lolly64

Hi sheeniejay I had a hysterectomy day before I was 39 and I had one ovary removed, after two years I began getting menopause symptoms, was on HRT until late 50s in that time I had a dexa scan as my mum had fallen and broken her wrist, by then I had very slight osteopenia but I had been taken off HRT some years before I asked to go back on it they told me HRT protects the bones well known fact, alas in UK my doc refused to prescribe it again because of my age so I went around 6yrs with nothing until I asked for dexa found I now have osteoporosis and am taking alendronic acid I don't like it but no other options here really I wouldn't have prolia as its injected!!! Good luck x

Sheeniejay in reply to lolly64

So because you're, presumably, in your sixties, the UK doctor won't prescribe it? Oh that's awful!! I have TOTALLY ruled out Prolia - I've read TOO much about it. The risk is too high! It's good to hear that HRT is indeed believed to protect bones. How's the alendronic acid going? I hope you're doing okay.

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BadHare

Take a look at Save Our Bones website. There’s a lot of free information you might find useful. Also a bone health HU forum.

Sheeniejay in reply to BadHare

Thanks - yes, I've been reading and speaking a lot to people on the bone forum - and thank goodness I did. I live in NL and could find nothing as good as NOS site or this site. If I hadn't found this site, I think I would have stayed naieve. I would never have thought about asking for HRT for sure. I'll check the Save our Bones site.

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pattisue

If have taken hrt for years. Some doctors seem to think it’s a bad idea, and one doctor even wiped it off my prescription list causing terrible symptoms. My mum had osteoporosis, and th fact at 65 I only have osteopenia in one hip is down to the HRT over the years. I was first prescribed it by a private consultant, and I decided that if I ever had problems again , I would just pay to see a private consultant, and hopefully get better understanding. . Ps I had a hysterectomy , also Fallopian tubes, cervix and one ovary removed 4 years ago. Hope this helps.

Sheeniejay in reply to pattisue

Thank you so much!! Yes, that helps a lot.

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Seanine in reply to pattisue

Was diagnosed with osteoporosis. Then went on hrt. Had a dexa scan a couple of months ago. Told my bones are better than a woman in her thirties. That doctor however doesn't want me to continue hrt due to the bad press. My previous doctor had prescribed it and believed in it but she retired. I'm staying with on it. Called Evorel conti patches. Running round after my grandkids. WHO trials were badly flawed. My previous doctor said that in the future it will be found that we should all be on them. A woman on twitter in England said her doctor has a woman of 77 still on them. Says no reason to stop. That doctor is on the board of the British Menopause society.

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Sheeniejay in reply to Seanine

THANK YOU SO MUCH! I have an appointment with my bone specialist on Monday to discuss treatments. She knows already that I want HRT. I have amenorrhea but, I don't know if I am also perimenopausal. I asked my GP (I live in the Netherlands) and she said we could test to see if I'm going into menopause now (I'm 46), so, it seems it's possible to have amenorrhea and go into menopause.

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Sheeniejay in reply to Seanine

Hi. Just seen my bone specialist. She suggested the combined pill, instead of HRT, but I just read up on it and how it can WORSEN bone density! I want to go back to push for HRT. What treatment - brand, regime etc - are you taking? It will help to be able to give her specific details of one which has improved your DEXA scores. THANK YOU!!

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Seanine in reply to Sheeniejay

You are young so you'd be prescribed a different one to me. I'm on Evorel conti. Triptolene

would be suitable for you. I was prescribed that at about your age.

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Sheeniejay in reply to Seanine

THANK YOU!!!! I'll keep you posted.

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pattisue in reply to Seanine

I knew a woman in her 80’s who was on hrt.

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Kaarina in reply to pattisue

Had the medics forgotten to take her off HRT or was she still suffering hot flushes ....

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Bev53-SB

Hi there, I was diagnosed with OP when I was 65yrs ... I refused medication and decided to self manage with supplements, good diet and exercise ... I fended off medication for 8 yrs and more or less maintained my bone density with only small deviations in T scores, until I was a passenger in a car accident, I fractured my sternum and had two compressed vertebrae. I couldn’t exercise for ages, then got pneumonia and exercise was again out on hold. As a consequence when I had my most recent DEXA scan it showed bone loss in both my spine and hips and my hospital consultant said it was time to think about medication. I refused bisphosonates including Prolia but after much heart searching and research I opted for Raloxifene ... I had read a great deal about side effects and I was very apprehensive, however I am now in week 3 and so far so good, I have had no side effects whatsoever, it is early days yet but I am feeling optimistic.

Sheeniejay in reply to Bev53-SB

Thanks Bev53-SB I read up about raloxifene too. It's about number 3 on my option list - above biphosphonates & Prolia (Prolia is not an option for me - sounds too awful & risky). Good to hear that, so far, you've not experienced any awful side effects.

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Bev53-SB in reply to Sheeniejay

What are the options above Raloxifene for you? I am guessing HRT is one of them but at 73 my consultant didn’t think this was an option but you are much younger. Isn’t it just a mine field, I was offered Prolia because i had outright refused bisphosonates because of a difficult dental history, fears of ONJ and the fact I had a hiatus hernia ... but Prolia is still a bisphosonate with worse outcomes if it is withdrawn. I would have considered Strontium Ranelate but of course this is no longer available on the NHS. I found the NOS nurses very helpful when I was considering the pros and cons of each option.

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Sheeniejay in reply to Bev53-SB

Yes, I rang the NOS nurses too and have researched everything, read studies etc HRT is my first option, teriparatide is my second choice (from indeed, a potential side effects mine field) because it seems to have the least awful potential side effects. There's no public health service here in the Netherlands. I know it is reimbursed by health insurance BUT I don't know, until I talk to my specialist, if it is only approved if the patient has tried the first line treatments (biphosphonates & Prolia) and responded badly. On any treatment, I'd double check with my specific insurer that they would reimburse the cost under my current policy. You often have to opt for certain brands too. Talking to everyone on this forum has been invaluable, though.

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Bev53-SB in reply to Sheeniejay

Yes it does help being able to chat to others, good luck whatever you decide.

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Jessie1234

Sheeniejay, I discovered I had osteoporosis in my spine, -2.5 dexa result, at 53 years of age after breaking an ankle falling on black ice, which is not a fragility fall. Ten years down the line I have had no more breaks despite refusing bisphosonates after reading stories from the US online as there was so little information in the UK then. With a lot of trepidation I went the exercise route and eventually improved my diet taking supplements Vitamin D3, K2 and boron and eating a banana daily for potassium. I have been doing Pilates for 16 years with a very experienced instructor; I walk regularly with a weighted vest including hills, do aerobics and lots of dancing including barn and ceile dancing involving plenty of hopping and stamping. I also did weight training for a year with a personal trainer being very careful with the type of exercise. I think if I were to do it again I’d take HRT but years ago I was scared of it too. As I get older I’m open to taking drugs if fractures occur with age. I refuse to get dexa scans as a doctor said to me...if you do and your score is bad we have to offer them and she told me I was doing all the right things. Anyway with reading up I gather that often it’s people with osteopenia who have fractures. Current thought is that it’s not just the score that counts; the quality or testile strength of your bone counts too. I found The Canadian Osteoporosis Society very useful for advice and The Better Bones website and blog plus melioguide.com. I have the book by Margaret Martin “Exercise for Better Bones,” a very doable, safe progressive weight training programme you can do at home that has lots of online support and advise from the author, an experienced Physical Therapist. I found the book by Lara Pizzorno “Your Bones; How you can have Strong Bones for Life - Naturally” useful. And of course the NOS advise is invaluable too. I’ve only discovered recently that my osteoporosis may be due to haemochromatosis ie, iron overload. Now to sort that! Sorry this is such a long post but I’m just pointing out that there are alternatives, including a route you could take alongside HRT. Don’t panic ( I did!). You are not going to break a bone immediately, You have time to think it through and make informed decisions.

Sheeniejay in reply to Jessie1234

Thank you!!! I had a metatarsal stress fracture on my left foot (3rd bone) BUT I am a runner and had been training VERY hard for 2 events when it happened. Sadly, this has put my fracture risk from 1.6% to 3.6%. I know stress fractures are really common amongst runners - men get them too - but one specialist has made me obsessively terrified it will happen again very soon.It took a long time to heal but I refused a plaster and obviously, walking around, being active. Thank you for taking the time to write such an informed reply. It's also helpful because your diagnosis came only 7 years older than I am. I also read an article just this morning about how a particular probiotic has shown bone improvement in mice. They want to see if it has a positive effect in humans next.

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HeronNS in reply to Sheeniejay

Excuse me, but if I read your reply correctly your chance of NOT getting a fracture has gone from about 98% to about 96%? Or is my math completely wrong? When I was advised to take medication my fracture risk was 10% which meant likelihood of NOT fracturing was 90%.

Btw I've used only exercise and few supplements and good diet and no bone meds and improved t-score from -2 to -1.6.

healthunlocked.com/pmrgcauk...

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Sheeniejay in reply to HeronNS

Well, yes, that's a much better way of expressing it - thank you. Ironically, when I was able to drink milk (and took calcium on top), I kept declining. In 2016, I suddenly became severely intolerant of whey so no more dairy. Now I just use calcium supplements but there were some months, due to an unrelated illness, I could not take supplements. My recent DEXA scans show that my hips have improved slightly. I saw my new specialist this week. We discussed what I want and need. They know I will not, under any circumstances, take Prolia and that biphosphonates are something for the future - but as far into that space as possible - IF needed but not now. Literature, other specialists at the other hospital all agree - it is NOT what I should be given now and in my situation. So now I wait to see what the consultants, at this research hospital, will discuss and suggest. I do, at least, still feel as though I am being taken seriously and, at this research hospital, as you'd expect, there is a bone centre specifically set up to address bone health and conduct research into the area. It's good to hear that you've managed to make a difference and not resorted to drugs. If someone can show me that, maybe not HRT (my bloods show I am nowhere near peri-menopausal), but a contraceptive pill yields results as good as HRT, then I will try that. The specialist at the research hospital said, in any case, very likely that this would be a new approach and they would certainly monitor me closely and frequently. She said that my case was interesting and she's keen to discuss and agree some suggested treatments.

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HeronNS in reply to Sheeniejay

When I realized how old this post was I wondered whether you'd see my comments. It's really good you are being taken seriously - and possibly will end up being a case study in the literature, which will help other patients. The root cause of bone thinning really needs to be investigated especially when the obvious suspects don't seem to be in play. All the best!

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red-tree

sheeniejay I'm keen to know if you have started hrt which one and how you find it..side effects etc. I'm exactly the same age and situation as you. 46 no periods for 9yrs due to low body fat for few years and permanent low estrogen...had all menopause symptoms now settled told periods not coming back..my fsh levels are normal still though.dr pushing me to take either hrt or the pill. I have very mild osteo ,osteoporopenia . Really hate idea of either but don't want to be crippled. Hate idea of bloating or gaining weight .Love to hear your decision.

Sheeniejay in reply to red-tree

My specialist would not prescribe me HRT - she said the risks of thrombosis, breast cancer are potentially too high - all her colleagues agree that bisphosphates, etc are too aggressive and totally inappropriate for someone in my position - namely, not menopausal, amenorrhea due to low body fat for about 20 years, fsh levels normal etc She said she has no experience of someone in my situation and therefore does not want to prescribe something which could have awful consequences. HRT is only prescribed for those women who are post-menopause. The pill, where there's no real evidence, that she has found, that show it to be effective - Indeed, I only found one (albeit very small) clinical study which showed either is had zero effect or made osteop worse. To be honest, yes, I'm disappointed BUT at least she's honest, has asked other colleagues and is not pushing me onto the really severe drugs. The advice was to put on weight and see if my periods come back - I said that we have no idea that they even will come back and I'm not prepared to have nothing for 3 years, and then my next DEXA scan shows even more deterioration. SO, she's referred me to the academic hospital, to a specialist there because she hopes that another specialist might have more experience with someone like me - of course, I'm hoping that someone will have knowledge about HRT and people like me - HRT shows time after time to have huge positive, reversing effects on osteop.

I'm waiting for an appointment from the other specialist. If he/she also cannot help, then I will call my health insurance (in the Netherlands, it's not a public health service) to find out if I can go to specialists outside my area - if yes, I'll ask my doctor or the specialist to refer me to other experts until I find someone who has treated a patient in my situation. I do all the other stuff- calcium, vit K2 (just started that one a few weeks ago as it's hard to find a soya free one), vit D3 (on a prescribed strength from doctor which I take every 2 weeks - yes, it's strong!), impact exercise etc My DEXA results are worse than your ones - My hips are osteopenia (-2.1 - ostepenia range = -1.0 and -2.5, which improved from -2.2 which it was three yrs ago), my spine has declined from -3.3 to -3.6, so osteoporosis, though so I am desperate to get treatment. I was also offered the pill many years ago, when I lived in the UK. Do I regret not taking it? Only if the doctor had clear evidence that it worked. That would be my advice to anyone in our position - yes, take action again. I'll post this reply so that others can read it and maybe have experience.

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Sheeniejay in reply to red-tree

I forgot to ask - does your doctor have experience of treating people like us with the contraceptive pill or HRT - I mean effectiveness, results etc

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DeannaAlphi

Hi. HRT can have it's own effects. I was on it in my mid 30's and was medically retired due to it's side effects. It messed up my whole biochemistry. One size does not fit all and that's the way it seems to be prescribed in the uk anyway. Hormone therapy may a route to explore, if they will tailor it to you, not a ready made package which they dish out on a trial and error basis. Also if you do go down that route, research the different sources...chemical and more natural. Good luck with it. Dido xx

Sheeniejay in reply to DeannaAlphi

Thank you - my case is going to be discussed amongst the specialists at the research hospital. I saw the new specialist last week. Interestingly, though not to say it's great, the DEXA scan that they performed gave me a better result than the other hospital.

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