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[minuette]

I'm 54 and have been on Livial for approximately 4 years - on my last visit to my GP he said he wanted me to come off it in another year, but after much thinking about it I decided I wanted to come off it now, as I'll be starting a masters in September and didn't want to deal with coming off HRT during my studies. 

He said the best way for me to come off it was just to stop, no slow withdrawal/lessening of the tablets and for the first 3 weeks I was fine.  Then the hot flushes started to come back, even worse than before I started on HRT.  Then the palpitations started to come back and in the past week so have the anxiety and tears. 

I'm not questioning whether a quick withdrawal was best or not, as I've already done it, but do these symptoms ever go?  I've started taking sage and black cohash so I'm thinking of waiting to see if these start to kick in. 

I'm thinking that the risk of taking Livial for the next few years is better than having hot flushes/anxiety/palpitations.

So my question to those who have come off HRT is.....is this something I should just work through or shall I go back on the HRT for another couple of years?  I know everyone is different but it would be great to know of others experiences.

[CLKD]

If it ain't broke why mend it ........... now that you know the symptoms are still present, maybe go back on it?  Was there really any reason not to continue with it?

[Dancinggirl]

Nobody can tell you how long the meno symptoms will last - we are all different and there are a few women who find the meno symptoms never actually fully subside. Herbs and remedies won't do anything. If you are a starting a Masters degree you need to have your brain functioning OK - lack of sleep due to night sweats does awful things to then brain.
I believe Tibolone has very few risk factors and in fact the risks of any HRT only really kicks in once we get to our 60s.  GPs do tend to air on the cautious side but if you tell him you fully understand that there might be small risks with using any form of HRT, you need to be able to function and have a reasonable quality of life, he will hopefully understand.  60 is the age to review everything.  If he refuses to continue prescribing then show him the new NICE guidelines and ask for a referral to a gynea or menopause clinic for specialist advice. I would stick with Tibolone until 60 and then review. DG x

[Mary G]

minuette, I'm sorry to hear about your problems but your post made my blood boil because it is completely unnecessary for you to suffer in this way.  Unless you have a very, very serious illness that prevents you from continuing with HRT (I assume you do not) then why on earth would you stop taking it?  You were obviously very happy with Tibolone so there is no reason why your doctor should suddenly decide on some whim that he will no longer prescribe it for you - for what purpose, did he give you a good reason?  Does he know that the HRT prescribing guidelines have changed and there is no longer any time or age limit on taking HRT?  Is he working with out of date information?  What risks are you referring to?  Apparently Tibolone carries the same breast cancer risk as oestrogen only HRT which is virtually none, it is only HRT that contains synthetic progesterone that increases breast cancer risk very slightly.  As far as I know, HRT is only more risky in your 60s if you suddenly introduce it 10 years post menopause and have never taken it before - as in the MWS. 

Despite the changes to the guidelines, it seems that many women are still being very short changed and not given the right menopause/HRT treatment.  I find it staggering that women struggle on for years with horrendous, embarrassing, life ruining symptoms and their doctors do nothing and tell them 'it's a natural process'.  Lots of things in life are a natural process but you don't necessarily want to go there.  The only way to treat oestrogen deficiency is to replace it with oestrogen, it's not going to go away on its own and the symptoms can drag on for many years. 

The menopause and HRT needs a whole new approach and a good place to start would be to very publically consign the two deeply flawed and now discredited HRT studies to the history books forever.  The benefits of taking HRT are immeasureable and make a huge different to your long term health in terms of cognitive function, heart function, blood pressure, bone density, the list is endless.  The benefits of HRT far outweigh the risks. 

Going forward, you can do several things, tell him you want to take Tibolone indefinitely and get him to prescribe it or find a private doctor who will prescribe it for you.  I know someone who manages to get a private prescription for Tibolone in the UK but she buys it over the counter and without a prescription in Spain because it is cheaper. 

In years to come, this type of appalling menopause treatment will be cited in medical books instructing doctors how not to do things. 

I hope you get back to how you were as quickly as possible.   

[Hurdity]

Heavens above - I had only just started on HRT at your age and still on it in my 60's ( transdermal = patch HRT). A friend of mine took Livial into her 60's and then doc said she should stop - fair enough if you have other risks - but certainly not at your age.

Sounds like your doc is of the old fashioned view that HRT should be taken at the lowest dose for the least possible time!

Just to clarify re the risks - there is a lot of sometimes conflicting information about these and work still to be done - but the general view from gynaecologists is that there are risks (but this could be specific to a particular type of HRT) in taking HRT for longer than 5 years but that up until age 60 if you have no other risk factors then the benefits exceed the risks. Between the ages of 60 and 70 the benefits and risks are about equal, and over 70 the risks may outweigh the benefits especially if you have other risk factors.

This is very simplified view but is the general rule of thumb used by up to date gynaecologists. The information is here:
http://www.menopausematters.co.uk/balance.php

There is information about risks and benefits here:
http://www.menopausematters.co.uk/risks.php
http://www.menopausematters.co.uk/benefit.php

Provided you keep well within alcohol limits are a healthy BMI - and not overweight, don't smoke and eat a healthy diet with plenty of exercise - there is no reason why you should be more at risk of stroke for example.

Please go back to your GP and request to continue - if you were happy with this product - and especially as you are doing a Masters! You want your body and brain to be in the best possible shape!

Hurdity x

[Annie0710]

I've been on hrt since 32 (18 years) and when I moved counties at 36 my new surgery called me in saying I've been on it too long and have to stop.  I had no knowledge of menopause or hrt just that my original gp was my saviour putting me on it and so I refused saying I will deal with the consequences .  When I hit 40 they tried again stopping it and once again I refused, I thought they won't give a damn if I get those night sweats back and the other symptoms so once again I refused.  When I was 45 I saw a gynae who said as long as I'm healthy I can stay on hrt for life

[minuette]

If it ain't broke why mend it ........... now that you know the symptoms are still present, maybe go back on it?  Was there really any reason not to continue with it?

Yes you're right.   He said he'd prefer it if I wasn't on it for longer than 5 years, but I'm thinking that the benefits outweigh the risks. 

[minuette]

Nobody can tell you how long the meno symptoms will last - we are all different and there are a few women who find the meno symptoms never actually fully subside. Herbs and remedies won't do anything. If you are a starting a Masters degree you need to have your brain functioning OK - lack of sleep due to night sweats does awful things to then brain.
I believe Tibolone has very few risk factors and in fact the risks of any HRT only really kicks in once we get to our 60s.  GPs do tend to air on the cautious side but if you tell him you fully understand that there might be small risks with using any form of HRT, you need to be able to function and have a reasonable quality of life, he will hopefully understand.  60 is the age to review everything.  If he refuses to continue prescribing then show him the new NICE guidelines and ask for a referral to a gynea or menopause clinic for specialist advice. I would stick with Tibolone until 60 and then review. DG x

that's good advice, thank you, yes I'm thinking that 60 would be a good enough age to stop....which is still a few years away for me and I don't want to carry on with the flushes etc for much longer!!

[minuette]

minuette, I'm sorry to hear about your problems but your post made my blood boil because it is completely unnecessary for you to suffer in this way.  Unless you have a very, very serious illness that prevents you from continuing with HRT (I assume you do not) then why on earth would you stop taking it?  You were obviously very happy with Tibolone so there is no reason why your doctor should suddenly decide on some whim that he will no longer prescribe it for you - for what purpose, did he give you a good reason?  Does he know that the HRT prescribing guidelines have changed and there is no longer any time or age limit on taking HRT?  Is he working with out of date information?  What risks are you referring to?  Apparently Tibolone carries the same breast cancer risk as oestrogen only HRT which is virtually none, it is only HRT that contains synthetic progesterone that increases breast cancer risk very slightly.  As far as I know, HRT is only more risky in your 60s if you suddenly introduce it 10 years post menopause and have never taken it before - as in the MWS. 

Despite the changes to the guidelines, it seems that many women are still being very short changed and not given the right menopause/HRT treatment.  I find it staggering that women struggle on for years with horrendous, embarrassing, life ruining symptoms and their doctors do nothing and tell them 'it's a natural process'.  Lots of things in life are a natural process but you don't necessarily want to go there.  The only way to treat oestrogen deficiency is to replace it with oestrogen, it's not going to go away on its own and the symptoms can drag on for many years. 

The menopause and HRT needs a whole new approach and a good place to start would be to very publically consign the two deeply flawed and now discredited HRT studies to the history books forever.  The benefits of taking HRT are immeasureable and make a huge different to your long term health in terms of cognitive function, heart function, blood pressure, bone density, the list is endless.  The benefits of HRT far outweigh the risks. 

Going forward, you can do several things, tell him you want to take Tibolone indefinitely and get him to prescribe it or find a private doctor who will prescribe it for you.  I know someone who manages to get a private prescription for Tibolone in the UK but she buys it over the counter and without a prescription in Spain because it is cheaper. 

In years to come, this type of appalling menopause treatment will be cited in medical books instructing doctors how not to do things. 

I hope you get back to how you were as quickly as possible.   

Thanks Mary G. To be honest since coming off HRT I've been doing my own research and I think he was wrong too, to say he wants me off it after 5 years. However he has said that he will accept whatever I decide, I now know that maybe I was a bit premature in coming off it. The benefits do far outweigh the risks. Thank you for your post, it's helped a lot.

[minuette]

Heavens above - I had only just started on HRT at your age and still on it in my 60's ( transdermal = patch HRT). A friend of mine took Livial into her 60's and then doc said she should stop - fair enough if you have other risks - but certainly not at your age.

Sounds like your doc is of the old fashioned view that HRT should be taken at the lowest dose for the least possible time!

Just to clarify re the risks - there is a lot of sometimes conflicting information about these and work still to be done - but the general view from gynaecologists is that there are risks (but this could be specific to a particular type of HRT) in taking HRT for longer than 5 years but that up until age 60 if you have no other risk factors then the benefits exceed the risks. Between the ages of 60 and 70 the benefits and risks are about equal, and over 70 the risks may outweigh the benefits especially if you have other risk factors.

This is very simplified view but is the general rule of thumb used by up to date gynaecologists. The information is here:
http://www.menopausematters.co.uk/balance.php

There is information about risks and benefits here:
http://www.menopausematters.co.uk/risks.php
http://www.menopausematters.co.uk/benefit.php

Provided you keep well within alcohol limits are a healthy BMI - and not overweight, don't smoke and eat a healthy diet with plenty of exercise - there is no reason why you should be more at risk of stroke for example.

Please go back to your GP and request to continue - if you were happy with this product - and especially as you are doing a Masters! You want your body and brain to be in the best possible shape!

Hurdity x

Thanks Hurdity, yes I do need my body and brain in the best shape possible (whatever that is 😄) for doing the Masters so I'll be going back on it. Thanks for the links also, that's really helpful.

[Hurdity]

No problem - all the information is available on this website - just go to top tabs and follow the links and a whole new world will open up for you  . Check out all the news and press archive too and back articles from the magaizne.

Hurdity x

[Blakeygray]

MaryG,  Hurdity and Annie,  I think your replies are invaluable.  I'm doing the mental equivalent of standing up and giving you all a round of applause.

Thank goodness for this forum and the women on it.

[Annie0710]

Aw thanks Blakeygray x