daily which isn't easy.
Welcome to the community Baby. I am so sorry to hear what you’ve been through and are going through now. Hysterectomy at such a young age must have been so difficult to cope with. I was devastated when diagnosed and it’s hard to dispel the fear. Think it’s difficult to tell how much pain is actually down to osteoporosis. I know that before I was diagnosed I used to feel more tired and achy but didn’t have any real pain until I fractured my spine. Could you not request an X-ray or MRI to determine whether you have fractures? Surely with your history and diagnosis that should be offered to you? I have 3 fractures from trauma and road traffic accidents (I’m an accident magnet 🙄). I’ve just managed to self refer for physio which is really important when you have spinal fractures or any come to that. No physio was offered by the hospital when I was discharged this time so I did research for myself. Where do you live? I know there is a post code lottery but you may be able to access a good physio if you are found to have fractures.
It feels lonely and frightening but the kindness and support on this site helps. Sorry I can’t be more helpful, I’m much less knowledgable than many on here but I really wish you all the best!
Hi Debs4 thank you for taking time to welcome me!! I’m seeing GP 1st May so am asking for X-ray can’t have MRI due to having a pacemaker!! Yes more health issues. You say your an accident magnet I think I’m an acute illness magnet!! Haha!! Sorry got to Keto my sense of humour!!
I wasn’t impressed with rheumatologist at all I was ushered in and out in less than 5 mins I didn’t get chance to ask questions nothing he took my allergies what meds I’m on and said we giving you an infusion didn’t explain what it was nothing but now got appointment to see rheumatology nurse in 13th May so I’m going armed with questions to her too!! I’m hoping to get physio and hydrotherapy treatment if possible. But the nurse on the Helpline was very helpful at the royal osteoporosis society
Hi sorry to hear you have osteoporosis. I had a hystorectomy at 40 and was on HRT until I discovered I had breast cancer and the HRT was stopped. I am now 71 and have 3 fractures in my spine and have lost 2" from my height. I have no idea how I did the fractures but I have been in severe pain since, I cannot take any of the medication as I get too many side effects, I also cannot tolerate pain killers so I take paracetamol regularly. I would ask for an x ray to check for fractures, what is ROS? I wasn,t aware that osteoporosis could give pain unless you had fractures of some kind?
Hi Angie26 nice to meet you on here. I’m asking for X-ray when at drs on 1st May I’ve booked a double appointment. I assume I have fractures due to the pain but I don’t know for sure.
ah of course, are they helpful? best of luck with the X Ray as you are in such pain I would have thought an X ray was normal procedure!! let me know how you get on X
You have come to right place - this forum is brilliant at providing sensible advice. It is good you are thinking about hydrotherapy - every osteoporosis unit I went to in Europe had this - and it was well-used. If you want facts to back up your application (some medics are very sceptical in UK) look on this site for bits : aftercancers.com/hydrothera...
Definitely those doses of Vitamin D3 are not high enough to deal with a deficiency. They are barely enough as a maintenance dose. Or were the doses in the thousands, not the hundreds as you wrote?
I will raise this with my Dr I go not know what my levels were he just said I have Vitamin D deficiency and these are the doses yes but I don’t feel any better for it tbh!! Maybe not as bad as a deficiency but that’s the terminology used. Does make one think. It’s on my list !!! Thank you
If you can find your way through to the section for health care professionals (and health conscious individuals) the recommendation for adult maintenance dose is 1000 IU daily. This amount does not even address deficiency where 5000 is a recommendation, with a maximum daily dose of 10,000, if one does not get sunshine.
They also describe symptoms of toxicity when people have too much Vitamin D.
Hello Babyr and welcome just catching up on your messages - When you get your Xray try and get the full spine and not just front /back but 'Side views' as well. My first spinal Xray was just front/back and only the lower back, which didn't really show very much. I had a second spinal Xray 2.5 months latter as I continued to be in so much pain only in the 'side views' did the damage show.
Hope you are able to get something sorted out on the 1st May - Good Luck.
Hi posy-white thank you for that tip I’ve made a note of that on my list (which is getting a big long now) but all the help and ideas I get now saves time in the end and quicker (I hope) treatment. Really appreciate it thank you so very very much
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