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Author Topic: Coming off HRT and then......?  (Read 10146 times)

Cassie

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Coming off HRT and then......?
« on: December 23, 2013, 06:26:06 AM »

Morning lovely ladies, so during the night, my very busy, insomniac laden meno brain was buzzing away, thinking that, as I intend to reduce my HRT, being the advised thing to do when one turns 50, if just for a while, to come off it, to see where you are in the journey, I was thinking, what if I stop it and things continue as they are, ie, with no symptoms of meno at all, as I have now on the gel? Do I stay off it permanently then, I am just so worried about osteoporosis, heart health etc and have felt so great on the HRT. Chances, are, I will probably get horrendous symptoms, but at the moment, have never had any, on the HRT, so do not know what to expect. If I am symptom free, does this mean, that I am then through the meno and do not need HRT or should I stay on it rather, until 55, I am also worried about VA. I guess, I will have to see how I feel once stopping but just needed a bit of advice, for those ladies who have been through this, thankyou.
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KatieLiz

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Re: Coming off HRT and then......?
« Reply #1 on: December 23, 2013, 10:37:06 AM »

I think everyone is different and reacts with different symptoms so the only way to know how you will feel is to try it.

I didn't start HRT until after 50 years old, due to increased PMS symptoms.  I increased my HRT to 2mg after 6 months and now 2 years later have reduced back down to 1mg.  I have been taking 1mg now for nearly 5 months and I do notice a difference and its not good!  I feel much more emotional and anxious, tired and fed up and irritable and I think I am going to increase back up to 2mg once I have finished the packet I'm on.

I believe menopause is a journey and things change continually.  I just keep observing how I feel but do believe HRT is the best solution to menopause symptoms, and like you I do worry about the future problems I may have ie VA, osteoporosis etc.  I think one of the problems is that things creep up on you slowly so you're not sure whether its natural aging or your hormones imbalancing.

I dread to think what I would be like without HRT but everyone is different and you may stop it and feel fine. 
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Chrislm

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Re: Coming off HRT and then......?
« Reply #2 on: December 23, 2013, 09:12:42 PM »

Like KatieLiz, I only started taking HRT at nearly 50 so I don't know what it will be like for you Cassie. But for me, having spent several months feeling sick and tired and sweaty, I have realised just how precious quality of life is. If I were you (and this of course is just my opinion and may not be yours), if I started to feel bad and I stopped loving life, I would go straight back on HRT. The risks definitely do not outweigh the very real loss of happiness that happens when you feel bad all the time.

You are wise to see how it goes for you, and you may well feel absolutely fine without HRT. We would all come off it if we could! But if you don't, then you shouldn't feel any pressure at all about going back on.

Good luck and have a happy Christmas.
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Dancinggirl

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Re: Coming off HRT and then......?
« Reply #3 on: December 23, 2013, 10:49:52 PM »

Hi Cassie
I took a break from HRT at 49 because of all the scares back in 2002. I had been peri since my mid 30s so by 49 I was definitely way past meno. I slowly reduced the amount over a couple of months but flushes etc emerged quite quickly.  I persevered for 3 years thinking the symptoms would subside and eventually went back on HRT at 52.
I'm now 57 and taking another break from HRT & to my surprise the flushes have not returned as before.  I do notice my body temperature is a little more volatile though and I'm getting pain in my hips and lower back.  I am not desperate to go back on HRT but I am using Vagifem to treat the VA.  I now realise the burning and itching down below are often not entirely helped by full HRT and local oestrogen is needed alongside. I've obviously had VA for the last 10 years or more with no treatment and after 2 months of Vagifem I'm finally feeling a little more comfortable.
I personally feel 50 is still to young to be without oestrogen and if you are finding it good for you then continue for another 5 years.  If your doctor insists on a break perhaps give it go for 3 months but try to pick a time when you are not too stressed and certainly during winter when you can gage properly whether you are getting flushes.
If you don't get bad meno symptoms ask for Vagifem to prevent VA and try to get exercise and take Vit D to help your bones.
Hope that is helpful  DG x
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Taz2

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Re: Coming off HRT and then......?
« Reply #4 on: December 23, 2013, 11:15:41 PM »

Just wanted to say it's good that your flushes haven't returned in the same intensity DG. Mine seem to be stepping up a bit more now but I have been off it for four months. 

Taz x
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Dancinggirl

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Re: Coming off HRT and then......?
« Reply #5 on: December 24, 2013, 09:10:13 PM »

Hi Taz2
Am I right in thinking you are a teacher?  A tough and very demanding job - this kind of stressful job could be contributing to your meno symptoms. Do you think the flushes etc would bother you less if you had a calmer, easier life?
I have to say I was expecting the meno symptoms to come back strongly as before and I'm wondering if the reason they haven't is because my life is a bit less stressful at the moment - I've managed to change my job so I'm getting more rest and good long walks into my schedule.  I know it's early days as I've only been off HRT 2 months but with the last break from HRT the flushes started almost immediately.  I am feeling the cold more - I think I read a post about others experiencing this.
I also chose to take this break from HRT during the winter as, even on HRT, I find I get pretty sweaty when exerting myself these days (I'm just not as fit as I was) and during the summer I find it difficult to know if it's hot flushes or I'm just feeling hot with the summer warmth.
Like Cassie, I'm worried about osteoporosis - I had a bone scan in my late 30s and I was borderline even then.  I'm taking fish oils, glucosamine, Vit D and eating a yogurt every day for calcium in an attempt to help my bones.
Time will tell but I won't hesitate to go back on HRT if I start to get more severe symptoms again - life is too short.  DG x
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Hurdity

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Re: Coming off HRT and then......?
« Reply #6 on: December 29, 2013, 07:00:18 PM »

Hi Cassie

If you are lucky enough to be symptom free if you decide to come off it for a trial period of a few months - and your periods don't re-start (were you peri when you began HRT?) then you will be "through the meno".

However as to whether or not you "need HRT" - that is a matter of opinion. If you are post-meno by two years or more then your oestrogen will have reached its lowest level and will not increase (except for some estrone if you get overweight). Many symptoms and effects of oestrogen deficiency are long term, but most women use/take HRT initially in the short term for the most obvious and distressing symptoms of the transition time ie flushes and sweats amongst other things.

I agree with dancinggirl - 50 is too young to stop. I didn't start until I was almost 54 and I am still continuing at 60, for long term health benefits as well as quality of life. If you feel fine on it, then why not continue as you are for some years. It really is only 60 when women are (mistakenly I feel) advised to think about coming off it (or told to) and if you look at this site the risk/benefit scales are balanced in favour of HRT between age 50 and 60.
http://www.menopausematters.co.uk/balance.php


Hurdity x
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Cassie

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Re: Coming off HRT and then......?
« Reply #7 on: January 02, 2014, 01:59:38 PM »

Thankyou Hurdity! I am def post meno, went through early meno in my late 30's. As I said on one of the other posts, I ran a bit low on my gel over the holiday period and have been feeling it. Palpitations, sweating, a bit depro etc so am def going to stay on, clearly my body requires its little boost still :)
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lubylou

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Re: Coming off HRT and then......?
« Reply #8 on: January 02, 2014, 06:03:25 PM »

Hi,
I am a new member. I have joined because I too have been trying to come off HRT and I need some support now. I have been trying to reduce to a level which is liveable with for three about years. One year off completely and two year on low dose. Even on low dose HRT I had “hot nights” i.e. no sleep. I haven't been able to sleep under a duvet for three years as I can only tolerate a sheet and sometimes a lightweight cover on top. I have recently reduced to one tablet every other night over a two month period but I am now having horrendous insomnia and heat radiates off me like I am a radiator on the highest temperature setting just about all night long. It is much worse than it was when I was taking the low dose every night and came on immediately I stated to reduce and then just got worse the more I reduced. I had neither of these symptoms when I went I was put on HRT. I am going back to one tablet a night get some rest then try to reduce again but even more gradually. For some reason this is really getting me down, I have been coping over OK over the last three years thinking it would all be over by now but it seems it isn't going to be that easy. I picked now because it is colder weather in winter! I am 58 and been on HRT for a long time due to early meno and risk of bone disease. Dancingirl I am glad you are doing OK.

Last Feb my gyno seemed to think I would be able to reduce to find a level I felt comfortable with, but I have stayed the same pretty much the same over the last two years on the low dose, I really thought that I would be able to reduce the HRT without such quick and dramatic return how I was in the year I was taking no HRT at all. Going to see GP to discuss, quality of life is a high priority for me! Any thoughts or suggestions ladies?
Lubylou
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Dancinggirl

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Re: Coming off HRT and then......?
« Reply #9 on: January 02, 2014, 09:20:53 PM »

Hi lubylou and welcome
It sounds to me that you are not ready to come off HRT. Maybe you have been advised to reduce and come off HRT by 60 but as you will read there are many who go on to use HRT well into their 60s and beyond.  Provided you are healthy and you are well monitored, I believe quality of life should dictate how long you use HRT. Life is short.
I was peri in my 30s and probably post meno from my early 40s so had HRT throughout this time till I got to 49 when there were all these scares as a result of a flawed study.  I came off HRT and struggled for three years feeling hot, tired, achey etc - i lost 3 years of my life. At 53 I went back on HRT and got my life back.  This current break is not as bad as last time - I don't know why!!!!  Life is a little less stressful at the moment, it's winter &/or maybe my body has adjusted better this time - who knows! If bad symptoms do emerge I will be going back on HRT.  I am using local oestrogen to help with my painful fanny, so if you are getting problems like itching and burning get some Vagifem a.s.a.p.
Read up on everything on this site - there's some great info.
REad some of Hurdity's posts - she's 60 and still on HRT and intends to continue.
Good luck  DG x
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lubylou

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Re: Coming off HRT and then......?
« Reply #10 on: January 02, 2014, 10:47:36 PM »

Hi Dancingirl,
Thanks so much for the response, you are exactly right, I was told that I should try to reduce and come off HRT by 60. But I have had symptoms even though I have been on the low dose for just over two years. I wasn't actually given much of a choice about going on HT my GP (now retired) put me on it as I had early menopause & for my health protection and always said he wanted me to stay on it until I was 55. I did then come off completely for a year but couldn't cope so then I went on the low dose. I have had recent (and regular) mammograms and ultrasounds so I know that my breasts are OK and endometrial lining is thin. But I still have symptoms on the low dose and they haven't lessened in that time; I cannot cope with the night heat and lack of sleep. I would like to come off HRT but my quality of life is paramount as I have a health condition which means I have 24/7 chronic pain (which of itself makes sleep difficult even with pain medication).

I suppose I keep asking myself when will it be the right time to come off HRT?! I am certainly in the camp which says that assessment and then management of the risks of HRT is something the woman/patient should be able to manage and have final say on, and the decision should be ours. I hope the NICE study comes up with something positive when it reports in 2015. 

I am going to see my GP in a few weeks to discuss what I want to do, and ask for her advice, I will report back on what is said. Maybe I would be lucky and if I reduce even slower this may avoid the severity of increase in symptoms? Do you mind if I ask how slowly you titrated down? I feel so sorry for my husband as my mood has changed and I am exhausted.
Thanks so much, I feel much more supported already.
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Dancinggirl

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Re: Coming off HRT and then......?
« Reply #11 on: January 03, 2014, 04:13:34 PM »

When I came off HRT, back when I was 49, I reduced gradually over 3 months but the flushes etc emerged really quickly and didn't subside over the next 3 years.  Five years on: with this current break from HRT I reduced quite quickly over about 6 weeks and assumed the symptoms would come back quickly as before and I would just go back on HRT.  This time I have chosen a slightly less stressful period in my life - I am getting some symptoms - mainly a mild inability to control my body temperature - I'm not sleeping too well either.  However I have been surprised that the symptoms haven't been intolerable like last time.
WE are all different and whilst HRT is great and I would recommend it for anyone who finds their quality of life is impaired by meno symptoms, I have found there are always down sides - withdrawal bleeds, painful breasts, stomach cramps etc. - so, for me right now, if the local oestrogen keeps things healthy down below and I can cope with the other symptoms I am hoping I can do without HRT - time will tell.
As you rightly say - it should be a personal, well informed, choice. DG x
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lubylou

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Re: Coming off HRT and then......?
« Reply #12 on: January 03, 2014, 09:01:12 PM »

Hi,
I have been trying to manage on the low dose HRT for the last two years and all this time I have had unpleasant, but manageable symptoms. I have done so in the hope that my hormone levels would adjust naturally over time and I could reduce the HRT without too many problems in terms of return of symptoms in response by body's natural adjustment in my hormone levels in this two year period of time. This is what my Dr said should happen! Ha!

I really want to be off the HRT by 60, so I will keep trying. I don't know if I am right in assuming that as I still have symptoms on the low dose I should notice a reduction in the symptoms as my hormone levels change as time passes.

Any thoughts anyone? Has anyone tried this approach?
 
Dancinggirl for how long (after your miserable three years) were you on HRT for the “second” time before you came off again? I am interested because like you I had am almost immediate and severe return of loss of heat control and consequent insomnia this time when I reduced very gradually. So wonder whether a gradual reduction has any advantage over a VERY gradual one! I really hope that you continue to do OK and don't have a return of symptoms.

It is really difficult to decide what to do for the best as we are all so different.
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Dancinggirl

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Re: Coming off HRT and then......?
« Reply #13 on: January 03, 2014, 10:33:31 PM »

I went back on HRT for 4 and half years - I had a Mirena coil + Oestrogel over this time.
During the last year I had some episodes of stomach cramps that I thought was IBS but now the Mirena has been removed I realise it was this that was causing the cramps.  I think the Mirena had run out of progesterone and this may have caused the cramps. I have always had problems with progesterone part so i'm probably progesterone intolerant. If I go back on HRT I will try Utrogestan.
I know many women have meno symptoms for many years without HRT - it can take 6months, 2 years, 10 years and sometimes never for the body to adjust to no oestrogen - yes, it's a very depressing thought.
Some find a slow and gradual withdrawal from HRT makes it easier but i thought the main reason to come off it relatively slowly was because it caused less immediate bone loss  - but don't quote me on that one. I will be getting a bone density scan in about 6 months if I haven't been using full HRT as I'm seriously worried about my bones - my joints are far from good and the pain in my hips is already quite bad at the moment.
REading between the lines of your posts i think you are not ready to give up HRT and I don't think you should see 60 as a cut off. Why not keep going with a low dose till your 60/61 and then review? If you are healthy and it makes life better, why not carry on?  DG x
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lubylou

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Re: Coming off HRT and then......?
« Reply #14 on: January 05, 2014, 11:11:13 PM »

Thanks for the reply Dgirl and i really hope that you continue relatively symptom free and that your aching joints improve. Hopefully the bone scan will be Ok and you won't have any worries there.
Thanks you for your support
Lubylou
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