Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: honeybun on August 24, 2013, 12:52:27 PM
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It controls most of the flushes during the day but the night time ones are still there. Muscle aches and pains are still as bad as ever.
It does nothing for my anxiety so I am beginning to wonder why I am taking it.
I would continue with Vagifem for vaginal and bladder health.
If I came off it I could take St John's Wort which has always helped me.
I am very tempted to stop and see where exactly I am in meno as I have not got a clue. I am 53 now and have been on HRT for exactly four years now. Before I started I had been 7 months without a period.
Oh .....What to do. I suppose if it was unmanageable I could always start again.
Honeyb
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Nothing wrong in trying HB. Only thing I'd say is do it gradually as cold turkey is not nice. I've to try reducing mine again in the New Year. Your body will soon let you know whether now is the time or not.
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I went for my review a few weeks ago, the doctor said for me to start weaning myself off it in December. ( I will have been on it 2 1/2 years by then). She said to do it gradually and it's always better to come off in the winter because of the temperature.
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I've tried both the weaning off method and the cold turkey method and, to be honest, it has been just as horrible both ways and I have restarted. Didn't you stop a while ago Honeybun to see if your anxiety improved?
Taz x
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It *is* getting close to C.mas and all *that* entales ......... ::)
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That's why I was told to wait until the New Year.
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Taz you are right I did try before but I did not take anything else such as St John's Wort.
I have decided just to give it a go. I can always start again if I need to. I am fed up feeling rubbish so who knows perhaps I will get on ok without it as I really don't feel as if it's doing anything for me at all. What's the point if I don't feel good.
I have taken my patch off and I will give it a few months to see how things go.
I have also bought a few vitamins to see if I can go down the natural route.
I just want to feel like me again. I was talking to hubby about all the things I used to do. That woman must be in here somewhere and I want her back.
Maybe this way I can do that.
Clutching at straws. :(
Honeyb
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Fingers crossed for you but don't be too hard on yourself. :bighug:
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Hope it goes well.
As you say, you can always start HRT again if you want to
:hug:
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Good luck honeybun, i hope it goes well for you. Its so heartening to hear success stories so keep us up to date. You've decided to go cold turkey i see, i guess if you feel its not given you any improvements it wont matter if you just go for it.
Fingers crossed for you.
Delilah x
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Thanks all.
I could be running back to the HRT in a few weeks wondering what on earth I was thinking about but I am going to give it a good try this time. I know I can't feel any worse and its going to have to happen sometime during the next year as my surgery press for you to stop after five years. The last time I saw the GP he asked me how I intended to stop. I got the message loud and clear. I can't even change to a different practice as we only have the one here.
Honeyb
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I'm now wondering why I have stopped when I have another six months before I'm 60! I suppose I just wanted to see what it's going to be like and now I know it's not cheered me up! It's nice to not feel bloated and to have lost a few pounds but the hot sweats are building up again now. I'm three weeks off it. I lasted three months before when I gave it up. I guess then I must have had more of my own oestrogen kicking around but now without the patches my own level is very low.
Good luck Honeybun. I hope you find that you are one of the women who come off with no side effects at all - like my mum did after a year on it.
Taz x
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Good luck Honeybun. With your GPs having such a rigid timescale, they should back you. Plus if you do feel you need more oestrogen again, they can see that you tried and hopefully will help you.
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A lot of GPs and meno clinics have cut off dates no matter what you say. My surgery is five years and stop and others are stop at 60. Don't know that we get much say in the matter.
Honeyb
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So sorry to hear everyone's woes and problems with HRT.
Honeybun - if you were still having night sweats then to me that indicates the oestrogen level is not high enough. The thing is from what you say, you started HRT when you were still peri - and probably the dose was sufficient as you still had some your own oestrogen. Approx two years from the date of your last real period (ie true menopause - many of us don't know when that is because we go onto HRT before this time) your oestrogen (estradiol) drops to its lowest and remains there from what I understand.
After this it could well be that you need a slightly higher dose for a while as symptoms begin to kick in again. My feeling is that you could try a slightly higher dose eg 75 mcg. After all you are still young. I only started HRT just before I was 54.
I am sorry to hear that your anxiety hasn't improved with the change in HRT - so maybe the progestogen wasn't the problem - or at least not the only problem? However as others have said - going cold turkey re HRT can be tricky. For me the symtpoms started to come back probably around 6 weeks - 2 months and they were much worse in that I had symptoms I never experienced before - but I can understand your frustration.
I would not want to be without it though, while there are no medical reasons for me not to be on it.
Various of you in this thread have mentioned cut off times and what the doctors have siad.
littleminnie - I am appalled at what they have said to you!
I really do think that it is up to us as women to decide how long we want to stay on HRT - and make sure we are not dictated to by the medical profession - particularly as many are not as informed as they could be.
From what I have read the most up to date current thinking (including Dr Currie who started this site) is that, provided we are told the risks (well the "official" risks - which come from the Womens Health Initiative Study etc - and which are on all the packs of HRT/oestrogen that you can buy) - then it is up to us to decide whether or not to accept those risks.
Please - if you want to stay on HRT, and there is no medical reason why you shouldn't stay on it, and you are happy on it - then make sure you speak out. I think it is important to be clued up and state where your opinion comes from.
The latest statement from the British Menopause Society/Women's Health Concern (2013) by Nick Panay et al had this to say:
The HRT dosage, regimen and duration should be individualised, with annual evaluation of pros and cons.......
If HRT is to be used in women over 60 years of age, lower doses should be started, preferably with a transdermal route of administration.
These statements have been made taking into account the latest research findings.
Yes you do have a say, but it does take courage to speak out - and it is disgraceful that women who are at a vulnerable stage in their lives are put in the position where they have to argue their case.
Those who are being asked to come off because of the published risks (from the WHI and MWS) please get referred to a meno clinic if you can and speak to a gynae doctor and quote the latest info.
It is your right!
Hurdity x
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:thankyou:
the thing to do is not to wait until nearly the end of the 'recommended' time but to have indepth discussions with all the GPs if necessary in the Practice. You can as an emergency or temp patient register elsewhere. Or e-mail a few Surgeries to see what their Policies are. As we age it gets more expensive to maintain us and some Surgeries are ageist >:(
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CLKD my next nearest surgeries are 15 miles in each direction.
Hurdity I did try upping my oestrogen a good while ago with my doctors approval. It made me feel very unwell and so I cut back again.
I am giving this a go to see, if nothing else, where I am regards menopause. Hindsight is a wonderful thing. Four years ago when I had gone eight months with no period if I had known then what I know now I should have waited to see if I had a bleed within the twelve months. Perhaps things would have started to improve.
I also have two fibroids that concern me as to whether I am causing them to grow.
As I said before I may well be hurrying back to my HRT in a few weeks wondering what I was thinking.
Honeyb
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Why do you have a cut off date of 60 Taz?
You might live to be 90 ... are you serious about going maybe 30 years without hormones?
I just posted on another thread that I will be put on a lower dose in a years time. I am scared already!! ;D I feel so well and am very seldom ill. HRT seems to really suit me but I did have to try several before I found one that suited me.
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You are very lucky PF. It's my anxiety that is the big problem for me and ADs don't suit me. Well I tried one and don't want to go down that road again.
As the HRT does not help the anxiety I wondered why I was taking it. Who knows I may be past the hot flushes.
I wish I had a magic wand that would sort us all.
Honeyb
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Why do you have a cut off date of 60 Taz?
You might live to be 90 ... are you serious about going maybe 30 years without hormones?
The menopause clinic I used to go to has 60 as their cut off date but my GP, after spelling out all the risks, will probably let me continue although 60 is also the usual cut off date there too. There has not been much research carried out as to the effects of women still taking HRT after the age of 60. I am not sure to be honest what I want to do. I don't want to go years feeling rubbish but, then again, I don't want to die early from breast cancer or (more likely) a stroke.
Taz x
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I wonder why different doctors have such different ideas as to how long you should take it or what age you should stop.
If I were to take HRT until I was 60 then I would be on it for 11 years. I really don't fancy that.
There should be guidelines given to the medical community so they and we knew what was the best thing to do.
After all it only effects half the population ::)
Honeyb
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I think the actual guidelines are that women over the age of 60 have to be informed of their risk if they continue with HRT. This is what my GP said anyway when she sat me down and gave me the facts and figures. Afterwards she said that she had carried out her "duty of care" in advising me of the possible outcome. It was all very serious.
Taz x
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The female GP that I normally see was very insistent that five years was long enough. The GP that is a friend could probably be persuaded to let me stay on longer but he is retiring quite soon I would think so then I would be up that creek without a paddle.
The two older nurses who were great with HRT have also retired.
Don't know where I would go to find someone who would prescribe if I get into that situation.
We have one medical facility in the town nearest me and nothing in the village. No meno clinic locally either. Nearest is 40 miles away.
Honeyb
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My meno consultant is happy for me to stay on my Estradot until I'm 60, even though I've been on it for a number of years. She told me because I started it when I was a lot younger the oestrogen will have in effect "preserved" my arteries in whatever state they were in when I started. Unfortunately no way of finding out how good they were back then though, so it's just guess work. However, I have to try & come off it again in New Year, by firstly halving my current dose and if OK come off altogether.
GPs advice varies so much though. It's no wonder we're all confused. Maybe by time my daughter is hitting menopause they will have decided on right course of action.
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My GP is happy to stay on low dose estrogen patch for as long I want of cause it might be because when I had my DEXA scan it was advised that
I went on HRT and that was before my partial hysterectomy on 2001.
I have read that women can safely start to take estrogen after the age of seventy if its for bones and vaginal health.
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The reason GP advice varies is because they are not up to date with current thinking. Unfortunately the NICE guidelines are only just starting to be revised and this will take a couple of years ( Dr Currie posted about this on the forum).
As I said below, if any of you want to stay on HRT and there is no medical reason for you personally to stop, then you should be given it. As Taz said - as long as you are aware of the risks (as they are reported from the Women's Health Initiative Study and the Million Women Study) then it should be your decision. If you really want to stay on HRT then don't be fobbed off!!
If the doctor refuses to give it to you and tried to make you come off against your will, then make sure you get a referral to a meno clinic. I appreciate these are few and far between - my nearest one is 60 miles away but if my GP practice wasn't sympathetic I would insist on a referral. It's not far to go for a treatment to make me feel well!
Honeybun - if you get into the situation where you would like HRT and are refused then I presume you would go the 40 miles if it was going to make a huge difference? I can appreciate your dilemma at the moment - trying different things to find out what makes you feel best, but anxiety aside, the oestrogen is sure to be doing you good. Hopefully your symptoms won't return too badly too soon....
Hurdity x
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Hurdity - it was my meno clinic which insisted I have to come off at 60 - as is the policy for all of their women which is why I returned to my GP for meno care.
Taz x
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It would be great just to take oestrogen but that's not an option unfortunately.
I feel fine up till now. Night heat is still the same not helped by the memory foam mattress topper that I bought. Heck does that thing generate heat. It's comfy though.
Onwards we go to see what happens. Better having flushes coming into the winter than through that heatwave though.
Honeyb
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Yes oestrogen alone would be bliss!
Taz yes I do remember now you said that - sorry I'm not concentrating. It is puzzling though as usually the reverse? I wonder why the meno clinic is saying this? Usually the specialist gynaes are the ones who are more flexible and will allow individualised treatment, and up to date with all the literature and research findings. I presume if you decide you really do want to continue post 60, with your knowledge and experience you would be able to persuade or insist that you should continue - do you think?
Personally I can't face it ie stopping, as I even noticed the effects if a reduction in dose from 50 mcg to 37.5 mcg - bringing back some flushes, causing more disturbed sleep, and increased frequency of getting up (to wee!) at night. Have gone back up to 50 mcg.....
Hurdity x
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The menopause clinics really research the effects of using HRT after the age of 60. My specialist spent quite a while showing me the various data and statistics about the risk of stroke (not so bad on patches) and breast cancer (well known on the combined HRT). They were happy to pass me back to my GP for continuation of HRT after 60. It made me think that as specialists then they know what they are talking about. I am not sure that it is the reverse to be honest. There don't seem to have been many studies carried out on women over the age of 60.
My GP will continue to prescribe it now that I am aware of the risks and she feels she has given me a good explanation of what might happen. It is a difficult decision having lost two friends to oestrogen dependent breast cancer over the past eighteen months. One was on HRT and one had only taken it for three years and stopped two years before diagnosis. They were aged 59 and 63. The 63 year old was on HRT when diagnosed. I feel I could cope without HRT if I didn't have to work and living on my own!!
Taz :)
Taz x
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I agree with what Stellajane said and also very sorry to hear about your friends Taz.
I understand what you are saying re your specialist but my own personal view (and it is really only this) is that I go on what they said in the latest paper in my earlier post below, and additionally the gynae I saw last week also said he felt the risks were very small, and was happy for me to continue. The research on which the stated risks are based, was carried out using conjugated equine oestrogens and a synthetic progestogen taken orally, so I don't feel they are necessarily applicable to bio-identical HRT taken transdermally, and as you say evidence from other countries is beginning to show that patches are associated with lower risks.
There is a definite need for more research as you say - especially on women over 60 and long term use of HRT, but I doubt that such a study will be funded.
In the meantime - it may well be a gamble and we have to decide this for ourselves. I know I also couldn't work if I didn't use HRT, but will re-visit this when I retire :). I have a friend similarly - who is 2 years older than I am - so now 62 - still taking HRT pills because she has to continue working for a while yet.
I try to keep myself as healthy as possible in other ways to minimise the risks and just have to hope for the best..... I think it's important having made the decision (to stay on HRT), not to worry as I know this can have adverse health impacts.
I understand and sympathise with everything all of you are saying, but the main thing I feel strongly about, is the decision should be ours to make and not the medical profession.
Hurdity x
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Great advice from Hurdity, I have just had my Estradot patch upped to 100 from 75 , I am 56, was still having one hot sweat at night and some anxiety. My GP said lets try and get rid of that, certainly better , would have like to been able to try 85 or 90 - and i know you can cut up patches, just to see if a small tweak helped . The increased dose has stopped the heart flutterings which I used to get in the evening and had never completely been banished . There are so many things we do that can hurt our long term health and possibly the HRT debate can get a bit out of perspective, I suspect the contraceptive pill has long term side effects but dont see much about that - however could be I am not looking as its no longer appropriate to me, :)
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Well it's just over a week now since I stopped.
Daytime is fine, no flushes as yet. Night time is a bit of a different story. I was sleeping badly before I stopped but now the night heat is being joined with sweats which are not pleasant as we all know.
I would give a small fortune just to sleep well. Just have to wait and see how it goes.
My anxiety is not at all bad at the moment and as this is my main aim then I feel hopeful that this will continue.
I am also less bloated than I have been for months.
Honeyb
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My withdrawal has kicked in big time Honeybun - but it's four weeks since I stopped. I know what to expect as this is the third time of trying.
It was really embarrassing today at work when the boss explained a different way of doing things to me and I was mid sweat. As I got more and more uncomfortable and began to sweat she thought I was getting upset!!
It's good that you are less bloated - focus on the positive things!!
Taz x
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The menopause clinics really research the effects of using HRT after the age of 60. My specialist spent quite a while showing me the various data and statistics about the risk of stroke (not so bad on patches) and breast cancer (well known on the combined HRT). They were happy to pass me back to my GP for continuation of HRT after 60. It made me think that as specialists then they know what they are talking about. I am not sure that it is the reverse to be honest. There don't seem to have been many studies carried out on women over the age of 60.
My GP will continue to prescribe it now that I am aware of the risks and she feels she has given me a good explanation of what might happen. It is a difficult decision having lost two friends to oestrogen dependent breast cancer over the past eighteen months. One was on HRT and one had only taken it for three years and stopped two years before diagnosis. They were aged 59 and 63. The 63 year old was on HRT when diagnosed. I feel I could cope without HRT if I didn't have to work and living on my own!!
Taz :)
Taz x
I didnt know you were on our own sorry xxx
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Well it's just over a week now since I stopped.
Daytime is fine, no flushes as yet. Night time is a bit of a different story. I was sleeping badly before I stopped but now the night heat is being joined with sweats which are not pleasant as we all know.
I would give a small fortune just to sleep well. Just have to wait and see how it goes.
My anxiety is not at all bad at the moment and as this is my main aim then I feel hopeful that this will continue.
I am also less bloated than I have been for months.
Honeyb
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well done you xxxxxxxxxxxx
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Just wonder if I will be able to cope if the daytime flushes return.
What are you going to do Taz, have you decided yet. Did your boss finally figure things out. It's difficult to concentrate when that's happening as it becomes the only thing you can focus on.
I really don't want to go back on HRT unless things become unbearable as instead of helping my anxiety it really seems to make it worse.
I know that I don't have to hold down a job but being able to cope calmly with my mother is important.
She is enough to give anyone a hot flush even if they are not menopausal ;D
Honeyb
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Suzi - I am not living on my own but I meant that it would be better if I was and didn't have to accommodate other people! Sounds a bit strange but I would like to freeze-frame everyone and then restart them when I am feeling better.
My boss is younger than me but has had a few flushes herself - not sweats though. I did say "hot flush" in the end while waving my notebook in front of my face. I have found it pays to be honest although, being the oldest one at my workplace, I am often looked at with disbelief and I think "You just wait.. you just wait" ;D
Taz x
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Oh Taz, I so understand where you're coming from. I'm just starting a lower dose (Femoston 1/10) as I will be 60 next year, but at the same time, I'm really concerned as to how I'll cope, as I too will have to work, full-time, until I'm 65.
I'm seriously considering packing in the red wine instead...............I'm sure that will be easier than stopping HRT!!! My mother came off HRT at the age of 73 and she still says it was the biggest mistake of her life.
Let us know how you're getting on.
Jaydee X
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I've been off HRT since 11/08/13 & the flushes kicked in within a few days.
I then started to get weepy & not able to concentrate but this could have been put down to other worrying issues.
I want to stay off them for another 6 weeks to see how my body responds.
I had my mirena coil removed 12/06/13 & 2 days ago I had a polyp removed from my uterus, so I guess a lot is going on at the moment, but I need to let things settle if I can, as I feel that maybe the time is right to get on with my life & not have to rely on HRT. My job is not so demanding as it was 6 years ago when I started HRT so I am hoping I can ride it out....time will tell.
Good Luck to all trying.
Cazi xxx
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Things all still good.
Anxiety is really quite good and feeling much better. Scared to say too much about that in case I jinx things. Let's just say up till this minute I feel better than I have in a very long time.
Honeyb
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There will NEVER be research if women are refused HRT after the age of 60. Maybe this is because older patients cost more to maintain and if we aren't given HRT that is one less cost for the Surgery? Perhaps if ladies tell GPs that they are suicidal without HRT?
There are many reasons why people suffer stroke, cancer, heart disease ......... etc., etc., etc.; we should have it if we require it, after all, we need food to maintain health, if we require medication then it should be prescribed. Why should the cut off age be 60 rather than 80? Why not 61, 65, 63 and a half? ....... >:(
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But if you can come off and feel ok then that's good too surely.
I am not saying that's it for me and no matter what I will never again take HRT because if all the problems return full force I will be back like a shot.
I just think it would be good to know where exactly I am with regards to meno.
Honeyb
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Hi Stella - I think that the difference between your thyroid hormone and HRT is that it is thought that the cancer risk is down to how long the body is exposed to oestrogen. Obviously the thyroid is present in the body for all of our lives whereas exposure to oestrogen is not naturally lifelong. I'm not sure why the stroke risk increases as we get older though.
I agree that symptoms can be really horrible and that we can make our own decision. I have been made aware of all the risks I will be facing should I continue with HRT into my sixties and I will still be able to have it prescribed if I want to go down that route.
Honeybun - from what I gather in most women the meno might have been "halted" by you taking HRT rather than you continuing to progress through it but you may get through the symptoms faster when you stop - if that makes sense! I find that mine are exactly as they were six years ago when I began it but at least I have had quite a few years feeling better although I really think I will struggle without it while I am still working so it may be that 65 will be a better cut off for me.. if I live that long!
Taz x
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I too wish to come off my HRT and for very much he same reasons as Honeybun. I am 51 and have been on HRt for just over a year now. I have had a mirena Colin for a good few years now so also never knew where I am in the whole menopause cycle. I too suffered from dreadful anxiety , lack of sleep due to night sweats and anxiety so decided to try HRT. I have also ended up on ADs and my anxiety is ok but not completely controlled. I too feel generally yuk and wonder where the old me might be hiding. I don't recognise the person in the mirror anymore.
Anyway, I am on 50mg patch so have decided to cut down to 25mg and see what happens.
How quickly might I notice the difference in strength?
Thanks for taking the time to read this.
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When I saw my gynae on Thursday he said that my problem with being on sequi is that my body has changed it's needs! I asked him why could I now not be suited to hrt after 2.5 yrs on it? That was his answer. Eddie. X
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Sorry if I missed it.
What was the outcome Eddie?
Are you on or off now.
Honeyb
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I'm not coming off just yet, I am going to try femoston conti for a few months to see if it suits me better.
You sound like you are managing to stop?
Eddie. X
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Glad it's helping your anxiety HB. I know that was your main reason for trying to come off it, so fingers crossed for you.
Sorry it's not so good for you Taz, but you're right, best being honest.
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It's normally ok for the first few weeks - takes around three months for it to settle down to being back where it was six years ago! Today hasn't been so bad and it is nice not to be so bloated I must admit and, I've noticed, no heartburn or indigestion anymore either. Bonus! I'm five weeks off it now - prolapse is complaining bitterly :D
Taz x
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Two weeks off today. The one thing I am noticing is a bit of a return of my IBS which is the last thing I wanted.
Why does it always have to be so hard ALL the time. The rest I can probably cope with when it comes but the IBS just knocks me for six. I can control it with my herbal drops but I hate the uncertainty of not knowing when it's going to strike.
Who would be a woman that's what I want to know. Mother nature did us no favours that's for sure.
Honeyb
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Men ain't got a clue. When I said that hubby turned round & said that men don't escape symptom free! Yeh right. Loss of hair, hair sprouting from ears. Tough eh? Unless of course he meant listening to us moaning. ::)
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He probably did ;D and my hubby would probably agree.
Honeyb
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I've been off HRT since 11/08/13.
Hot flushes are the worse for me, especially at work.
Being in an office with a 19 year old girl & a 24 year old woman plus a 50 year old man is not easy.
The man doesn't understand at all ???.
The 24 year old rushes to get me a glass of water :o & the 19 year old couldn't give a toss.
I hate it but want to give it a bit longer if I can to see if things get any easier.
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I sympathise. I came off it a few years back. It was horrid. Fortunately I don't work. I would have needed signing off. Flushes, sweats, chills, everything. I was looking after my eldest grandchild at the time. She was going through the terrible 2's and granny was menopausal. Great mix I can tell you! I was wiped out! GP put me back on HRT again after 8 months. It was such a relief. I am trying to gradually reduce my dose over a long period of time. Have to half it in the New Year with a view to coming off it totally. Time will tell though.
Don't be too hard on yourself if it doesn't work for you this time though. What about cool scarves to help you at work? I have 3 which I would rotate. Would a Chillow be possible to use at work?
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This is for Honeybun and my first post. I read your posts about coming off hrt a while back and wondered how you got on. I have been on less than a year and thinking about it too. I am 46 but it so not helping my low mood so starting to doubt its use. Not getting hot sweats but insomnia and anxiety. KL
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Hi KingLiz
:welcomemm:
Depends where you are in menopause as to its effectiveness really and what you are taking it for - also the type of HRT can make such a difference. Don't give up yet - why not introduce yourself in the new members section and tell us something about yourself - where you are in menopause etc and perhpas we can help a bit more? :)
Hurdity x