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[Gilla999]

After 8 weeks of hell with a severe flare up of my autoimmune condition which correlates with my Estrogen levels raising, I have somehow managed to get down from 4 sprays of Lenzetto to 1.5 sprays within 4 weeks and I am planning to stop entirely today, which are words I never, ever thought I would say!

In December I had a huge surge of my natural Estrogen (as is usual in Peri) and the combination of this + my 4 sprays sent me into a nightmare - gut-wrenching anxiety/doom/dread, very severe palpitations and racing heart, crippling insomnia of not being able to get to sleep as feeling so wired and stimulated and on edge, as well as a reoccurence of the autoimmune related intense itchy/buzzy/****ly skin sensations and urticaria. I'm pretty much bed ridden, not able to work, and now now getting paid / can't pay the mortgage as a result of all this.

I'm very realistic that when my own Estrogen decides to plummet again (as is the norm in Peri) I will likely need to restart HRT but I'm hoping that I can restart on a low level and work my way up. I am finding it so hard to know how to manage these gigantic swings in Estrogen that have been occuring over the last 8 months and if stopping HRT altogether and restarting low when I need doesn't work, I am likely going to go down the GNRH route to turn everything off and at least have a stable base to work from.

There doesn't seem to be enough recoginition that high Estrogen can be equally if not more debilitating as low - I see a lot of people/doctors assuming if you're getting anxiety/palpitations/insomnia that you need to increase... more and more E seems to be the answer, and it absolutely is for some women. But there doesn't seem to be enough recognition of just had bad too high Estrogen can make you feel. It really has been a learning curve for me!

[IceLolly]

Hi Gilla999, really sorry to hear how bad things have got for you. I have also had a year from hell with HRT-forced bleeds as well as my own cycle coming through, so having heavy, painful periods every 12 days, debilitating sciatica, feeling sick, tired, irritated, etc. I agree, a lot of emphasis is on 'have more oestrogen, you need to up the dose if those are your symptoms ', etc, but an overdose of oestrogen as you say is horrible. So it occurred to me that after my year of hell, where I was on HRT, I actually felt worse each time a new patch went on, so I wondered if actually my body is ok with my new, lower levels of oestrogen and that I shouldn't be forcing more in. So I halved my patches and stopped. And apart from 5 or 6 night sweats every night (which I'm actually ok with), I now feel so much better. I feel like myself again, I take collagen in the morning, and multivitamins, eat well and have been able to start running again. I really don't think the HRT did anything for me except lift my mood when I was a bit suicidal, not I'm off it, I feel better than I have in about 8 years. Hope that gives you another perspective. Xxx

[Gilla999]

Thanks for sharing your experience IceLolly!  Very interesting that you felt better after stopping HRT. How on earth do you cope with the night sweats though?! The debilitating night sweats and 3am insomnia were what led me to HRT in the first place, once I woke up with a bang at 1/2/3am I could never get back to sleep at all.

I'm so grateful for HRT so I'm in no way bashing it, but I wanted to make the point that high Estrogen can be equally as bad as low. It is so hard to manage these massive swings that I seem to be getting which have essentially left me needing 4 sprays of HRT to 0 sprays in the space of 6 weeks. That's a mighty old swing!

[sheila99]

Good luck, I hope you feel better for it.

[Amazing grace]

Hi Gilla999, really sorry to hear of your struggles but I can really relate to what you are saying , I too have struggled with getting a good balance on hrt I started it at 43 now 49 , and ive had the same response from doctors when I describe my symptoms there only answer is use more estrogen, I commonly hear that estrogen is a wonder hormone and makes us feel good but you are absolutely right too much becomes toxic and can be just as bad if not worse than too low , hrt has controlled my flushes well, but the joint and muscle pain remains awful actually it’s worse, I get bouts of over whelming fatigue heart palpitations which I’ve never had off hrt only on it, racing heart and spikes in bp the insomnia has never been cured ,I too have had the waking every hour or I’m just plain wide awake until 5am , I’m currently on my 3rd night of this I go round in circles with nausea , headaches and stomach pains , but the worst is the horrendous jittery feeling it causes not constantly but it comes in bouts when estrogen is obviously too high, I’ve been thinking for ages about getting off hrt so I can actually see what what my own normal is and then I can separate what the hrt actually causes, I think In peri it just adds too much at times I think getting an even balance may be easier post meno , I was on 4 pumps of estrogel down to 3 now will be moving to 2 soon and so on until I’m off it I then like you may restart really low if I feel I need too , hrt is absolutely a great thing and works amazing for a lot of women, but there’s not enough emphasis on using too much or the fact during peri it can create awful spikes in estrogen and result in feeling absolutely crap , I don’t think it helps that all these celebrities claim how amazing they feel, I mean it’s great they are creating awareness but I’ve never once heard one of them say I’ve struggled to get it right and I still feel awful , not a true representation of how it really affects alot of women, and for a change it’s really nice to read icelolly’s post where she’s had a positive outcome getting off hrt that gives me hope that hrt is not the be all of feeling good at this stage of life but absolutely agree with you that too much can cause awful symptoms, hope it goes well for you and you start to feel better soon will follow your progress with interest, take care x

[Gilla999]

Thanks very much for the good wishes Sheila, much appreciated.

Amazing Grace I can so relate to everything you've said, I could have written all of that myself. It's the wild fluctuations that I'm finding impossible to manage because they seem to be so huge from month to month. I'm now pretty able to identify what is high vs low symptoms which at least helps a bit. Toxic regarding high E really is a great descriptive word to use, that's how it feels!

I couldn't agree more with what you say - there is too much emphasis on increasing being the only possible solution. I've also found the notion of younger women often needing to be on higher doses a little confusing - surely if your Estrogen is spiking high as well as low at times then having a high dose is only going to make it worse. My NHS meno doctor said it was to even out the fluctuations but I don't understand how they think it does that.

I haven't had more than 4 hours sleep a night since this spike started in mid December, so I feel you on the sleep thing. It makes it hard to cope with everything else. Also agree on the celebrities - I think the work they're doing is fantastic but as you say I haven't heard a lot of stories about how difficult it is to get the balance right.

I'm fully not expecting to be off HRT forever or even for very long. My E will plummet soon enough and as soon as those night sweats and 3am insomnia return I'll know it's time to start again - hopefully on a lower dose for now.

I'll keep you posted, wishing you all the best too xxxx

[Mary G]

Gilly, have you tried to dampen down the oestrogen spikes with progesterone cream?

It's a long shot but it you take a look in the Alternative Therapies section of here, there are several members with similar problems - Crispychick knows much more than me so it's worth reading her posts.

Being top heavy with oestrogen is as bad as not having enough I believe.  Looking back, I think it contributed to my silent migraines years ago.

[Gilla999]

Hello Mary, yes I'm aware of the thread, Scampi and I talk often 

I take Utrogestan vaginally for 12 days out of my cycle (currently taking it now) and it doesn't have any benefit on the problems, even when my Prog level is a healthy 47 nmol. I also take Montelukast, Famotidine, all the Antihistamines under the sun etc - nothing makes any difference.

My Estrogen level in Dec when all this started was 957 pmol so way too high and triple what it had been a month earlier, without any changes to my HRT.  So I'm fairly certain that the existing autoimmune / mast cell tenancy I have has just been activated by the high E, as I'm not like this all the time!

[Mary G]

Gilly, that is a very high oestrogen reading and it would explain your insomnia.

For what it's worth, my experience with vaginal Utrogestan was absolutely nothing like my experience with transdermal progesterone.   I have no idea why, there is no logical explanation other than perhaps 100mg in one hit is too high.  I know a lot of women use progesterone cream trice daily to get a more even dose so perhaps than goes some way to explaining it.

If you haven't already tried it, progesterone cream might help.

[Gilla999]

Thanks Mary, it can't hurt can it!

[Kathleen]

Hello ladies.

I just wanted to add that the NHS consultant I have spoken to most definitely believes that too much Oestrogen can be as problematic as too little.  Apparently he sees many women in his clinic who are struggling with too higher dose.

 I am very post meno but on his advice I began lowering my Sandrena gel and discovered that the equivalent of 25mcg brought a return of some flushing, night swears and vaginal atrophy. All of which I could cope with but the increased tearfulness was troubling.  I then moved back to 50mcg and the physical symptoms have resolved though I am still over emotional.

I was reassured to hear the consultant's experience and I hope this helps you in some way.

Take care ladies.

K.

[VanillaLover]

Hi Gilla,

I get all of what you are saying! I am now at the stage where (I think) I can tell the difference between my own high oestrogen spikes and the “normal” declining oestrogen levels I have at other times.

I do wonder if the HRT makes the high times worse, but then I guess it makes the low times easier too. It’s a balance and it’s not easy!

Just when you think it’s sorted, levels change, symptoms disappear, reappear, new ones start…it’s difficult.

I am on 50 patch….still struggling sometimes but some intuition is telling me that higher will not suit me. Perhaps I could get away with 25 I don’t know. I’m sticking as I am for now and muddling along.

Let us know how it goes, I’d be interested to hear

[VanillaLover]

Just to add, I think the celebrity HRT culture is driven by post menopausal women like Davina etc- not perimenopausal as such so they are (generally) not suffering with fluctuations so much any more but more just low levels of oestrogen which has been ongoing for a while. So I imagine they do feel amazing on HRT!

Anyone correct me if I’m wrong though! I’m not a great celebrity follower!

[Gilla999]

That's my sense too, Vanilla. It's the same sort of thing with Meg Matthews who is also post meno. The huge swings of Peri I am having every three months or so are just absolutely impossible to manage with HRT. I start Zolodex injections on Thursday next week - I'm extremely nervous, I know it's not going to be easy but I am hopeful that because I know very well now my symptoms of low E vs high E and I'm familiar with Lenzetto and how I react to it, that as long as I compensate with enough of a dose to counterbalance the sudden drop in E, I will eventually be ok and on a steady dose of E, which is the critical thing for me. I'm also having a Kyleena coil fitted in a few weeks' time.

Please wish me luck everyone - it's a big move, and I'm very nervous (but feel I've been left with no other choice) xx

[Amazing grace]

Good luck Gilla999 , hope it all goes well for you and you find that happy balance that gets you feeling good , wishing you all the best , take care and update with your progress xx