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[vintagefiend]

Hello,

Ah! i'm struggling
i'm trying to change from estradot to oestrogel to gain a bit more control- estradot all over the place: highs when first put on, then feels like lows.
have used gel before- wish i'd stuck with it!
current oestradiol levels only around 150 but i can barely tolerate 1 sodding pump of the gel!! feel so bloody anxious
testosterone basically zero- no ovaries/no womb- desperate to be able to start this but need to sort oestradiol first.
so f**??ing fed up
started exercising over last couple of months- ironically think this is impacting negatively on oestrogen levels and tolerance of hrt but i can't believe it's not a good thing overall and am definitely continuing.
is this because you can't undo a lifetime's unhealthy living in a couple of months??! will it all settle eventually?

[Gnatty]

Isn't it more likely that you are feeling anxious because your oestrogen levels are so low rather than because of the one pump of oestrogel? I would have thought that as you increase then the anxiety ought to settle. I find I am better if I split my dose morning and night, it seems to make me feel more balanced. One pump is such a tiny tiny amount especially for someone with no ovaries.

[Amazing grace]

Hi, I did the same as you I was on gel went to patches not a good move for me, tryed everol first then estradot, just didn't get on with it, I had highs when first applying then felt like a drop the day before changing, back on gel almost a year now, and worked my way up to what I'm on now 4 pumps, the anxiety is horrible I get it when first starting a new hrt, and with increasing, it's that thing of riding it out until your body adjusts and levels out, I too wish I'd of stayed on it because I was in a really good place, going on patches messed that up, I'm now struggling with the 4 pumps dose as it starting to feel too much, oh god the frustration, how long you been back on gel?, I have no womb but I retained ovaries, I was thinking about trying testosterone, I think it takes time to undo an unhealthy living, I'm not sure if exercise impacts estrogen levels, but have read somewhere (hystersisters site I think) that the more active you are the more estrogen you use, but don't know if that's true, if you've not been back on gel long the anxiety should subside the longer you use it, good luck hope you get improvements soon x

[vintagefiend]

Thank you, Gnatty and Grace for replying

i'm a weirdo, i reckon! just had oestradiol bloods back and my levels now 382 on one pump estrogel! and i stopped 50 mcg patch for few days before oestrogel just to have a break!

in answer to Grace's question, i've only been back on gel a week and a half but have had longer, aborted attempts to reinstate previously so have little patience- this time i'll stick with it though. perhaps you need to try lower and build up to the 4 pumps??!! yes, it is very frustrating!

i don't think my oestradiol will last at the higher level, so then i'll add more slowly. i think that when i change things (ie from patch to oestrogel)  i can be hyper sensitive initially. i'm pretty attuned to things and think i can tell if it's high or low oestradiol that's the problem- but sorting it and maintaining consistency is another matter!!

but daily application feels better for me- rather than 3 day patch- much more controlled.

the other result is a testosterone of 0.087 and correspondingly very low free testosterone. this is obvs too low and what i will address now. feel like scratched record but have again been super sensitive to it when tried before! minuscule amounts have left me with man levels in a matter of couple of weeks!! and i felt dreadful!! my shbg- which i've banged on about before- is very static despite all my exercising and dieting- i think it's affected by my other hormone levels as well as having an effect on them, if that makes sense- everything impacts on and is impacted by everything else.

again, i do believe this is the legacy of poor living that's led to these difficulties in balancing my hrt, so i'll keep exercising. it's soooo frustrating when you know what you need but can't tolerate it.

if i'm being philosophical, it's maybe good that it's not been plain sailing for me as i've had to address my lifestyle.

feel quite wired today on my 1 pump oestrogel but will keep on keeping on.

thanks again, ladies

[joziel]

Wow, it's pretty amazing to have 382pmol on one pump of oestrogel - and you've got no ovaries so it's not like they can be contributing anything.

When you say 'anxiety', what does this feel like physically? I think lots of women are talking about 'anxiety' but they can have many different symptoms....

[vintagefiend]

hi joziel-

i know- it's crazy but prob won't last- in fact, it's too much too quick!

the anxiety is that heart pumping, surging anxiety at 3 am, then 5 am etc- not so much a psychological anxiety as physical at this point (if that makes sense!)- i've woken myself up gasping a few times!! but do feel a bit on knife-edge- knotted tummy- perhaps also cos sleep's obvs disrupted

i also feel what i can only describe as shabby- which i've come to recognise as a feeling i get when overwhelmed by oestrogen

i wanted to clarify that i gave total testosterone result before and my free testosterone is actually 0.001- which sucks! -just in case it confused anyone

once i've stabilised my oestradiol will def give testosterone another go

[Pippa52]

Hello,

Ah! i'm struggling
i'm trying to change from estradot to oestrogel to gain a bit more control- estradot all over the place: highs when first put on, then feels like lows.
have used gel before- wish i'd stuck with it!
current oestradiol levels only around 150 but i can barely tolerate 1 sodding pump of the gel!! feel so bloody anxious
testosterone basically zero- no ovaries/no womb- desperate to be able to start this but need to sort oestradiol first.
so f**??ing fed up
started exercising over last couple of months- ironically think this is impacting negatively on oestrogen levels and tolerance of hrt but i can't believe it's not a good thing overall and am definitely continuing.
is this because you can't undo a lifetime's unhealthy living in a couple of months??! will it all settle eventually?

Hi - very much in the same boat as you.  I was swopped over to 4 different types of HRT during the shortage of Oestrogel.  Estradot and Evorel patches made me ill, horrendous migraines and felt totally jittery and caffeinated. I have no womb or ovaries either btw. 3 weeks ago I went back onto Oestrogel.  Like you I feel really anxious and panicky and I think it's because I haven't got the levels right yet.  I was always on 2 and 3/4 pumps of Oestrogel for over 20 years with no problems.  This time (because I was supposedly on a lower dose of the other ones) I started at 2 pumps and have gradually worked my way back up to 2 3/4.  I have really struggled over the past few weeks with awful anxiety/panic, episodes of fast heartbeats and high blood pressure and a huge lack of sleep as felt too wound up and jittery to sleep.  I am slowly starting now to get more sleep and most of the time feel less anxious although it is still there and racks up sometimes again. .  I had an oestrogen blood test for levels this week and get the results next week.  It was 91 so really low a few weeks back.  I think changing over types of HRT really does mess one's system up and it is going to take quite a while to level out again.  I have been told at least 3 months so hang on in there.  Your symptoms sound like low oestrogen to be honest. Mine definitely were and still are as it hasn't kicked in properly yet. Like you I like  the fact that with Oestrogel you are so in control of the amount (I actually weigh the extra bit out on mg scales so I know I am being totally accurate.  So hope you start to feel better soon. xx . xxx

[joziel]

vintagefiend, I can also relate to what you describe. If you look back at recent posts, you'll see a very long one about 17 pages long  called 'too little estrogen or too much?' or something - where both Pippa and I have documented our journeys...

I am now off all estrogen for 10 days. I am still having trouble. I seem to be okay during the daytimes (which is an improvement because on patches it was 24/7 by the end) but at nighttime I get palpitations which feel fluttery, in the top of my chest and somehow the palpitations make my hands and feet a little throbby and tingly.

The palps are very subtle so it actually took me a while to realise that was what was happening. I used to think it was just 'anxiety'. I try to sleep but, whilst I can dream, I can't sleep deeply when I feel like this. I also wake early, around 5.30am. In the past, I have had the sudden waking up from sleep too.

The weird thing is that I can be totally fine getting into bed and slowly drifting off - and it's the moment when I lose consciousness, that I suddenly feel my body is doing this. What the heck is it about that moment which triggers this, I've no idea.

I've now had enough of all this and I'm trying to see a cardiologist. I've been referred but not had the letter with a date through yet. I left a message on the answerphone for the cardiology dept today but no one's got back to me yet and the secretary doesn't work Fri afternoons. I will go private if I have to.

If your estrogen levels on one pump are 382pmol, I don't know if you should increase further. I mean, there are two ways to look at it - that the level is still too low for you personally (although it is protective for bones and in all other ways) or that you are very sensitive to estrogen, like some others of us, and perhaps increasing isn't a good idea. That's what I did, right up to a 75 patch (because I was only 233pmol on a 50) and I ended up in A&E....

[vintagefiend]

oh Pippa and Joziel- thank you both sooo much!!

i can't tell you how much of a relief it is that you understand- though sorry you're going through it yourselves, of course!

Pippa,
you sound like me with the weighing out of gel! when i was trying testosterone i had teeny 1ml syringes that i filled about a tenth full or something- and still it sent me crazy. very interesting that you don't have ovaries either- do you take testosterone or is that something to be tried once oestrogen stable? be really interesting to hear what your oestrogen levels are next week- i hope they're good. also, i'm going to take your advice and just hang in there for up to 3 months to give it all a chance- prob without changing much- ie 1 pump unless i feel i can tolerate more- i think i really need to go slowly and have some patience. good luck to you xx

Joziel,
yep, definitely that thing of surging awake the moment sleep begins!! it's unbearable. i have to say, mine is less than it was a month or so ago- i wonder what's different- i really should keep a diary but never be arsed! i hope you get the cardiology appt through soon and obviously i hope it's all ok for you. it might have been when i was trying to increase my patch that it was particularly awful. i was trying to get up to 75mcg too and just couldnt make it!! tho had been on it previously- can understand why you ended up in a and e. yeah, i'm going to stay on 1 pump for the moment and just give it time. i think the exercise has muddied the waters too but i won't stop- though absolutely can't be arsed today- feel too crap! by the way i also have these dream-filled unrefreshing sleeps- can have 7 hours (maybe slightly broken) sleep and feel dreadful- like today! the other thing was you mentioned your arms/legs and reminded me that very recently i was being driven demented by buzzing legs at night- was convinced something was vibrating under floorboards but that wasn't the case- oh god i sound a right hypochondriac! are you planning on trying oestrogen again at some point? do you have any idea what your levels are?

it's all so hard, isn't it? i'll have a good read of the thread(s) that you two are on. i just wanna feel normal. promised 13 yr old daughter a trip to town today and have had to renege as cannot face it. it was son's 16th b'day yesterday and i just felt shite! the bloody guilt- who'd be a woman??!!

[joziel]

vintagefiend - the legs buzzing and feeling like the floorboards vibrating sounds like me when I was going through the worst throbbing episodes - I thought it was the mattress itself moving under me in bed and that my husband must be doing something like scratching himself, but it went on and on and on and then I started to think 'he can't be scratching himself this long...' - so I sat up quickly to see, and he was fast asleep.  At which point I realised that it was ME THAT WAS THROBBING  Which was really pretty weird.

I associate that with high blood pressure now, because I know that the HRT did increase my blood pressure - not every reading and not always - but enough to make it weird, for me. (As usually it is perfect.) Google told me that you can feel yourself throbbing and pulsing sometimes if you have high blood pressure. Since I stopped the estrogen, my blood pressure has been completely normal within about 24-48hrs of stopping. So that's one part of the problem fixed, but I still get the palps.

I still feel like I am 'fizzy' now, but I associate it with the palpitations. When I have the palps, I don't feel like my heart is moving blood around my body properly. My left hand and leg gets tingly like a bit pins and needles-y and often that is the first sign of palps coming. And I can feel the blood sort of pulsing, in the same way as before - only with normal levels of force rather than high blood pressure levels of force!

At the moment I need to know what is going on with my heart and to have anything serious ruled out. If they want to tell me these are benign ectopics and I should ignore them, then fine, that will greatly stop any additional anxiety about what is happening. And maybe I can get on some beta blockers so I can sleep properly - hopefully that will be just a short term thing as I don't like to take prescription meds long-term.

I will test my estrogen levels now I am not on anything as well, although normal estrogen levels from the ovaries can fluctuate so I don't want to overreact if the level is low - I will probably do 2-3 Medichecks tests to see what's going on with it. If it is consistently low, then I will need to attempt some estrogen again... probably an incredibly tiny amount, increased incredibly slowly and maybe not using patches but the gel or Lenzetto. But I'd like to be completely stable again before trying that. And I need the cardiologist to check out my heart.

My levels in the past... Well when I was on the 50mcg patch, my level was 233pmol - I still had all these estrogen side effects, even when my blood estrogen was pretty low.    I was told to increase, so went up to 75mcg patch. Then I ended up in A&E with high estrogen side effects, and decreased down to 62.5. Stayed there for 6 weeks, but still felt all these estrogen side effects so reduced to 50. But I knew that wouldn't fix things as I'd had these side effects on the way up at 50, so reduced again down to 37.5mcg.

I did a blood test at 37.5 and that was 453pmol - so basically I almost halved my patch and I doubled my estrogen. The only way that would be possible, is if my ovaries started making some. That is entirely plausible since I have a low FSH still (4) and since I was on the desogestrel POP before starting HRT, which had suppressed my estrogen and ovaries down to almost nothing. So I felt okay about stopping the estrogen. I tried to reduce to 25mcg but the estrogen side effects were still going on and was by this point 24/7 palps with no let-up at all, so I stopped after seeing my GP. (Blood pressure 163/90.) Now at day 10 after stopping. I haven't had any low estrogen symptoms coming back yet. I've been monitoring blood pressure 2x daily for a week and it's never been higher than 124/70 and usually is between 105-115/65.

Meanwhile I've spent hours today reading accounts and other people's experiences online (I mean, like 6 hours, my entire Saturday afternoon!) and it seems that there are some women who are sure that Vagifem causes them to have palps. These are women not taking systemic HRT, which rules that estrogen out. I know it's supposed to only affect the local area and be an incredibly low dose, but there are many of these women and they are sure of it. So perhaps some of us are hyper sensitive to estrogen. I have been taking Vagifem and Ovestin nightly since stopping HRT, so I'm now curious if this is why the palps keep on. I am going to try switching to every other day and see if I am better on the days I'm not taking it. I did really need it - when I reduced my HRT to 25mcg, I got my VA symptoms back again and the Vagifem nightly totally fixes that - but now I've done a loading dose for 2 weeks, maybe I can do every other night....

I am totally befuddled by what my options are if I can't even tolerate local estrogen without this happening and if I'm going to get VA.    I might try the Ovestin only (as it's estriol and not estradiol) internally and externally.

Starting to think I should have had a sliver of ovaries removed at 25 to be reimplanted in me now, enabling me to avoid menopause and have my own hormones forever 

[vintagefiend]

Hi again, Joziel-
hope today's a reasonable day for you

that leg buzzing thing, oh my goodness! i thought it was pipes vibrating under my bed and would get up in the night to find everyone asleep and no-one having a 3am bath!!

i don't get the vibrating now so that's something. but this anxiety's going nowhere.

the patch- and perhaps hrt in general- has def affected my blood pressure too. and normally mine is athlete-low (without being an athlete)- it was very raised when i went to get a private testosterone prescription couple years ago, but the doc still gave it to me. needless to say the testosterone sent me through the roof but i persevered through 3 miserable and crazy months- i'm definitely giving things a chance to work- can't say i'm not!

i have read the thread you mentioned and obviously it resonates very much with me. i'm still taking just 1 pump and even that feels a lot but i'll stick with it. so weird that you decreased patch and oestrogen increased- but it's the kind of thing i get!

re the vagifem- i don't have experience of that, but it puts me in mind of docs saying that mirena only local, not systemic therefore no symptoms- utter bullshit!! ended up removing my own mirena- not that i'd recommend that- and was much better as a consequence

we're all different of course, i realise that but i'm def seeing some similarities with you! are you still on testosterone given that you've stopped oestrogen?

i see you do medichecks too!! i think it's a great service and they've certainly got a good customer in me! i do find it helpful to knpw where i'm at hormonally though addressing issues is the tricky bit.
i've been trying to raise my shbg and finding it very stubborn- i'm pretty sure it's why i have such an awful time on testosterone. i've been eating better and exercising and it's not budging. i think i need full hormonal work-up- thyroid, also things like liver function just to check nothing else awry- i'll ask GP for all of that- not like i ask for much from them!! i've also read that different types of exercise have very different impact on shbg- long distance running equals raised; pumping iron/resistance equals lowered (supposedly)- i'm doing 30 min dance workout so not sure where that fits in.
am i right in thinking you're perimeno? hope you don't mind me asking- just wondered!
i had reached menopause by the time i was 48 (no periods 1 year) and had my ovaries out at 49. i'm now 50 and really thought i'd be sorted by this watershed age! i take slightly under 10mg of prozac per day and want to ultimately get off that but extremely slowly
anyway, good luck with cardiology appointment x

[joziel]

Yes I’m peri but I’m currently on continuous utrogestan at 200mg/night to suppress slight endo. Whilst I don’t have any endo pain, I am bleeding now for 7 days and counting and I don’t think that continuous during peri is going to work for me, so I’m plucking up the courage to go sequential. This is all with no estrogen as obviously that sent me insane.

I’ve stopped the testosterone for now as well because I just wanted to stop anything non-essential in case it’s contributing to the palps. I do plan to restart testosterone once I get these palps resolved and stable. I liked what it did for my libido!

Im only on utrogestan 200mg and Vagifem + Ovestin - trying 2x weekly with those so I don’t overdo the estrogen again.

Hopefully will get a call from the cardio nurse tomorrow so I can explain what’s happening and see if they can bring my appointment forwards.

[Pippa52]

oh Pippa and Joziel- thank you both sooo much!!

i can't tell you how much of a relief it is that you understand- though sorry you're going through it yourselves, of course!

Pippa,
you sound like me with the weighing out of gel! when i was trying testosterone i had teeny 1ml syringes that i filled about a tenth full or something- and still it sent me crazy. very interesting that you don't have ovaries either- do you take testosterone or is that something to be tried once oestrogen stable? be really interesting to hear what your oestrogen levels are next week- i hope they're good. also, i'm going to take your advice and just hang in there for up to 3 months to give it all a chance- prob without changing much- ie 1 pump unless i feel i can tolerate more- i think i really need to go slowly and have some patience. good luck to you xx

Joziel,
yep, definitely that thing of surging awake the moment sleep begins!! it's unbearable. i have to say, mine is less than it was a month or so ago- i wonder what's different- i really should keep a diary but never be arsed! i hope you get the cardiology appt through soon and obviously i hope it's all ok for you. it might have been when i was trying to increase my patch that it was particularly awful. i was trying to get up to 75mcg too and just couldnt make it!! tho had been on it previously- can understand why you ended up in a and e. yeah, i'm going to stay on 1 pump for the moment and just give it time. i think the exercise has muddied the waters too but i won't stop- though absolutely can't be arsed today- feel too crap! by the way i also have these dream-filled unrefreshing sleeps- can have 7 hours (maybe slightly broken) sleep and feel dreadful- like today! the other thing was you mentioned your arms/legs and reminded me that very recently i was being driven demented by buzzing legs at night- was convinced something was vibrating under floorboards but that wasn't the case- oh god i sound a right hypochondriac! are you planning on trying oestrogen again at some point? do you have any idea what your levels are?

it's all so hard, isn't it? i'll have a good read of the thread(s) that you two are on. i just wanna feel normal. promised 13 yr old daughter a trip to town today and have had to renege as cannot face it. it was son's 16th b'day yesterday and i just felt shite! the bloody guilt- who'd be a woman??!!

Hi Vintage, - hope so much you are starting to feel a bit better    No I don't take testosterone just the Oestrogel.  Think you are wise to try and level out on the one pump - I know it takes time.  I will of course let you know what my blood results say.  Personally I am convinced that the dose I am on is way too high for me personally so am hopeful of being able to cut it down. I have a feeling the Oestrogel now (it used to contain estradiol 17b and then they changed it to estradiol hemihydrate about a year and a half ago) is stronger than it used to be.  I am on the exact same dose I was on for over 20 years but the effect it is having on me is beyond crazy.  I totally understand what you say it is just soooo hard to have patience and wait things out but at least with Oestrogel it is really easy to control the dose either upwards or downwards really slowly.  It is SO hard to keep going and try and appear 'normal' to everyone around you when you feel absolutely lousy - I really feel for you.  I am sure that things will level out for you its just soo frustrating the time it seems to take. Take care x

[joziel]

Pippa, is the estradiol 17b not available anymore with the oestrogel then?

[Pippa52]

Pippa, is the estradiol 17b not available anymore with the oestrogel then?

Joziel they changed it from that to estradiol hemihydrate about a year and a half ago and they don't make it with the original formulation anymore . It is apparently estradiol with some water molecules in it or something but I have found it to be stronger personally but then it may just be me I am so stupidly sensitive to any type of dose strength change etc x