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[joziel]

HI WOMEN! If you are struggling with any of these estrogen-related symptoms, I'd really love to know your entire stories if you wouldn't mind sharing them?

I am just desperately trying to piece this area together for myself, so that I can figure out if I will be able to have estrogen in future or if I am just destined to struggle through without it. So I'm doing a little survey here. If we can collect together enough experiences, we can use this thread to get some kind of help...

The symptoms I'm considering to be part of this are:
* Tachycardia/palpitations/irregular pulse or heartbeat (this may feel like skipped beats or like a fluttering in your chest which is more subtle)
* High blood pressure or periods of high blood pressure (may not be constant)
* Feeling yourself to be pulsating/throbbing at times (this is high blood pressure, but I'm listing it separately)
* Feeling your heart to be beating harder than usual, especially at times when you would usually be restful
* Feeling your pulse to be racing or beating faster than usual
* Feeling yourself jump awake from sleep suddenly, with a startle (often when just falling asleep)
* Waking suddenly early in the mornings, every morning, feeling suddenly 100% awake and anxious
* Your symptoms being much worse at night
* Your symptoms getting worse, the more estrogen you take

If you can relate to some of the symptoms in the above list (need not be all) here are my questions, I would love for as many women as possible to answer them:

1) Please describe, in detail, the symptoms you experienced, which you believe relate to taking estrogen.

2) Did you have these particular symptoms before starting HRT? (Ie - you might have had crappy menopausal symptoms which led you to want to start HRT, but were they the same as the troublesome symptoms you got when you started the estrogen?)

3) Have you ever taken a combined contraceptive pill before in your life (with estrogen) and have you been okay with it? Did you have similar symptoms, with that?

4) What happened when you started estrogen, at what levels of estrogen did it happen? How did it all develop? Was there an initial period when things were fine, did it take a few weeks? Was it immediate?

5) Did you try/have you tried anything else to address the problems? (Like reducing/increasing estrogen? Taking various supplements?) What did doctors advise? Were you offered meds to treat the individual symptoms, rather than to understand the overall thing?

6) Did you have any tests run as a result of your estrogen-related symptoms? Such as - ECGs. Blood pressure. Echo-cardiograms. Heart rate/pulse monitored. Cortisol levels. What were the results of these tests?

7) Are you still taking estrogen now? If so, what dosage? How are you doing?

8 ) Did you decide to stop estrogen? If so, what happened after you stopped? Did your symptoms go away? How long did that take? What is your approach to dealing with menopause now? Have you concluded you can't take estrogen? How have your doctors reacted to all this? Does it seem like they are puzzled - do they have experience of other women who have reacted similarly?

9) Are you - or might you possibly - be hypermobile? This means your joints are more flexible than most people's. (Ie you can touch your wrist with your thumb, or your knees over-extend to make bananas.) It may not be all your joints.

10) Do you have any other medical conditions which relate to estrogen in any way? IE - endometriosis? fibroids?

11) Do you have any skin issues like hives or itching (whether before or during taking HRT)? Do you have any food intolerances, IBS (whether constipation or diarrhea)?

I am interested to know answers to these questions from anyone who feels that estrogen has caused their difficulties - and especially from anyone who has come off HRT or estrogen and had these problems stop. (Since that kinda proves definitively it was the addition of estrogen. And not, say, low estrogen, causing it.)

THANKS!

[joziel]

I will go first to get things started...

1) My symptoms are palpitations which are fluttery in the top of my chest. My doctor described them as 'ectopic beats'. They are not just a little flutter and then stopping, they go on and on for literally hours - it reached the point where they were constant, all day and all night. My back felt like it was crawling from the constant sensation. I also had high blood pressure which got progressively worse the longer I stayed on estrogen. The highest was 163/90 at the doctors (25 patch). Before that I had 158/90 at A&E (50 patch). My usual blood pressure is around 105/65 and I am very fit and workout regularly. I did get some lower and more normal readings when I tested at home for a week, but I can tell that on average things were very different and something weird was going on - even if doctors didn't seem too bothered. I was constantly pulsating, throbbing and pulsing. It was extremely distracting. My heart would beat harder and faster than usual, especially lying in bed and trying to sleep. I would often startle from sleep or wake early, especially on the higher doses of estrogen. Everything was much worse at night, leading to very little sleep.

2) No, I did not have any of these symptoms before starting HRT. The only symptom I had is the classic 'skipped beat' feeling, when my heart would very occasionally suddenly beat 2 beats harder than usual. This was not the same palpitation I had after starting HRT, which was a fluttery sensation that would go on for hours.

3) Yes, I took a combined pill when I was 21yo - Microgynon. And yes, I had similar symptoms then. My blood pressure was raised when I went back to my doctor about it and I also felt I was pulsing and throbbing at night. I didn't stay on it for long and switched to a progesterone only pill (Norgeston) which had the same progesterone in it as Microgynon. I was totally fine on the POP and have been on Norgeston and desogestrel POPs most of my adult life with no issues.

4) I believe I was fine for the first 2 weeks on a 25mcg patch. After one week on the 50mcg patch, the symptoms began. I don't know if this was just about time on any estrogen rather than the dose increase. At the time I was very preoccupied with my endo and whether it would or wouldn't return on HRT, so I wasn't really focussing on my cardio symptoms and didn't really think about them. I was told they would settle with time and ignored them. So I am not really sure how they developed but they got unbearable when I increased to 75. A week after increasing to 75mcg, I went to A&E. I then reduced to 62.5 for 6 weeks but things did not change much. I reduced to 50mcg, then to 37.5mcg for several weeks. And eventually down to 25mcg. None of this worked. It wasn't as extreme as at 75mcg, but the longer I stayed on any of it, the worse and more ongoing all the symptoms became. (Ie - rather than just being at night, they were all day and night).

5) As above - tried reducing estrogen. Didn't work. I take magnesium bisgycinate. Doctors at the time just advised me to continue taking HRT and that it would settle. Some doctors advised reducing estrogen (which I was already doing). No one seemed to have any definitive answers for why this was happening to me.

6) I had an ECG run when I went to A&E. It was normal. My GP listened to my chest and said I had a lot of ectopic beats constantly. My blood pressure was raised on average and overall and had very high readings sometimes - but because it wasn't constantly high, no one really seemed that bothered even though it is way higher than what is normal for me.  I have been referred to a disrhythmia clinic but the referral has not yet come through.

7) No, I am no longer taking estrogen. I stopped a week ago. It has taken a long time for things to get better but I now am okay for many hours at a time, and then will have an episode again. Night times remain harder than day times but the pulsing is less. I feel like my body has been in this state for months (of tachycardia) and it is now used to doing this and it is hard to get out of it. I am hopeful this will go away totally with more time or some beta blockers to help.

8 ) Yes, I stopped taking estrogen. See above for where I am now. My doctors all seem to have no idea about any of this. I am very worried about having to go through menopause without being able to take estrogen, but I have had a reprieve because my own ovaries have started to work again since stopping the desogestrel pill. So now I have time to figure out what I am going to do, when the time comes.

9) Yes, I am hyper-mobile.

10) Yes, I have a history of mild endometriosis.

11) I have no skin symptoms. I have no known food intolerances, but I am prone to constipation and trapped wind.

[sweettooth]

Hi joziel, I’m really sorry you are having so much to deal with.
The only thing which is similar to me is the awful morning palpitations and a constant racing heart until I get myself together, this began after my vaccine and I’m still struggling.  I tried increasing and made it worse, I’m awaiting blood results and consult with MS. Xx

[Gnatty]

Are you sure the magnesium isn't contributing? I had to stop taking it recently as I was getting some of the night symptoms you describe. When I stopped the magnesium the symptoms stopped.

[Floo36]

All the symptoms you are describing are what I have and they come and go.  Mine is down to low and fluctuating estrogen.  I’ve also done many experiments over the last 3 1/2 years as I wasn’t sure if HRT was causing any of it but no definitely not the HRT. It does take time to work it out.  I  had all sorts of tests that came back normal.  If I can get sleepy at all before sleep I am jolted awake which completely stops me sleeping, the sleep clinic diagnosed hypnogogic jerks but they are caused for me by low Estrogen. 

[sweettooth]

Floo? have u tried increasing your estrogen?

I’m on E only and fluctuating but levels are 450 to 550, it all kicked off after my vaccine🌷

[Clarella]

Sorry I have the opposite issue with low oestrogen and oestrogen helps raise my blood pressure so I can’t comment.

However, have you excluded over active thyroid?

You can get slow release beta blockers. I’ve been on and off them
for 25 years after Paroxetine really messed me up - I found them useful for social anxiety and also palpitations caused by they Paroxetine withdrawals and actually thyroid issues. (You’re not supposed to be on them really with hypothyroidism but I found they really helped me, possibly as I’m also hypermobile. They think we pump out extra adrenaline to keep us going hence why beta blockers can help!)

[Floo36]

Sweet tooth, yes I have but I have absorption problems with all hrt, I’m still trying to get more Estrogen in.