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[Stillsearching]

At the beginning of September  I decided to try coming off HRT. Reasons being I have been on HRT for 5 years (I'm 59 now) and have been bleeding for nearly a year since having a Mirena taken out and trying different pills. One of my GP's won't prescribe HRT as he doesn't believe there are any benefits but there are risks. The other will prescribe but I had the feeling he was just humouring me not putting his mind to what might really help. I'm also looking for a new GP with more interest in women's health.

My main reasons for starting HRT were 1) night sweats, hot and freezing cold, 2) painful and stiff joints, particularly my hands which became really weak, 3) Incontinence where even walking briskly was a problem and 4) concerns about osteoporosis which my mum and grandma both had.

I couldn't find any info about giving up other than symptoms would probably return but no time scale. Perhaps everyone is different?

Before giving up I was already taking 1500mg of Glucosamine and 300mg of 5 HTP. Even though there are conflicting reports about the efficacy of supplements I thought I'd rather take than not so I've started a menopause multi vitamin. Then reading up about the particular symptoms that concern me, blinding myself with science,  I decided that the multi vitamin didn't have enough so I've added  a vitamin E  capsule, Vitamin C chewable tablet and an omega E capsule. It does look a bit over the top in the morning but I can always cut back later. I've bought enough of each to last 3 months.

For the first couple of days I bled quite heavily but this gradually reduced and after 10 days stopped all together. After 4 days I was jumping out of bed in the morning full of energy and this has more or less continued. After 12 days I started to get night sweats, 5 the first night but only 3 last night, not followed by the freezing so that's an improvement. I realised yesterday that my back and hips no longer ache. So far my other joints feel fine and I'm still jogging with no 'accidents'.

I'll be able to monitor most of the previous symptoms to see if they return, the only thing I won't know is how healthy my bones are. I console myself that my lifestyle is not the same as my mum and grandma. They never did exercise as it wasn't done years ago, I don't drink tea or coffee which they did and I drink a lot more milk than they did.

I've just ordered some sage supplements to see if that will help with the night sweats and will post again at the end of the first month if anyone is interested.

[Dancinggirl]

Hi Stillsearching
Good thread to start - any ladies who worry about life after HRT need to hear our experiences.

I'm 60 and stopped systemic HRT about 3 months ago.  I took HRT for basically the same reasons as you. Though I have stopped systemic HRT I am still using Vagifem (local oestrogen) 2-3 times a week and if you aren't using this then I strongly recommend you do as it is helpful for problems with, not just VA, but also the bladder!!!!!

Like you, my flushes or rather my inability to control my body thermostat, returned within 2 weeks of stopping HRT but I do feel generally better in myself.  My sleep is a bit erratic - some nights I simply can't seem to get to sleep??!!!

I have been taking Omega 3 (I now take Krill oil) for many years as I know it helps with joints, heart etc.  I am taking a supplement with a combo of Calcium, Magnesium and zinc as osteoporosis really worries me. Like you, I did a good review of my diet: I believed my diet was good but realised through research that I was low on certain elements that might benefit from some supplementation. 
Vitamin D - terribly important in winter.  My brother-in-law, who is a leading gastroenterologist and very sceptical about all kinds of supplements and complementary medicines, actually recommends that everyone should take Vitamin D through the winter and even the summer if you don't get enough sunshine.

I walk a lot.

The one thing I don't like is the irritability I get without HRT - I have started taking St John's Wort (which one shouldn't take with HRT) and now, 2 months on, feel this is keeping me on more of an even keel?!!!!

It is well known that HRT used for 5 years can and does often reduce our chance of getting osteoporosis too early so with continued care with the diet (enough calcium, Vit D and Magnesium) and appropriate exercise like brisk walking we will hopefully have a far better long term outcome.

I do think one needs to come off HRT for the right reasons and at a time when we can approach the changes in a positive way.  If life is stressful then it can be so tough - I know because I had 3 years without HRT in my early 50s and felt dreadful most of the time.

Thank you for sharing your experience - hopefully more ladies will share as well.
Keep us posted.  Dg xxxx

[CLKD]

Your GP isn't there to not prescribe.  If he feels there are risks then he isn't up to date and is therefore, IMHO, not fit to practice.   I would be reporting his attitude to the GMC.  Ask your other GP to refer you to a gynae with an interest in menopause matters or to a menopause clinic? 


ALL medications, food and activities are not without risk!  Wonder how his wife would react 

Browse round.  Make Notes.  Ask!

[Mary G]

Stillsearching, I agree with CLKD.  From reading your post, I can't help feeling that you have not had particularly good advice or support when it comes to the menopause and HRT.  So often, women do not manage to get the right type of HRT at the right dose, they then become disillusioned because they don't feel as good as their either could or should and then they start to question if it is worth it.

If you stop using HRT and feel OK then fine, but if you don't and the symptoms start to creep back, I would seek advice with a menopause specialist.  Don't suffer menopause symptoms when you don't have to.

[Dancinggirl]

CKLD and MaryG - if you reread StillSearching's post she has actually made the decision to take a break from HRT because she has tried various HRTs and it has resulted in problems with bleeding.  These problems with bleeding and spotting are the reason I have also decided to take a break from HRT.
For me, Utrogestan seems to have triggered these problems - I tried using it in all sorts of ways -  a lower dose for fewer days on a slightly longer cycle (clearly this was not a good idea!!! ), full licensed dose regime and continuously but Utro caused me problems in every way, particularly when I used it vaginally.  I have tried many different progesterones and never had so many problems. I wanted Utrogestan to work as at my age (60) the BC risks are lower with Utro - but I was unlucky and it wasn't right for me.
I was also pleased to read in StillSearching's post that she found her energy levels were improved when she came off HRT!!! I have to say I'm feeling generally better as well!!!
I think the message from StillSearching is a positive one - she seems to be coping quite well and pursuing various options. Taking a break from HRT is a very good idea - if for no other reason than to reassess whether HRT is really the best way forward. If in a couple of months either of us feel life without HRT is too tough then I will certainly be back to my gynae for advice and StillSearching has said she is already seeking different professional advice - her main concern is to do with her bones and it sounds to me as though she is doing all the right things to support her bone health.  She could always go back to the Mirena with separate oestrogen.

HRT really does have to be about the benefits versus the side effects.   DG x

[CLKD]

    

I was making comment about the apparent lack of care and consideration by the GP.  A GP is not there to offer his views, he is there to listen, treat and prescribe when necessary.  When I went to see the Family Doctor at the age of 15 because of [cropping - blasted text]: crippling : period pains, I asked for The Pill.  His first response was "What would you do if I was a Catholic and refused to prescribe it?" …….. my reply was: "You should not be putting your personal beliefs in the way of giving me The Pill!" ….. I got my prescription and changed my GP!

GPs will use various excuses as we see on MM not to prescribe, the 'risk' factor being one of the main ones.  With detriment to patients, as I don't suppose it is simply ladies who get fobbed off with cheaper options non-related to conditions that were discussed with the Doctor ……….. as well as if StillSearching has been bleeding for this length of time then the GP should have referred her to a Specialist!!!!! GPs are that - general practitioners.  But of course they don't want to refer as it comes out of the budget.

Which part of my response didn't you get?  I haven't taken HRT except for VA so generally leave those suggestions to those that have used it, but it makes me ANGRY when GPs fob patients off    in the first instance it is lack of care and at worst it is negligent.

[Annemaria]

Hi Ladies,
I also have chosen to come off hrt 6 weeks ago after 7 years. I'm 58. I had prepared myself for an onslaught of undesirables in the weeks to follow. I suffered terribly when meno reared it's ugly head. I also had to cope with nasty pms in my 30 and 40s. I was treated with Prozac and it actually worked. I exchanged Prozac for continuous HRT at 51.

Six weeks on now and I can honestly say that I have not yet (crossing fingers) had any sign of the nasties. I also have increased energy. One thing I'm dealing with though is vaginal atrophy. I'm using Vagifem a week in now and there seems to be an improvement. I asked my gyn if taking hrt all these years is just delaying the inevitable. She said, "some yes, many not".
I'm going to give it a couple of months see where this goes. Both my gp and gyn are pro hrt as they are both on it and don't plan to quit. I'm aiming to be hrt free.

Annemarie

[CLKD]

  for that positive response.  Fortunately I've not needed HRT apart from for VA treatment.  I haven't yet worked out why I haven't required it ……… 

[Mary G]

CLKD, I too was referring to the fact that Stillsearching was left bleeding for nearly a year without being specifically referred to a gynaecologist - what kind of treatment is that?

Nobody is saying every woman has to take HRT but do make sure you get the right advice from a specialist and don't suffer unnecessarily.  If someone has constant bleeding, it needs to be sorted out and as CLKD says, a GP's personal point of view and beliefs should not come into it.

[Hurdity]

Notwithstanding any previous comments - taking HRT for 5 years is not a reason to come off it though Still searching..... and if your doctor suggested this to you (that you should come off because you have been on it for 5 years) when you expressed concern about bleeding then this is absolutely not on as others have said and we all on here agree on that.

If it was your freely taken decision because of the bleeding - then fair enough, but equally there are ways to deal with this. May I ask why you did not have another Mirena put in (if it suited you) - so that you could then continue to add oestrogen at your ideal dose and not have bleeding but enjoy protection of the womb? I would suggest that this is still an option. I was offered one at 60 when I had to have a hysteroscopy but I declined - preferring instead to opt for a long cycle and progesterone every 6-8 weeks or so.

Those of us approaching and beyond 60 ( I'm 63), and who still have a womb, are in a very different position from you younger women on HRT - because we have to endure the problems with progestogens and bleeding or not for years and years so a decision needs to be made at some point if and when to stop - so I respect your decisions and Dancinggirl since at some point one says enough is enough. I haven't reached that point yet because so far it's all working OK with long cycle and bleed (and I enjoy a full and active life and still working part-time) - although every time I get to the prog phase and then the bleed I think - how much longer am I prepared to put up with this? Or "what will I feel when I start to come off HRT?" There is no answer but if you're in your 40's or 50's - there is no contest - just be patient and find the right preparation!

CLKD - I have said before that the reason you did not suffer with flushes, sweats or depression is because you have been on various anti-depressant medication for a long time. Several of the AD's prevent flushes and sweats ( or cure them) so you may well not have experienced them because of this. This is why VA took you by surprise because those who do get flushes and sweats are prepared for other symptoms too, but unfortunately it creeps up on many of us! You won't have had extremes of low mood (due to menopause anyway) because of the medication you are on to alleviate this - which you have told us you have been taking for many years. Depending on when your periods stopped - if before the average age of menopause you might like to request a bone scan just to check all is OK, or if you have osteoporosis in the family?

Talking of osteoporosis StillSearching - if you have a genetic predisposition to this then that is a very good reason to try to continue with HRT for as long as you can - even though supplements (as Dancinggirl has mentioned) and walking etc may help to some extent.

Hurdity x

[CLKD]

However: why do patients wait until seeking further advice  ………. I found when very ill that asking for help was difficult as I feared rejection.  I would suggest taking someone along to push my points over and also to take notes about any replies. 

MaryG: surely any long-term bleed needs investigation  ……..

I have noted on here many times that ladies are totally un-prepared for this stage of Life, even those who have flushes etc. have been un-prepared for other symptoms …….. particularly VA.  We have heard, usually whispered conversations between Mum and Aunts/neighbours, during the years about hot sweats but other problems are often not talked about or discussed  .  I have had regular scans re osteoporosis.

[Stillsearching]

Thank you for the responses and the advice about Vagifem. After having the Mirena coil removed my gp prescribed Climagest on which I had heavy bleeding again which hadn't been explained to me. After 3 months I asked for something else and was given Femoston conti 1mg/5mg plus 2mg Climaval. Bleeding and spotting started again at random stages of the month. GP said it's because the progesterone isn't enough but there is nothing he can prescribe. I suggested taking down the Climaval so we dropped it to 1mg . No change so we took the extra Climaval out and I took the Femoston Conti for 2 months before deciding I'd had enough. I wanted to stop the HRT to see if the bleeding stopped. If it hadn't then I would have asked for a referral.


I have had bouts of depression all my life and years ago was prescribed anti depressants which made me feel awful so I didn't take them for long. I had post natal depression after both children and after the second one was persuaded to visit my previous gp by the health visitor. GP leaned back in his chair and said "We all have problems what do you want me to do about it?" It took me 30 years to ask for help again prompted by the menopause. I had SSRIs then counselling and then found 5HTP which has made a huge difference. I'm feeling so much better in myself now than I was 5 years ago when I started on HRT.

I have enough supplements to last 3 months then I'll make a decision.

p.s. Hurdity posted while I was replying. My GP doesn't fit the mirena and the local family planning clinic won't fit it for HRT. I have found another surgery in the next village which has 3 female doctors, one with an interest in women's health. I'm going to ring them on Monday and one of the things I will ask about is the coil because that's definitely what I'll do if I go back on it.

[CLKD]

Thanks for the update!  Sometimes GPs should be struck off instantly  .  Several years ago when severely depressed I visited a Locum for help and was told 'you aren't depressed, come back in 14 days'.  I went back to my own GP 3 days later and he knew by the way I walked into the Surgery that I was in trouble.

Your GP could refer you to a Gynae for discussion about the Mirena, however, if you have decided to speak to another Surgery, Good On You! let us know how you get on

Several ladies have talked about 5HTP here ……. so pleased that you are feeling better! 

[Stillsearching]

Thanks for the flowers CLKD 

On one of my 4 wake ups last night I suddenly remembered the episode of Doc Martin where Celia Imrie's character was using 'special cream' and her husband and boyfriend ended up with man boobs. It seemed vitally important to think about at 4 o'clock this morning.

[Dancinggirl]

StillSearching - isn't it strange what the mind focuses on in the middle of the night

Hope you continue to do well without HRT.  I'm sure a new GP is a good idea, we all need a GP who is supportive - some advice about how to help your bones seems to be your primary concern and a bone scan might help to alleviate your worries.

We will both see whether life without HRT is OK - OR - whether it's worth putting up with the various hassles that HRT can bring.  DG xx