Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: lubylou on March 11, 2014, 05:53:37 PM
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Hi
Has anyone here taken HRT because your GP just said take it without telling you that you would have rebound symptoms when you stopped?
I ask because I have just had a chat with a pharmacist who told me lots of women he sees we're put on HRT (like me, often not because of any symptoms except erratic periods - this was back in the day) women just being told it would offer protection to heart bones skin etc and briefly told risk "so many in a 1000". They weren't told that when HRT was stopped menopausal symptoms would rear its ugly head. Apparently there are many women who have their life's in bits now because of this. And with unhelpful GP support them at this time with age /date cut of dates? I have no idea how they cope being told they cannot have HRT, something I hope is changing amongst most GPs
I was also told that there are many women in their 70s who are still taking HRT and no one is asking then to stop HRT.
I am beginning to read a bit about this and whether taking HRT in the long term HRT makes the "rebound" symptoms worse (say if it was necessary to take longer if you had early menopause or hysterectomy). So far I have found a few sites which seen to say this, but they are not peer reviewed science studies but I will kept looking.
My guess it that there has been little or no research into this and doubt the NICE review will have this as part of its scope.
If I had my time again I would not have taken HRT unless and until I got symptoms which impacted on my life. My GP was insistent I stayed in until I was 55 , why I don,t know! I recall there was a thread started by someone who had a similar experience and was still struggling many year on.
Anyway, just some food for thought.
Lubylou
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Luby- it's not a case of one size fits all with any of this.
For a start no one can put a woman on HRT unless she agrees- we are not passive creatures- we have minds of our own to do research and weigh up the pros and cons. For anyone who has an early menopause then that is the right treatment though.
Many GPs are not well informed about HRT and to be fair to them, they probably thought they were being helpful if a woman was having some meno symptoms like erratic periods.
I've been on HRT for 5.5 years and it was only one of the options offered to me by my gynae ( who I was seeing for other reasons pre meno.)
I know that he does not think of it as the only option for women and it's no longer the first line of treatment for hearts and bones unless there are strong reasons to give it- such as early menopause.
There is some info on whether symptoms return after stopping HRT- it was in another paper by Panay and he said it's 50-50, which is what my consultant says too.
But now, there is no need to stop HRT ever, if a woman is willing to accept the small risks over quality of life.
I know a friend of a friend who is 73 and has gone back on it after a 6 month break ( insisted on by her GP) and she says she will take it forever even if it means a few years off her life. She has been taking it for over 20 years.
I think my own mum has missed out on many years where she suffered with menopausal symptoms ( flushes and lack of sleep for almost 30 years) which she would not have had if she'd been on HRT but her dr was not keen to start her on it in her 60s so many years after menopause at 53. Like many women she tried to ride out the early years thinking it would get better in a few years, but it didn't.
women whose lives are in bits because they took HRT - well, presumably they have had some good years which they would not have had? It's a balance isn't it- thinking about the possible long term outcomes ( which are different for everyone) and weighing up the benefits.
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My GP told me straight away that HRT was not a way to get through the menopause but a way to delay it. She also said that some women only have symptoms for a short time after stopping, some women have none and some women go back to square one and feel like they did before starting HRT. In the case of early or premature menopause then those years before 50 don't count and it is necessary for heart and bone protection. It is the length of time our bodies are exposed to oestrogen that leads to risk I think. The usual age to stop HRT to see where you are as far as meno is concerned is 50/51 but it could be that your doc was bringing in the "five year" rule which is out of date now.
It stands to reason that if we are experiencing meno symptoms because of the fall in oestrogen and by giving our bodies oestrogen we are alleviating the symptoms then once we stop the oestrogen symptoms may return.
I am one of the ones who have gone back to how I was before starting HRT but I have had almost seven years of feeling much better and two friends who didn't take HRT are still suffering seven years on.
No easy answer.
Taz x
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But it's still annoying Taz that GPs are misinforming women.
For many women- about half- it does not simply delay menopause.
I've asked my consultant about this and his answer is it's about 50-50.
I think it's wrong that GPs peddle myths which potentially scare women .
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I'm not sure where the 50-50 figure is from though. I suppose that those who stop and don't suffer any more symptoms aren't posting on here so we get skewed numbers.
Taz x
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As has been said lubylou - there is no knowing how anyone will react after stopping HRT!
I think Taz has put the main categories - and I doubt whether it is understood which group you will fall into, and whether taking HRT itself will influence how you will subsequently react.
I would agree that the overall health benefits, and the years of well-being from taking HRT, for most women far outweigh the future negative impact of symptoms - but of course if you are one of the unlucky ones that will continue to have them for years you might not think so.
However what if you were one of those who would have had them for years anyway? Surely it is still worth taking HRT for some years because at least you will have had those years?
Re the 50 percent - I would want to see the paper that produced this result - I imagine this may be one study, but until we know what was being investigated I will remain sceptical! Unfortunately many papers we can't get access to because you have to pay - the abstracts do not give the study design nor the detailed results (I don't agree with this!).
For example here are two papers that discuss this:
The first discusses gradual tapering vs abrupt cessation of HRT:
http://www.ncbi.nlm.nih.gov/pubmed/16735933
That study only consisted of 91 women and did not give the figure for how many actually had their symptoms returning - the main conclusion of the paper was that there was no significant difference in outcome after 12 months between the two groups (ie gradual or abrupt).
Another study - which Panay is a co-author, is this one:
http://www.ncbi.nlm.nih.gov/pubmed/21903711
Very interesting though it is, the abstract doesn't give the percentage of women who had a return of symptoms, and even if it did, also of course it is a greatly biased sample (ie women on Menopause Matters who returned a questionnaire) so is likely to vastly over-estimate the actual number in the general population of women taking and stopping HRT. In any case as far as I can make out, the survey was actually designed to find out how many women stopped taking HRT after the WHI study and subsequent advice which is a different question.
Because we will never know what would have happened if we hadn't taken HRT - to use HRT or not is a decision which needs to be taken in terms of how you feel at the time and at that stage in your life, taking into account the health benefits of taking it, improvement to well-being, and compared to the risks, and versus the negative impact of your health and well-being for the few years that you are experiencing negative symptoms, if you don't take it. For many also the health benefits will be long term.
Regarding the NICE guidelines - they are looking into whether stopping abruptly or gradual tapering gives different results re symptoms - but this will only be on the basis of current published reserach. I've been looking too and whenever there is something promising - the paper is inaccessible!
I can't remember when you started HRT lubylou but I do hope that on the whole you feel it was worth it - sorry - I'm lost as to where you are now with it, how long you took it for and how old you are!.
I've gone off on a bit of a ramble here again - oops ;D
Hurdity x
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Your rambles are always informative Hurdity!
Taz x ;D
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;D I suddenly realised I had been half an hour looking up stuff - I get side tracked chasing around looking for papers and thinking aloud!!
Hurdity :)
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Where are these GPs who just give out HRT?
I had to ask, very nicely before I got it. Even then it was from a very nice female doc who was well informed and knew which way was up!
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I don't think there has been any formal research on how women react after stopping HRT- I was referring to anecdotal 'evidence' in something I found online and think it was by Panay. (It was part of some other research and almost as an 'aside'.) There is no benefit in conducting scientific trials by the drug companies on this because they would not stand to gain. The research on the safety of HRT should help women decide how long they want to carry on with it. I think the current research is more about how HRT can be tailored to the individual with lower doses and different combinations of HRT.
Consultants who are treating hundreds of women for menopause with HRT are able to give anecdotal figures, based on their patients, and I think this is the best we can hope for!
There is some evidence on ( yet another!) Panay paper which shows that roughly a third of women have taken up HRT again after stopping re. the scares of the WHI trials.
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"no one can put a woman on HRT unless she agrees- we are not passive creatures- we have minds of our own to do research and weigh up the pros and cons"
Well said Sarah2, couldn't agree more.
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If there are ladies who have had symptoms for 30 years without HRT, then if they had taken HRT for ten years, stopped and suffered symptoms again then they might say its HRT rebound . How could anyone possibly know the answer to this.
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I don't think that is what people are saying.
They are saying that in some women HRT delays meno symptoms and they have to go through it all once they stop HRT.
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I don't think there has been any formal research on how women react after stopping HRT.
There is some evidence on (yet another!) Panay paper which shows that roughly a third of women have taken up HRT again after stopping re. the scares of the WHI trials.
The paper I referred (and linked) to in my long post below is formal research, Sarah - albeit limited!
It would be good to have the reference to the Panay paper - the other paper I referred to below (and linked to) included Panay as an author (as well as Dr Currie) - and that was about the WHI study and attitudes - based on a questionnaire carried out on here? Might this be the same study? No data are given about resumption of HRT in the abstract though and as I pointed out, nor about the proportion whose symptoms returned.
Of the 3 groups (no return of symptoms, resumption of symptoms for a while ie having to go through menopause, and resumption of symptoms for a long time/for ever), I would have thought that even those who have to "go through it all" - the middle group - would not experience the symptoms over the same period of time as they would have done before. I have no evidence for this but the peri-menopause can last many years with hormonal fluctuations happening constantly. Cessation of HRT results in a simple decline of oestrogen and no fluctuations. One would hope that the symptoms would last for a shorter time than during the whole menopausal transition.
All I want to say is - as an optimist, I want to risk it, and in fact I am risking it - even if I eventually have to have 3 years of flushes etc - I want to be able to choose when I might experience these! For a start when I have finished working, children all happily living away from home, and I can lounge about in bed until 9 am if I haven't slept all night, and hopefully just generally relax a bit more. Life circumstances (illness in relatives) may get in the way but still I think it will be much easier to cope with.....
Hopefully not famous last words!!!!
Hurdity x
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Personally for me hrt has helped with the anxiety mood etc this past 10 years and its only now that i can come off it and be able to cope whereas last year i tried and i was a wreck! I can only think and hope that those were the worst of the emotional side of menopause!
I am not ruling out going back on it - mine is estrogen only and so apparently carries less risk as when combined with a progestogen. x
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Hurdity as ever a good balanced response but I still say that one could never know as every individual is different so impossible to run studies unless one had a doppelganger or be an identical twin .Thats the only way you would know personally if it delayed menapause for you as an individual. Theres plenty of evidence on here of ladies who have been helped by HRT for a few years and then come of it with varying degrees of ease and there are ladies whose symptoms were as bad as when they first started.
All I can say is I am very grateful for my oestrogen patch . :)
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I am one of the ladies who has not had any rebound effects, I stopped my estrogen patch about six weeks ago after an attack of Uticaria, I feel fine now and no symptoms.
I was on a low dose patch for maintenance not for menopause symptoms as I have never had many, we are all so different in how we respond.
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I stopped HRT almost 2 years ago after being on it for 5-6 years. Apart from 1 hot flush and it taking a few weeks to get back into a sleeping pattern, I have had no other symptoms. The only thing I notice is lack of energy but that could be age rather than lack of HRT (now 60).
Bramble
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That's interesting Bramble. What your symptoms before going onto HRT? I am envious!
Taz x
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I had bad hot flushes, always preceded by a mini panic attack. Plus very high anxiety levels, (never been anxious before), full blown panic attacks, tiredness, bad joint and muscle pain etc etc.
I did take about six months to gradually wean myself off a low dose HRT - whether that made a difference or not I do not know.
Bramble
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It's the flushes I'm interested in. Mine are exactly as they were almost seven years ago when I started HRT. I seem to have settled back into the same pattern of every thirty minutes on a good day and every twenty on a not so good day :(
Taz x
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Hi
Sorry not responded before now. Because of what is in my response /reply post I have put it in members only area (personal info) hope that is OK.
Bramble I would be interested to know what brand of low dose you were on, it was when I tried to reduce my low dose that my night furnace symptom got worse and anxiety like constant adrenaline started for first time. Could be coincidence of course.
Lubylou