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[Pippa52]

Hi lovely ladies
I am looking for some input please from those who have experienced cutting down on HRT.  I attempted after over 20 years on transdermal oestrogen only therapy to start to cut down on my HRT.  I did it reasonably slowly but after a short while began to be hit with a myriad of really bad symptoms.  They ranged from severe episodes of very fast heartbeats (was admitted twice to hospital A&E with them) the worst anxiety and panic attacks I have ever experienced, insomnia and cold sweats and shivering, light headedness and incredible weakness and fatigue.  I found it really hard to understand just how  and why how severe these symptoms were and sought medical advice at the time and also started on a course of CBT for the awful anxiety which I could barely cope with. I was prescribed 4 valium tablets (yest it was that bad!) which I actually resisted taking but I was really struggling.  I would be so grateful for any input as to whether any other of you lovely ladies have experienced anything similar?  I truly could not cope with them anymore so sought advice from both my GP and a Menopause consultant and have since started on Lenzetto spray which has made a world of difference.  I would be so grateful to hear from any ladies who have experienced any similar symptoms or indeed how they coped with stopping and coming off HRT.  Thanks so much in advance.xx

[sheila99]

I've tried to reduce three times. Each time I've had a return of symptoms and gone back up again. I don't think there's anything you can do about, either your body thinks it will be OK without oestrogen or it doesn't. The good news is that it's been accepted by the nhs and there is no longer an age limit for hrt.

[Hopeful]

Hi pippa52
I too have terrible symptoms after stopping HRT. I stopped June 2020, I was using everol conti  1/2 a patch. Everything was fine for 2 months but the heart palpatations and terrible anxiety and insomnia struck. I also visited A&E and did take the Valium a couple of times. I had ECG and echo all fine. Am now on week 6 of femseven conti but unfortunately not much improvement yet. Living in hope

[Gilla999]

Just to add Pippa, I had to stop the taping up of my Lenzetto after only a week because I couldn't take even reducing from 2 to 1.75 sprays. The first time dropping from 2 to 1 sprays I had horrendous anxiety and insomnia like you mention - I felt really very ill - and this time after about 4 days I just felt totally exhausted and unable to do anything except lie on the sofa, but it was still unpleasant enough for me to think I can't be bothered with this and just went back up to 2 sprays today.

My body loves Estrogen and can't tolerate even the smallest reduction - it does make me wonder what will happen further into perimenopause when my own natural estrogen drops as I'm only 42    I know they say you're supposed to lower your dose as your body doesn't need it anymore, but I can only see that I'd need to continue to increase not decrease it? As Sheila says, either you're one of those people who really need it or you aren't. Following this thread with interest xx

[Pippa52]

Gilla999
If it is any consolation I am 68 and had a hysterectomy at age 30 and ovaries out at 42.  I no way intend to ever stop or cut down  the HRT again it made me SO ill.  The Menopause consultant said that oestrogen only HRT is now known to not pose any increased risk of breast cancer plus it protects up to 50% against heart attack and strokes and of course protects against osteoporosis. She also said everybody needs different amounts of HRT according to their individual needs and the key is control of the symptoms is what matters not so much how much or how little HRT needed.  If your body needs 2 sprays then that's fine and you are young as well so your body would need more that makes sense. Definitely getting the right dose for you is the key.  I was also told it can take up to 6 weeks sometimes longer for the body to adjust to the HRT dose.  Hope so much you are starting to feel a bit better.  I did notice how quickly the levels went up on Lenzetto it does seem to be absorbed really really well xx

[Pippa52]

HI Hbhigg
Thanks so much for your reply.  I am so sorry that you too suffered such awful symptoms. I had various heart tests too - all so scary the fast heart beats really freaked me out and the anxiety and panic was nothing like I have ever faced before.  Horrendous.  I'm definitely staying on HRT for good now!! Thanks again so much for replying it is actually really comforting to hear I am not alone although so sad to hear you were so unwell too .  I'm so sorry you are still not feeling good.  What does your Doctor advise? xxx

[Pippa52]

Hi Sheila 999

So sorry to hear you too have suffered horrible symptoms.  They really are nasty.  I think you are right we clearly need the HRT! xx

[EllaAurora]

Hi lovely ladies
I am looking for some input please from those who have experienced cutting down on HRT.  I attempted after over 20 years on transdermal oestrogen only therapy to start to cut down on my HRT.  I did it reasonably slowly but after a short while began to be hit with a myriad of really bad symptoms.  They ranged from severe episodes of very fast heartbeats (was admitted twice to hospital A&E with them) the worst anxiety and panic attacks I have ever experienced, insomnia and cold sweats and shivering, light headedness and incredible weakness and fatigue.  I found it really hard to understand just how  and why how severe these symptoms were and sought medical advice at the time and also started on a course of CBT for the awful anxiety which I could barely cope with. I was prescribed 4 valium tablets (yest it was that bad!) which I actually resisted taking but I was really struggling.  I would be so grateful for any input as to whether any other of you lovely ladies have experienced anything similar?  I truly could not cope with them anymore so sought advice from both my GP and a Menopause consultant and have since started on Lenzetto spray which has made a world of difference.  I would be so grateful to hear from any ladies who have experienced any similar symptoms or indeed how they coped with stopping and coming off HRT.  Thanks so much in advance.xx

Hi Pippa,
I'm afraid I can't help with the question of coming off HRT but just wanted to sympathise with your experience and say that I know exactly what you mean! I've experienced the same over the past couple of months. I was not attempting to come off HRT (only started last autumn as I'm peri), but apparently my own oestrogen radically decreased in the background in March and then all the symptoms you describe started almost overnight. Heart tachycardia and palpitations, insomnia (some nights with NO sleep), diarrhoea, zero appetite, and the absolute worst of them all: anxiety and panic. I could have never imagined how horrible and lost one can feel and how it can happen so quickly.  I'm still on the journey of recovering from this and to be honest, feel like I almost got traumatised by these experiences, it was so horrible. Now trying to find a new balance and the right amount of estrogen. Not yet there, but some of the symptoms have eased so I'm hoping I'm going to the right direction and that once I find the new balance, I'll never have to consider coming off.

Good to hear you are feeling better with Lenzetto! Take care xxx

[Gilla999]

Ella I just wanted to sympathise - you could have been describing my exact experience when all of this first started for me in 2019. Severe insomnia caused by a sharp drop in hormones got me into an anxiety/insomnia loop that I couldn't get out of. I was in the depths of hell and had to put on some hard-core anti medication. Eventually I realised my hormones were to blame for it all and thankfully HRT has helped me so much. I too felt totally traumatised by what happened - I thought I'd always feel that way as a year later I was still struggling mentally with what had happened, but over 2 years on and I'm in such a better place in relation to it. I just wanted to say I'm sure the same will go for you too and I hope you're close to getting the right balance back xx

[Pippa52]

Hi EllaAurora and Gilla999
Oh wow do I sympathise with both of you.  I truly just did not know how to cope with the anxiety and panic it really was off the scale. Also the COLD (not hot!) sweats which really threw me being that they most definitely were not hot flushes  worse at night and sleeping became practically non existent I got to absolutely dread the nights!! I was very concerned because at the same time I had received the first and then later the second covid vaccines and thought it was them causing all the symptoms and so did my GP.  Hence I am very concerned about having any type of booster in the future hence my question on here to see if any other ladies had suffered the same symptoms with hormone or HRT issues.  Although I am so sorry to hear what you have both had to suffer it does make me realise what I went through is far more likely to be hormones.  Like you it really traumatised me - I have had some panic attacks in the past but nothing on this scale and it's taken me a long time to start to feel confident or well enough to go out and about again.  It started in January and only in the last month have things started to improve.  I thank my lucky stars for Lenzetto coming on the market over here and being available on the NHS when it did.  I hope so much both of you continue to improve and want to thank you so much for posting on this thread it has really helped me so much xxxx

[Flan747]

So sorry to read all these similar stories to my own! It’s all a nightmare isn’t it!
Pippa- interesting to read another good review for Lenzetto! It’s the only one I haven’t tried so hoping at my Newson appt in September this may be mentioned. My only concern obviously is changing  again and what symptoms may appear! Good luck to everyone

[Hopeful]

HI Hbhigg
Thanks so much for your reply.  I am so sorry that you too suffered such awful symptoms. I had various heart tests too - all so scary the fast heart beats really freaked me out and the anxiety and panic was nothing like I have ever faced before.  Horrendous.  I'm definitely staying on HRT for good now!! Thanks again so much for replying it is actually really comforting to hear I am not alone although so sad to hear you were so unwell too .  I'm so sorry you are still not feeling good.  What does your Doctor advise? xxx

Hi pippa52
I haven’t spoken to my doctor since restarting the HRT I am trying to leave it the 3 months. It is complicated by the fact I had a tick bite at the same time and am on antibiotics for that in case the tiredness is caused by Lyme.

[Pippa52]

Flan747
So sorry to hear you have suffered too.  To be honest I don't think I was absorbing Oestrogel well for a very long time anyway so cutting down on it was then the final straw.  I have been amazed how quickly Lenzetto kicked in as I was really worried about changing over as I am uber sensitive to any drug let alone changing over.  It does seem to absorb really fast and I have now noticed that I don't get that feeling of oestrogen running out at the end of the day either.  I hope so much you can get to try it - I truly thought I was in for months of feeling grotty on a changeover but after only just under 3 weeks I am already starting to feel like a different person.  Do let me know how you get on if you do change over to it. xxxxx

[Pippa52]

Hbhigg

Oh goodness I am so so sorry to hear about you having Lyme disease.  I know that can make people feel so very ill.  I have dogs who I treat regularly to prevent them getting bitten by tics so I know what nasty diseases they can cause.  I do hope so much you are feeling a bit better now. xxxx

[EllaAurora]

Ella I just wanted to sympathise - you could have been describing my exact experience when all of this first started for me in 2019. Severe insomnia caused by a sharp drop in hormones got me into an anxiety/insomnia loop that I couldn't get out of. I was in the depths of hell and had to put on some hard-core anti medication. Eventually I realised my hormones were to blame for it all and thankfully HRT has helped me so much. I too felt totally traumatised by what happened - I thought I'd always feel that way as a year later I was still struggling mentally with what had happened, but over 2 years on and I'm in such a better place in relation to it. I just wanted to say I'm sure the same will go for you too and I hope you're close to getting the right balance back xx

Hi Gilla, thanks for your kind message and happy to hear you are feeling much better now!!
It does take time to stabilise, even if the symptoms start subsiding. I feel I will need time to mentally digest this whole experience and also to stop constantly assessing my feelings/symptoms/moods etc. At the moment I think I'm actually already feeling better symptom wise, but am still in the vicious circle of all the time focusing on myself ('how do I feel today, am I better or worse than yesterday etc'), which is so annoying and not helping the recovery. I hope I'll soon get to a point where the day is no longer focused on the menopause symptoms but on other people, fun, work and just the normal life.
Hope you continue feeling well and thanks again for support! <3