Has anyone made the decision to come off HRT and been OK?

[Trampauline]

I am on Oestrogel gel and Utrogestan tablets. I have been on HRT for four years now and turned 60 last May. I am starting to worry a bit about breast cancer, etc, and wondering about trying to come off it. Has anyone come off HRT and been able to manage without it?

My job is stressful though and I worry I might struggle with brain fog and lack of sleep if I stop.

When I started on hrt I was still getting regular-ish periods about every two months, but getting appalling headaches, bad sleep, and hot flushes that were more hot sweats, leaving me drenched from head to foot, and feeling dehydrated. Can't face going back to that.

Don’t come of Hrt If you don’t have to! It doesn’t cause BC. Read Oestrogen Matters by AVUM BLUMING.

I’m off it at present due to bleeding and it’s pure hell. I am far from okay and I am ridiculously irrational and irritable.

Your symptoms may well return at a faster pace than you want.

@Trampauline Do you know that there is no risk with the type of HRT you are taking, for 5 years (at least)?
This is in all the research.

I've been on HRT much longer- over 12 years.

I did try stopping for a month (there was a reason for that) and my sleep went to pot quite quickly. I also felt quite down.

Lack of sleep and night sweats were the reason I went onto it in the first place.

(My mum was still having these in her 80s.)

I think it's important to understand the risk is small- they are saying that it's around 1 extra case per 1000 women per year (and that's not based on Utrogestan as it's never included in the stats!)

It's also important to check the impact on your overall health. I have lowish bone density and know HRT is helping that, and also my risk of heart disease (on my mother's side.)

@Runaround50

I've heard AB speak on radio but not read the book. I feel the whole thing is so complicated, as the experts simply disagree with each other! I know his research was based on different products, like CEE (conjugated estrogen) and there is a discussion being had as to whether that is actually different/ safer! Which would be ironic as it has been made out to be more risky being made from horse urine. Having read his book, what's your opinion?

' did try stopping for a month (there was a reason for that) and my sleep went to pot quite quickly. I also felt quite down.'

Tbf though when starting HRT women are told it may take time to adjust so surely it will be the same in reverse? I'd guess it would take at least 3 months until things stabilise and a full assessment can be made.

Op I think you're very sensible to consider this after being on hrt for 4 yrs, we all know risks do increase the longer you're on it. Talk to your gp I think a very staggered reduction over a few weeks before stopping is usually how women do it. I have friends who have stopped without any problem, obviously we're all different but you may find it is straightforward.

You are quite right @JaniieJones.

I didn't plan to stop but did so for a reason I don't want to share here.

Again, for various personal reasons, it wasn't the right time in my life to experiment with no hrt and loss of sleep.

My risk factors for other conditions would increase without hrt. It's not as straightforward as perhaps you think.

And as @Runaround50 says, the risks are not agreed by experts. Avrun Bluming is a top US oncologist who does not believe estrogen causes BC. In fact that is what the UK experts also say- it's not the cause, it's one factor that may cause an existing cancer to grow faster than it would have.

It's a very personal choice as to what to do.

'Avrun Bluming is a top US oncologist who does not believe estrogen causes BC. In fact that is what the UK experts also say- it's not the cause, it's one factor that may cause an existing cancer to grow faster than it would have.'

It's really interesting all the different professional opnions isn't it. I know that is completely normal in science.

I wish we could fast forward 5yrs and see the data now that oestrogel and utrogestan are the gold standard and seem to have the lowest if no risk at all. Thr next generation of menopausal women will be in a great position evidence wise.

I came off it 3 years ago after 8 years. Been fine.

@JaniieJones The data you mention is already there. It's a research paper you can find online. Gel and Utrogestan show no risk of BC for the first 5 years. It's on the British Menopause Society website although it's not 'their ' research- they are quoting it.

There are also 3 other research studies which were done in France and Denmark- the French one is called EN3 - and if looked at a large group of women over many years. However, out of the 3 research trials, two showed no risk with Utrogestan and there was one that did show a risk, so more clarification is needed.

I know of 4 women who came off hrt after many years. Two had to have hysterectomies as their pelvic floors collapsed, one was okay but did find her symptoms returned for quite some time, the other went back on it in her 70s as her symptoms were so bad and she was willing to take the risks.

I came off Evorel Conti patches last year after a year on them. I am struggling with insomnia, anxiety and terrible night sweats. I am thinking of going back on HRT, these problems are really affecting my life and my work (and my relationship, my libido is nil). I am very fearful of BC but have discussed this on here not long ago and people were very mcuh supportive of going back onto HRT. I m going to talk to the doctor this coming week. Would people go back onto Evorel (worked v well for me) or ask for something else?

Just for balance- if you’re a healthy weight, don’t drink (or just drink smaller amounts) and exercise regularly you can very much help to mitigate the small additional risk of breast cancer that comes with more than five years of HRT use. (This is based on data over recent years but I believe, as above, the “oestrogen only” data may be a bit more contentious now).

www.menopausematters.co.uk/pdf/Understanding%20Risk%20of%20Breast%20Cancer.pdf

I suppose I won't know what it will be like coming off unless I try, for 3 months I reckon. Otherwise I'll be on it till I'm 80! I don't quite trust the GPs though. I feel I might be told I can go back on it if my symptoms are bad, only to be told the opposite after 3 months. I'm going to do some research reading and then speak to my GP. I'm sure I read somewhere recently about Utrogestan possibly being the culprit for BC, not oestrogen.

@theDudesmummy, I was taking Evorel Sequi until the supply problems, then switched to gel. I was fine with Evorel - the gel is a bit of a pain having to put it on every single night and wait for it to dry. The only problem I had with Evorel is that the progestogen phase made me feel weepy and depressed. The Utrogestan doesn't do that.

@RedLemon, that chart is reassuring, since I am not overweight and exercise a few times a week.

@JinglingHellsBells, "pelvic floors collapsed"

I suppose I won't know what it will be like coming off unless I try, for 3 months I reckon. Otherwise I'll be on it till I'm 80!

@Trampauline

Nick Panay (consultant) is online on youtube and podcasts saying he has women in their 90s on it, as does my consultant.

Interestingly, the mother of Dr Louise Newson is also on a podcast being interviewed by her, and says she has been on it for decades and is now close to 80.

Just for info, not to say it's the right thing for you, of course.

You are though well within the 'safe ' limit, as you still have a year to go before 5 years. So no need to rush into a decision.

I'm sure I read somewhere recently about Utrogestan possibly being the culprit for BC, not oestrogen.

I don't think you have read that.

So far, all the research shows that Utrogestan is by far the safest compared with Norethisterone and MPA.