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Author Topic: HRT stopped working? Could really use some advice :(  (Read 7073 times)

Gilla999

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HRT stopped working? Could really use some advice :(
« on: September 04, 2021, 07:11:08 AM »

Has anyone experienced HRT stopping working for them after a few months? As lots of you lovely ladies know, Lenzetto has been a life saver for me in getting rid of my night sweats and middle-of-the-night insomnia - it worked pretty much straight away since i started taking it in April. There have been the odd couple of days since where I've had problems but always identifiable why (eg after trying to lower my dose). I am still ovulating and having regular periods and take 100mg Utro vaginally cyclically.

However in the last two weeks my ultimate fear has happened and I've started having problems again out of nowhere - I have no idea why or what to do about it and would really appreciate anyone's experiences or thoughts. It started off a couple of weeks ago where I would wake at 4 but be able to get back to sleep and feel fine, but has gradually progressed over the last 5 or 6 days where it's just as it was before starting HRT - I am wide awake at 2am and not getting back to sleep. The night sweats are nowhere near as bad as they used to be but I'm definitely feeling more heat and anxiety. I'm on day 8 in my cycle.

I have absolutely no idea why this would be or what to do about it. It is the same pattern of symptoms that I was when my Estrogen was low prior to HRT, but I can't understand how I'd be fine for 4-5 months and then start having problems again. I've taken an estrogen blood test and waiting for the results, but I really can't deal with any more nights of being awake from 2am, it is soul destroying. I'm so reluctant to increase my Lenzetto (despite feeling that's maybe what I should do) because up until last month I was actually feeling like it might be slightly too high - the weight gain and constipation that I've had since starting it is severe and the thought of causing even more by raising my dose further is heartbreaking.

I wondered if anyone else has experienced HRT working for them for a few months and then having a return of symptoms, is that something normal?
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Mindfulmoomins

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Re: HRT stopped working? Could really use some advice :(
« Reply #1 on: September 04, 2021, 07:19:45 AM »

Hi Gilla,

I think my HRT stopped being so effective earlier this year. I changed to a patch in addition to gel.

It’s so heartbreaking, I agree, when you experience symptoms again, especially insomnia.

I have no advice except to hang in there and discuss it with you Gp once you get your blood test results. Blood tests can be a bit unreliable and your symptoms are what they will hopefully go on. It may be a small tweak can help.

I have been using the CALM app while trying to get things in balance plus Bach rescue remedy night spray. I know other people swear by probiotics or magnesium.

Take care of yourself, not sleeping is really tough xxx
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Gilla999

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Re: HRT stopped working? Could really use some advice :(
« Reply #2 on: September 04, 2021, 07:31:08 AM »

Thanks for the lovely reply MM, I really appreciate it. When you're not sleeping you feel so fragile, and it's a bit heartbreaking because I'd been doing SO well up until now.

I think my test results will be back on Monday but not sure I can go through another couple of nights like the last few, even though logically I probably should wait - although as you say, blood tests aren't always conclusive. The way I see it I have two options which are either:
1. Increase the Lenzetto by taping over the dispenser so I get half a spray more
2. I have some oestrogel which I've never used and could try adding in a small bit of that as easier to get smaller doses

The trouble is once I've increase the dose I find it impossible to reduce it again. For whatever reason my body seems to be addicted to Estrogen!

Can I ask if you experienced any issues with adding in a different product, or did you feel like you absorbed it just the same?
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Hopeful

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Re: HRT stopped working? Could really use some advice :(
« Reply #3 on: September 04, 2021, 08:17:43 AM »

Hi Gilla
I think a clue to part of your problem maybe in your comment ‘my ultimate fear’ as worrying about not sleeping will make your insomnia worse.
So I am sure the initial sleepless night may be due to your hormones but maybe the escalation maybe partly due to your worrying about it.
I speak from experience unfortunately.
Maybe if you could wait to discuss this with your doctor and in the meantime I would recommend looking at the insomnia coach (it is about CBT for insomnia)website for reassurance about insomnia and the fact that it will do you no harm.
Hope you get back on track soon
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Gilla999

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Re: HRT stopped working? Could really use some advice :(
« Reply #4 on: September 04, 2021, 08:39:56 AM »

Thanks for the reply  :)  I am aware of the insomnia coach and everything else under the sun connected with it  :)  This insomnia is different to anything I've ever experienced in the past - I have never had a problem with middle of the night wakening until it was accompanied by night sweats and happened cyclically. It took me a long time for me to be taken seriously in terms of it being connected to my hormones but thankfully when I eventually started Lenzetto it worked for me pretty much straight away. I know the difference in myself between "anxious" insomnia where I can't get to sleep if I've got an event the next day or something, and something that's caused by my hormones (2am waking with night sweats etc). The only reason I use the phrase "ultimate fear" is because I suffered  such a horrendous year before starting on HRT, and so the thought that that might return is obviously not pleasant!
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EllaAurora

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Re: HRT stopped working? Could really use some advice :(
« Reply #5 on: September 04, 2021, 09:12:11 AM »

Hi Gilla, sorry to hear this, and can totally relate. I've experienced similar kind of situation. Started HRT a year ago, 1 pump Estrogel and 200mg Utro cyclically. At this time I still had rather regular periods, except for 3 months break during previous summer. HRT worked pretty quickly and my hot flushes and insomnia disappeared within a few weeks. All was great until March this year, when I had a sudden worsening of symptoms a few days after I had my period. Things have not been the same afterwards and I'm still in process of finding the new balance.

My own explanation for this is that during the time of worsening symptoms, my own hormones declined in the background but not in a stable way, rather with lots of fluctuation. Due to the declining but fluctuating levels its been so difficult to find a balance and I often feel that oestrogen is either high, or low, though I'm keeping the dose steady. To add to that, I've also had issues of absorbing transdermal too quickly which hasn't helped (and which is why I may give Lenzetto a try next).

As you are peri and still have your own cycle, could it also be that your own hormones are starting to decline/fluctuate more in the background and due to this, the previous dose of Lenzetto is no longer working the same way?

Unfortunately I haven't found a miracle cure for the sleep issue as I'm pretty much on the same boat as you. Sleeping has been one of the main issues for me during recent months. I've had already some good periods, like a week ago when I had 7 consecutive nights of good sleep which was amazing. But during the past couple of nights, I've been again waking up at 2/3/4 which is horrible, so I can totally relate to your experience.

Tips you might want to try: valerian root (sometimes, though not always, helps me getting back to sleep), magnesium, restorative yoga (this helps me a lot to calm down mind and body), hot bath in the evening with lavender to relax. None of these unfortunately can fix the hormonal insomnia what you and I have -but I've found sometimes even marginal benefit is valuable.

Good that you will get the blood test results soon and will discuss with doctor to find a solution!
Hope you'll get some sleep this evening & get better soon! Keep us posted! xxx


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Gilla999

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Re: HRT stopped working? Could really use some advice :(
« Reply #6 on: September 04, 2021, 09:18:29 AM »

Ella I can relate to so much of what you say. There have been times in the last couple of months when I felt my E was too high (specifically around ovulation) - it caused me to feel manic and "amped up" and have broken sleep (nowhere near as bad as this though). And that's why I actually tried to reduce my Lenzetto a couple of times (but failed due to side effects). So to now be feeling like my E is suddenly too low this month has really thrown me!!! It is so reassuring to hear of someone else who has experienced similar things.

Yes I'm only 42 so very much still in Peri and that's the only thing I can think: that my own hormones are going a bit squiffy in the background. I seem to be so unbelievably sensitive to changes in Estrogen - prior to HRT it only had to be in the low range of normal for it to be causing me untold, horrendous symptoms.

Ella can I ask - when you say you were absorbing trans dermal too quickly, what made you think/feel that? I've read a few people here saying a similar thing.

Thanks for all the kind words, really appreciate it xx

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EllaAurora

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Re: HRT stopped working? Could really use some advice :(
« Reply #7 on: September 04, 2021, 09:51:22 AM »

Ella I can relate to so much of what you say. There have been times in the last couple of months when I felt my E was too high (specifically around ovulation) - it caused me to feel manic and "amped up" and have broken sleep (nowhere near as bad as this though). And that's why I actually tried to reduce my Lenzetto a couple of times (but failed due to side effects). So to now be feeling like my E is suddenly too low this month has really thrown me!!! It is so reassuring to hear of someone else who has experienced similar things.

Yes I'm only 42 so very much still in Peri and that's the only thing I can think: that my own hormones are going a bit squiffy in the background. I seem to be so unbelievably sensitive to changes in Estrogen - prior to HRT it only had to be in the low range of normal for it to be causing me untold, horrendous symptoms.

Ella can I ask - when you say you were absorbing trans dermal too quickly, what made you think/feel that? I've read a few people here saying a similar thing.

Thanks for all the kind words, really appreciate it xx

Sounds very familiar. I've also experienced feeling worse during the time of ovulation -already had that couple of years before started HRT. So I've concluded I'm super sensitive to oestrogen peaks as it sounds you are too. Before HRT always felt the best during the second half of cycle when I had progesterone in my system too, and the same has continued with HRT.

My absorption issues started when I tried to up the dose after symptoms returned in March. Often after applying the dose I felt really jittery, even panicky, hyperactive, some 1-2 hours after applying the gel. Then I had a few good hours, but already after some 12-14 hours after applying the dose, started feeling it 'wear off' and return of the symptoms. I cannot know for sure it was the issue of fast absorption but that's certainly how it felt.

Due to this, I switched to patch early summer, hoping it would give more stable dose. Unfortunately, had the same issue and felt the 'rush' after applying new patch, and already on day 2 started feeling it wearing off. So it was the same roller coaster and I felt even worse, so decided to come off patch and give Estrogel another try. Now I'm back with gel for the time being and seem to tolerate it better, so I'm no longer getting those bad rushes for which I'm truly thankful, but I still haven't found a dose with which I'd feel good and I continue feeling insomnia and anxiety. Due to this I'm considering to try Lenzetto or oral, but my worry is actually that maybe its not the product, maybe its just me and my fluctuating system that is causing all these symptoms and until that will settle, I'm not sure if a permanent balance can be found  ::) Ideally I'd have a regime which would stop my own cycle, but I'm not sure such thing exists, other than the pill, but I'm anyway too old for it so don't think it would be an option.

I don't know if there is anything that can be done to the hormonal sensitivity which you describe and I know exactly what you mean! I can feel the slightest shift in my hormones and I feel its only become worse over the past moths, probably due to constant self observation.  ::)
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Gilla999

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Re: HRT stopped working? Could really use some advice :(
« Reply #8 on: September 04, 2021, 10:09:35 AM »

I hear you on the self observation! But then I also think that it's the observation and determination to figure this thing out when I've had absolutely zero help from doctors that has kept me alive, because if I hadn't got myself onto HRT I honestly don't know where I'd be right now. So I try not to give myself too hard a time  ;)

It certainly does sound like absorption issues for you doesn't it. I initially tried Estradot before Lenzetto but couldn't get on with it - even though the dose was lower than Lenzetto the side effects were higher for me. Lenzetto really has been a miracle product for me... until now! The big drawback is that you can't do smaller doses. I've never experienced that absorption thing with Lenzetto though, it feels very steady.

One thing I would say is that before starting Lenzetto I also had the approach of wanting to "switch my own cycle off" which is why I tried two contraceptive pills before it. Everyone is different, but my experience was that it did not work. Yes it might have stopped ovulation but it definitely did not stop my own hormones from going crazy underneath. I even had a series of hormone tests while on them that proved that my own hormones were fluctuating like mad underneath (I took 6 packs back to back, no breaks). When I found the Lenzetto and felt like I was working "with" my own cycle rather than trying to shut it down, I seemed to get on much better. But you're right, then we are still vulnerable to our own fluctuations I guess.

Now I just need to figure out whether to try increasing a bit or leaving it as it is and praying it passes. Such a tough call  :-\
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Floo36

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Re: HRT stopped working? Could really use some advice :(
« Reply #9 on: September 04, 2021, 12:22:48 PM »

Just a thought, I’ve learnt that my fluctuations are what cause me to be jittery, hyper, wobbly, shaky, bag of nerves like I am today, i also have insomnia, I don’t sleep at all without help.  I feel like I’m riding a bike over cobbles! I used to blame the HRT but it wasn’t it is my own hormones, it’s taken me 2 1/2 years though to work out that it wasn’t the HRT.  My ovaries just won’t give up.  My menopause doctor said the fluctuations can sometimes be much worse than low Estrogen. 
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EllaAurora

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Re: HRT stopped working? Could really use some advice :(
« Reply #10 on: September 04, 2021, 01:00:07 PM »

I hear you on the self observation! But then I also think that it's the observation and determination to figure this thing out when I've had absolutely zero help from doctors that has kept me alive, because if I hadn't got myself onto HRT I honestly don't know where I'd be right now. So I try not to give myself too hard a time  ;)

It certainly does sound like absorption issues for you doesn't it. I initially tried Estradot before Lenzetto but couldn't get on with it - even though the dose was lower than Lenzetto the side effects were higher for me. Lenzetto really has been a miracle product for me... until now! The big drawback is that you can't do smaller doses. I've never experienced that absorption thing with Lenzetto though, it feels very steady.

One thing I would say is that before starting Lenzetto I also had the approach of wanting to "switch my own cycle off" which is why I tried two contraceptive pills before it. Everyone is different, but my experience was that it did not work. Yes it might have stopped ovulation but it definitely did not stop my own hormones from going crazy underneath. I even had a series of hormone tests while on them that proved that my own hormones were fluctuating like mad underneath (I took 6 packs back to back, no breaks). When I found the Lenzetto and felt like I was working "with" my own cycle rather than trying to shut it down, I seemed to get on much better. But you're right, then we are still vulnerable to our own fluctuations I guess.

Now I just need to figure out whether to try increasing a bit or leaving it as it is and praying it passes. Such a tough call  :-\

Good point on self-observation, you're right it does have also positive side and has kept me relentlessly seeking for a solution. I also believe once I'm going towards a better place I will be very quick to notice it based on my body and mind signals. I don't understand though why it took me so long to realise I'm peri. I only figured it last year when I started getting hot flushes and worsening insomnia, but looking back now I must have been peri already for at least 5 years before, if not even more. Not sure it would have made any difference if I'd started HRT earlier, but probably the past few years would have been easier to manage as I already had lots of symptoms, just not yet the classical hot flushes.

Thanks for sharing your experience with the pills - probably I'd have exactly the same. I've read that it is also possible to 'shut down ovaries' with some medication, but that also sounds like a really rough path, so probably better just trying to find a way to cope with the situation and continue tweaking the dose and mode of HRT.

May I ask, what were the symptoms you experienced with patch that made you switch to Lenzetto? And have you tried gel before as well?
I'm considering maybe to give Lenzetto a try, though like said not sure the issue really is the product, but more what's happening in my body.

« Last Edit: September 04, 2021, 01:02:38 PM by EllaAurora »
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EllaAurora

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Re: HRT stopped working? Could really use some advice :(
« Reply #11 on: September 04, 2021, 01:18:00 PM »

Just a thought, I’ve learnt that my fluctuations are what cause me to be jittery, hyper, wobbly, shaky, bag of nerves like I am today, i also have insomnia, I don’t sleep at all without help.  I feel like I’m riding a bike over cobbles! I used to blame the HRT but it wasn’t it is my own hormones, it’s taken me 2 1/2 years though to work out that it wasn’t the HRT.  My ovaries just won’t give up.  My menopause doctor said the fluctuations can sometimes be much worse than low Estrogen.

I think you have a point Floo, and I'm increasingly thinking in the same direction. At some point I suppose I have to just accept that there may be no such HRT that would fix it all, at least until the underlying fluctuations stabilise. Before that though I'd like to give Lenzetto a try, and if that does not work, try oral. I was just talking with one lady older than me who simply couldn't find a balance with any transdermal, but moving to tablets finally helped her.

The question is if HRT finally does not solve the problems, what to do then? That really worries me. I suppose the approach would have to be to treat symptoms separately, like sleeping pill for insomnia, or AD for anxiety... just that it feels so wrong since I know that all the symptoms are hormonal.

How are you coping with the situation Floo? I remember from another thread that you are on high does oestrogen -how are you getting on with that?
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Gilla999

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Re: HRT stopped working? Could really use some advice :(
« Reply #12 on: September 04, 2021, 02:01:58 PM »

I admittedly only tried Estradot 25 for a week but it caused really painful, swollen boobs - which is my classic traffic light for high estrogen - and it didn't stop my night sweats and insomnia. With the Lenzetto I had no symptoms (despite it being a higher dose of estrogen?!) and it worked almost immediately. However, I have always wondered whether it was as much to do with the time of month that I started the Estradot as much as anything else. My own experience has been that when I've tried to add or remove either E or P at a time that works against what is happening in your natural cycle, it has caused me to be extremely symptomatic. For example I started the Estradot a week before my period when my own estrogen would have been dropping, so I do think it's possible that's why I didn't get on with it. Then again I have read a lot of Lenzetto success stories so who knows.

I've decided to bite the bullet and added in half a pump of oestrogel today, which I think is the equivalent to a quarter of a spray of Lenzetto. No idea if I'm doing the right thing - it's such a russian roulette. If my estrogen blood test result comes back on Monday as the same that it was at the same time 2 months ago when I was symptom free, then I know this episode has nothing to do with E and I'll stop taking the additional (and hope I haven't destabilised myself further with two days of using it!).

If there is one thing I have learnt through all of this it is that I am SUPER sensitive to changes in Estrogen. I was only in the low end of normal pre HRT and I was horrendously symptomatic, literally at death's door. So perhaps my own E dipping slightly in the background has just set off this blip. Oh to be one of those who sails through the menopause  :'(
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EllaAurora

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Re: HRT stopped working? Could really use some advice :(
« Reply #13 on: September 04, 2021, 02:28:53 PM »

Good luck with the trial on gel! Hope it helps!

I can totally relate to the super sensitivity part. For me too, it seems to be especially the fluctuations, more than the levels per se, that cause all the symptoms. Interestingly, before starting HRT I had bloods taken and my E was very, very low, but I wasn't feeling that bad at all. Probably at that point it was steady, even if low. Later on have had bloods taken couple times and every time I've felt much worse even though the readings have been pretty OK. Must be the fluctuations as otherwise it doesn't make any sense.
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sheila99

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Re: HRT stopped working? Could really use some advice :(
« Reply #14 on: September 04, 2021, 03:22:49 PM »

I think adding half a pump of oestrogel is a sensible move. It's normal to need more as your ovaries pack up, I started on 2 pumps and have have had to increase twice over the last 3 years as symptoms returned. Peri is difficult because it often isn't easy to distinguish between the effects of hrt and your own peaks and troughs. Insomnia and anxiety were my worst symptoms so I can sympathise, you're guaranteed to feel awful when you can't sleep. Do you keep a diary? It would be useful to know if it's cyclical. My sleep gets worse towards the end of the utro phase (even though it's still remarkably good at making me dopey in the day!).
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