Information from your doctor - Bone Health and O...

Bone Health and Osteoporosis UK

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Information from your doctor

angie26 profile image
23 Replies

I have Osteoporosis and 3 fractured vertibrae with chronic pain. My question is, I had a full hysterectomy when I was 40 and was on HRT for 15 years. Unfortunately I had breast cancer and was taken off the HRT. No one tells you that your bones will suffer as a result, I also need cortisone inhalors and occasionally prednisone, again no one tells you the consequences of steroids! following my fractures I was given AA and suffered terrible reflux, the doctor said I should never have had AA as I have a hiatus hernia!! I was then prescribed risedronate, I could hardly lift myself off a chair or walk properly!! I really don't trust these drugs and now refuse to take them, if a doctor wants to prescribe they should at least explain that they can cause serious side effects. I once told a doctor that I wouldn't take the medication prescribed after reading the leaflet and he said - oh you should never read those they are their just to cover the PC co's from being sued. I have now read so much about Osteoporosis treatments and wouldn't touch them with a bargepole, I'm now like a lot of people relying on diet and necessary supplements and excercise and maybe just a touch of something natural like CBD if I can find the right one!!

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23 Replies
lolly64 profile image
lolly64

Hi Angie 26 I really feel for you I too had hysterectomy at 39 and went straight on to HRT and like you nobody ever mentioned bone thinning when they took me off HRT at all only took me off of it because of the bad press thankfully I didn't have Breast cancer but did have a scare, of course at 50 you don't think about the ageing process!! Strange thing is I've been on AA for a year now and I was going to post is there any GOOD stories about taking any treatment as I am worrying about hearing about fractures also heard it makes the bones too rigid so they crack. Looks like I need to re think my whole strategy wishing you good luck for the future take care

angie26 profile image
angie26 in reply tololly64

Thanks lolly64, you don't say why you are on AA do you have Osteoporosis? I am reading lots about the drugs they give you and some people they work for, I'm one of these people who can't tolerate drugs so may be different for me, but from what I can gather it's when you come off some of these drugs that problems arise, there are better informed people on this site who I am sure would put your mind at rest X

trishbindefeld profile image
trishbindefeld in reply tololly64

I was on sodium risesdronate for two years. Came off at Christmas. I was always worried about it and had some side effects including a very strange skin problem a bit like psoriasis which has stopped spreading but not gone away. I felt I owed it to my body to do something to help and am now on a vitamin d, magnesium, vitamin k2 and Boron regime with back up from the Facebook group “vitaminD deficiency (U.K.) Open Discussion”. Hopefully the calcium I consume is now finding its way into my bones and keeping it there. I have also stopped taking the prescribed calcium as the vit d increases the absorb ability of the calcium by several hundred %.

I think we need to remember that the dexa scan compares your bones with those of a 30 year old ( I understand) so of course our bones will be less dense. Twas ever thus! It’s just that with modern technology we now know about it!!! Our ancestors just got on with life!!!!

angie26 profile image
angie26 in reply totrishbindefeld

Never thought of it like that but you are right!

lolly64 profile image
lolly64

Hi Angie I'm sorry yes I have osteoporosis not discovered until routine blood test showed me to be very low in calcium even then I still had to ask for a dexa scan where it was discovered I had osteoporosis left hip and spine I did fall down stairs in 2015 backwards maybe I was lucky but was OK then I did have reflux and pain first few weeks on taking AA but since then been ok BUT I still feel like I shouldn't be taking them I'm between the devil and the deep blue sea I care for my son who has learning disabilities so to be out of action because I didn't take the medication would be hard but when I hear of people who've taken meds and had fractures etc whilst on medication I then don't know what to do awkward situation for all of us ladies I think!!! Thank you for your reply wishing you good luck with your own natural way of dealing with this problem

angie26 profile image
angie26 in reply tololly64

What really irks me is that having taken us off HRT don't you think there should be some way of monitoring us for the disease? or at least making us aware that we need to organise something for ourselves for the future! X

Congirl profile image
Congirl

Hi angie26 diagnosed last year after breaking wrist. I too had an hysterectomy at 42 and have an underactive thyroid. Originally on HRT after operation and then taken off. I feel the medical profession have let us down regarding information about bone loss. I am not taking the bone meds have refused but have been allowed to go back on HRT, I am 61. Hopefully I won't get any problems with it. I also take D3, K2, Boron and magnesium. It is 2 years until I have another scan. I feel that I have been walking on eggshells since the diagnosis. I was also told I may have primary hyperparathyroidism so am currently having this checked out.

angie26 profile image
angie26 in reply toCongirl

You are so right we have been let down so badly by the medical profession, why isn't there education on the subject particularly people coming off HRT and all the drugs that cause thinning bones, they wait until fractures occur and then if you can't tolerate the drugs or pain killers I'm told there is nothing else, very sad isn't it X ps read as much as you can about the drugs for Osteoporosis before even thinking about them!!

sweetsusie profile image
sweetsusie in reply toCongirl

Hi, rosw: I, too, have a doctor who is allowing me to be on HRT and I'm 70!!!! I won't take those awful bone meds...no way....

SpaghettiIsGood profile image
SpaghettiIsGood in reply toCongirl

Yes, I'm finding, too, that doctors think it not necessary to educate patients on long term side effects. What happened to 'do no harm'? Maybe they assume we have time for research.

Walkingdogs profile image
Walkingdogs

If you’re looking for cbd, I buy mine from Simply cbd. They are a great company and you can get lots of advice from them and the Simply group. Their profits go to an animal rescue, and they’re not expensive. I take the green oil as it has CBDA which is good for pain.

angie26 profile image
angie26 in reply toWalkingdogs

Hi thanks for that, at the moment I'm trying a cbd oil 10% CBD full spectrum which the Company advised when I asked their advice, I have been using it now for 2 weeks so unsure of how it's working for my me yet. As you are probably aware it's a CBD minefield out there and it's always good to hear how others are getting on with their particular brand. X

Walkingdogs profile image
Walkingdogs in reply toangie26

Did they advise to start on a very low dose and build it up weekly as seemingly this is what you’re supposed to do. Do you take it in capsule form or drops under your tongue. The latter is supposed to get it into the bloodstream quicker.

Debs4 profile image
Debs4 in reply toWalkingdogs

Hi Walkingdogs

Have you noticed this really helping with your pain? And if so would you mind telling me how the smallest bottle would last please?

Walkingdogs profile image
Walkingdogs in reply toDebs4

Debs, I take the green oil. The smallest bottle 10ml is £6 and the 30ml £18. When you start, you only take one drop 3 times a day under your tongue leaving a 2 hour gap between any meds you may be taking. If you join the group there’s lots of info there. Just to prepare you, It’s a very bitter taste.

trishbindefeld profile image
trishbindefeld in reply toWalkingdogs

Healthspan do a peppermint flavoured one. Perfectly palatable. And they do capsules. You do need to be careful with suppliers. It’s an expensive product and there’s a lot of poor quality stuff out there.

Walkingdogs profile image
Walkingdogs in reply totrishbindefeld

Simply cbd also do an aqua that can be put into a drink, and capsules as well. I buy from them as their profits go to an animal rescue. They give a lot of information as well, and aren’t expensive.

Walkingdogs profile image
Walkingdogs in reply toDebs4

I forgot to say. There’s 200 drops in the 10ml bottle. I find it helps a bit with the pain and it helps to relax you. I’ve worked up to 7 drops 3 times daily. I’ve been taking it from September 2018. I think it’s trial and error. If one kind of oil doesn’t suit after you’ve tried it and built up the drops you can try another. There’s a few you can buy.

angie26 profile image
angie26 in reply toWalkingdogs

Thank you X

angie26 profile image
angie26

I'm taking drops under my tongue and leaving for a couple of minutes before swallowing! stared with one drop and now on 2 drops 2-3 times daily are you finding it good for your pain and is it due to back pain?

sweetsusie profile image
sweetsusie

I feel you have made the right decision regarding this awful bone meds! Good for you!

angie26 profile image
angie26

Thank you, I don't think my doctor would agree, I want to say would you give this to your wife or daughter, I be I know the answer to that!! X

SpaghettiIsGood profile image
SpaghettiIsGood in reply toangie26

Indeed, like congress, they have their own healthcare and other, better rules of living. And lawyers represent you, but don't have to really live with the outcome.

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