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[Pippa52]

Hi Everyone

I seem to back on the bandwagon of trying to get my oestrogen only HRT dose right. n   At the moment have been on Estradot 56 (37.5 plus a half 37.5 patch) for 2 years but over the past few months have been getting more and more symptoms of what seem to be too high oestrogen i.e. headaches, acute anxiety, not sleeping and keep waking up feeling so anxious, bloating and a change in bowel habits and tiredness feeling weak and washed out. Have also lost over a stone in weight over the past year which apparently also can have an effect on dosage levels I was told.  I have on the advice of the Doc from today dropped my dose to just a 50 patch (ridiculously sensitive to dose changes so have to take things super slowly) and I just wondered if anyone else had been in a similar boat and if so how long did it take for the symptoms to start to improve.  At the moment I just feel so wired and jittery its really horrible to try and cope with the anxiety. Going higher on dose has ALWAYS made things worse for me and Doc said definitely to go down on dosage xx

[Wrensong]

Hi Pippa, I'm in a similar situation & it's an utter pain  .  On oestrogen only following hysterectomy 2+ yrs ago & have been on HRT for 10 years, mostly at higher doses than now.  I reduced to 30mcg 5 months ago to try to work out which of my current symptoms are due to side effects, which still a likely consequence of menopause & which possibly due to other chronic conditions & surgical legacies. 

In mid-60s, my sense is my body has become less biochemically agile if you like & is now struggling to process oestradiol efficiently.  A worry as I am underweight with osteopenia so had really hoped to be able to continue on at least a 50mcg dose for bone protection.  That said, any oestrogen replacement should help & at this age I need to be pragmatic rather than idealistic & concentrate on improving QOL.

Main issues are chronic insomnia due to intense overheating with horrible associated adrenalin/cortisol reaction of pounding heart, irrational anxiety & nausea, v frequent feverish nightmares, sluggish digestive tract & fluid retention, both the latter causing v uncomfortable bloating with knock on effects on bladder & bowel comfort & function.

With somewhat inconsistent response to the reduction in dose, in uncertainty & frustration I've gone back up to 37.5mcg a couple of times, but each time have definitely felt worse on the higher dose within a few days. 

Still a work in progress, but I consistently find that fluid retention & digestive issues (& the horrible consequent bloating) improve within 10 days or so on doses <37.5mcg.  Overall 5 months on, sleep seems somewhat better on the lower dose but it varies from night to night & there's still some way to go to get to a stage I'd say is adequate. 

Atypical hypothyroidism is one condition in the mix muddying the picture for me, so assuming your situation is more straightforward I'd really hope you would feel more consistent improvements sooner.

W x

[Pippa52]

Wrensong ....thank you so much for your reply and I am so sorry you are suffering too. This roller coaster of dose adjustments/hrt shortages and the adverse effects are so difficult to deal with.  Its beyond frustrating when you think you have found your 'sweet spot' dose only to find further down the line its not then right again.  I am 72 years old had a hysterectomy aged 42 and have been on oestrogen only HRT ever since.  Was on Oestrogel for over 20 years and then it stopped working for me after the shortages so was swopped onto Evorel (gave horrendous migraines) Lenzetto (super easy to use but due to not being able to adjust the dose to suit me (two sprays not enough 3 sprays too much and one spray worse than useless) I finally got put on to Estradot which when I eventually got the dose right have worked well up until a few months ago when the present symptoms crept up on me.  Developed Atrial fibrillation after Covid jabs so have to be very careful on dose changes of oestrogen to which I am super sensitive or it kicks off heart ectopics etc.
It sounds like you have/had very similar symptoms to me and they are hard to live with so I really empathise with you.  Thank you so much for your time scale of things improving that is so helpful.  I am sure you are right in that even a lower dose of HRT is going to give us some bone protection etc.
Night times are horrid and my sleep is absolutely rubbish and then waking up in a total panic (for no other reason) vivid dreams too make it very hard to get back to sleep at all which of course makes for a vicious circle all round
I hope so much that the improvement for you will continue and that things really do settle down for you. 
I will see how I go on with the dose reduction (I was on 3 pumps of Oestrogel originally) and hope things start to improve.   I can certainly notice the dose reduction this evening already but I know those particular symptoms do pass I just hope the other ones do too in time.
Thank you again so much for taking the time to reply to my post I really appreciate it x

[Wrensong]

Hello Pippa & thank you for your sympathetic reply.  I remember the awful time you had during the previous shortages & was so sorry to see things are once again difficult for you.  It’s dismaying isn’t it?

Like you, I’ve had probs with ectopics in the past, in fact 24/7 for a horrible decade before finally starting HRT 3 yrs postmenopause, so I know they ramp up the anxiety around known triggers we feel we have little control over.   Mine tend to surface again with changes of either HRT or thyroid medication, but thankfully they are less intense, sporadic rather than 24/7 & flares only tend to last a few weeks while my body settles following the dose upheaval.  So ditto re need to make adjustments very carefully.

Over the years I’ve worked my way though nearly all forms of HRT bar implants & have been on varying E2 doses up to 75mcg pursuing optimal symptom management, but can no longer tolerate the higher doses which at this age feel toxic.  Part of the problem for me, we think, is that numerous bloods have shown I get very variable absorption from transdermal methods, but don't do well on oral due to migraine history & thyroid interaction.  At the moment I’m on Estradot on which I seem to do best, but with the frustrating shortages forecast to continue into 2026 that’s unlikely to be sustainable.

Yes to horrendous nights, so I feel for you.  Awake again suddenly from 2:05 until past 3:45 last night, finally dozing off some time after that until until just before five & now up since 5:30.  A mixture of horrible nightmares & extreme overheating with the associated repeated physical “panic” response you mention, over which we have no control & which leaves us too alert to easily get back to sleep.  All so hard on the body & embarrassed to say this is my 20th year of them.  Despite everything we’ve tried they are my most resistant symptom.  The last 2 years post-hysterectomy have been some of the worst, contrary to expectation given I'd already had oophorectomies some years before.  That said, it is good to now have no heavy cyclical bleeds & no further need for progesterone to which I was horribly intolerant in all its forms.

I very much hope you will soon start to feel a lot better & gain blissful stability for the long term.  As you were well on HRT for 20 years, it seems very likely you will be able to achieve this once you find the dose your body needs now.  Sending a hug & all good vibes your way.

W x

[Pippa52]

Hiya Wresnsong

Yes totally agree its dismaying the way our hormones or lack of affect us.  So sorry to hear you have had ectopics too they can be a bit worrying even though we are told they are benign its not a nice feeling.  I tend to get them at dose changes, times of stress or with viruses.

Like you I am on Estradot patches which have been really good for me but no again there is yet another shortage and I dread the fact of having to change yet again and really have no idea what to go onto.  Can't take Evorel which is what seems to the alternative most people are given.  I do have some Estradot left but nowhere near enough to last till next year.

So so sorry to hear about your nights - do think too everything always seems worse in the middle of the night.  I HATE the awful panic feelings the second I wake up even though there is nothing to panic about my body clearly doesn't agree Its so strange it feels like a huge adrenaline surge which I guess it probably is but linked to hormones.  I'm coming back as a man!!!

I so hope that things will improve for you - it seems these things are slowly slowly which is very frustrating.  I do feel less wired and jittery today but very early days only 24 hours into the dose cut down so I won't hang out the bunting just yet.

Take care of yourself and I so appreciate your posts - thank you. xxxx

[Wrensong]

I HATE the awful panic feelings the second I wake up even though there is nothing to panic about my body clearly doesn't agree Its so strange it feels like a huge adrenaline surge which I guess it probably is but linked to hormones.

  Yes, they are absolutely dreadful, I couldn't agree more.

Would be good to know how you get on if you want to let us know at some point.  Everything crossed that the reduction works out well for you.
Wx

[Minicat]

Yep, been through that. Dropped mine slightly and felt worse for about two weeks, anxiety, no sleep, jittery. Then things started to calm down. Losing weight can definitely make the same dose feel stronger. You’re doing the right thing easing down slowly. Magnesium helped me too.

[Pippa52]

Wrensong - I absolutely will stay in touch.  So far (day 4) things have certainly improved and I slept considerably better the last 2 nights and bloating has also lessened as has the panic/anxiety which although still there is at a lower level.  However I will reserve total judgement till quite a bit more time has elapsed to find out the longer term result.  This site is so amazing for help and hearing other people's experiences.  Getting the dose/level right seems to be a total nightmare for so many of us along with the right type of HRT that suits each individual person. Thank you again Wrensong you have been so kind and supportive x

[Pippa52]

Minicat - thanks so much for your post and I am so so pleased for you that dropping the dose has helped your symptoms.  That is also really reassuring to know.  I hear you re magnesium and I do use a magnesium spray and try to eat foods high in mag too.  It seems to be a very important nutrient and I read that so many people lack  good levels of it it apparently xx

[Wrensong]

Pippa, that's nice of you to say, thank you, but it's what we are all here for & though I don't like to hear of others having similar probs to me, there's solidarity in knowing we're not alone with a protracted struggle to get things right.  So thank you for being upfront about what you've been going through as that's helped me too & doubtless other readers, whether they feel comfortable posting or not.  I imagine many lurkers are also helped by this site, as I was for some time before joining!

So far (day 4) things have certainly improved and I slept considerably better the last 2 nights and bloating has also lessened as has the panic/anxiety which although still there is at a lower level.

That sounds promising  though as you say, early days.  I'm pleased to think you'll let us know how things progress in the coming weeks too.  Please PM me any time if I'm not around.

I'm reducing my oestradiol dose a little further, now on only 25mcg to see how that works.  I do think it's possible that some of us do better on lower doses long postmenopause, though I also know there are women on here in their 60s & 70s who have also not felt the need to go lower, which must be wonderful for them.

Wx

[Pippa52]

Wrensong - yes totally agree it is so helpful hearing other people's experiences etc and what works for them.
I hope so much your reduction works well for you.  The meno consultant I saw said to me that even lower doses do have a good effect on our bones which is good to know.  I also think probably people like us that are super sensitive to dose changes might possibly mean we need less  - as they say less is more .
Yes of course will keep in touch and likewise please feel free to PM me and I would love to know how you get on with the lower dose.  Just to say my heart has been kicking off a bit with ectopics this morning but I kind of expected that as any dose change for me with anything can cause this.  xxx

[Wrensong]

Oh, the wretched ectopics - I'm sorry.  They are horrible but we've both been there before & survived to tell the tale.  I hope they will pass quickly for you.  If you can, be kind to your body with as much R&R as you can manage in the coming weeks & hopefully that will mitigate the inevitable stress of the dose change.

My body has decided a stonking headache & a lovely cold sore outbreak is the way to make its displeasure known today!  I am ignoring it & keeping on top of watering the droughty garden so that at least I can see I'm achieving something 

[Pippa52]

Wrensong - ahhh thank you.  You are right we will survive whatever our bodies seem to want to throw at us today and carry on .  I know what you mean about droughty gardens.  I have been doing just the same.  Our water butts are now empty of rainwater so it's over to to the hosepipe unfortunately with no rain forecast any time soon.  So sorry to hear about your headache.  If its any consolation I always get one too when I do a dose change and it always kicks in very soon after I've done it.  Hopefully yours will die down very  soon.  take care of yourself xxx

[Pippa52]

UPDATE - well day 5 of the lower dose and I can certainly feel it.  Headache, jittery and very washed out, rotten sleep again after a few really good nights and some ectopic heartbeats.  This is typical for me though any alteration of any dose of anything and I notice symptoms however small the change is.  However on the positive side the bloating and gastric symptoms have improved a lot after the cut down.  I am sure things will adjust in time hopefully in not too long a time scale.  I know there are other ladies on here who also suffer with small dose changes too xx

[Kathleen]

Hello ladies.

I just wanted to add that my NHS Consultant assured me that less is more for some of us, especially older women who are very post meno.  He said that he had patients who were doing well on 12.5 mg every other day.

I value his opinion as he has been a Consultant Gynae for over thirty years ( he had just taken up the post when he delivered my son ).

Wishing you well ladies and take care.

K.