Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: lillith112 on July 10, 2022, 09:18:04 AM
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Arrrr I'm so frustrated, was switched to Evorel 75 due to shortage of my Estraderm, got continual migraines, then changed to Estradot. I'm getting mild headache at night, but I cannot sleep, I feel wired and irritable, and during the day I feel like I need to be doing something. It's a horrible feeling 😞
I'm wondering if I am maybe absorbing the estrogen better in Estradot and it's now too high, or maybe I'm not absorbing at all. I could scream as I don't know what to do. I'm considering cutting 1/4 off at next patch change ? 😭
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In truth, it’s a minefield!
Estradot are tiny, so maybe try the 50 dose, rather than the 75 for a while?
Try to stick with it for a few weeks, as only time can tell If you are absorbing or not.
I was on evorel 75 for ages and am not finding them as effective.
So now, have switched to evorel 50 and 1mg sandrena! It was just an experiment that I did yesterday really, but got so much done and got up full of beans. Didn’t sleep well at all :o so who knows! Tomorrow will probably be a different story altogether!
Hopefully Estraderm will be back soon for you.
Xx
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In truth, it’s a minefield!
Estradot are tiny, so maybe try the 50 dose, rather than the 75 for a while?
Try to stick with it for a few weeks, as only time can tell If you are absorbing or not.
I was on evorel 75 for ages and am not finding them as effective.
So now, have switched to evorel 50 and 1mg sandrena! It was just an experiment that I did yesterday really, but got so much done and got up full of beans. Didn’t sleep well at all :o so who knows! Tomorrow will probably be a different story altogether!
Hopefully Estraderm will be back soon for you.
Xx
Thanks Nas, that's great you had so much motivation, but not so good being unable to sleep !
Today I have urgency to urinate like I have cystitis, this has happened before on the gel as I didn't absorb it so think my symptoms are lack of estrogen 😞 I must not absorb the Estradot very well. I have very tense neck muscles at night too and face muscles feel tension in them.
I will have to ring my Dr surgery yet again and ask for Estraderm if in stock. What a nightmare 😭
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Ah if the bladder is kicking off, it’s lack of oestrogen then.
What a shame for you. Can you get Estraderm online with your prescription?
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Ah if the bladder is kicking off, it’s lack of oestrogen then.
What a shame for you. Can you get Estraderm online with your prescription?
I'm not sure, I've never actually tried to get the prescription online.
The problem is I was also getting bladder symptoms creeping back on the Estraderm as well 😞 I had an appointment with the hrt nurse and she gave me some tiny tablets to use internally. I've not tried them yet but looks like I will have to start.
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Lilith… Felt exactly like you did on the Estradot. It’s even worse at night wake up with a jolt pounding heart horrible anxiety sweats and shakes then can’t go back to sleep at all ….yesterday was so bad I’d had enough I just couldn’t function plus the fact unfortunately I have started reacting to the glue in the patches with horrible big red itchy weals underneath where they were. AnywayI couldn’t hack it anymore so I ripped off the patches and went back onto Lenzetto 12 hours after removing the patches. The patches to me seem an awful lot stronger and I felt constantly wired , jittery and headachey plus very low mood. It’s so difficult to know if it’s too much or too little :(
I already had a blood test booked tomorrow and thankfully a telephone consult with the meno consultant on Tuesday so it will be very interesting to see what she says. I would’ve had to stop the patches anyway because of the severity of the skin reactions :( I really really hope you start to feel better soon. I am beyond fed up with all this as I am sure you are too. Sending love and empathy x
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Lilith… Felt exactly like you did on the Estradot. It’s even worse at night wake up with a jolt pounding heart horrible anxiety sweats and shakes then can’t go back to sleep at all ….yesterday was so bad I’d had enough I just couldn’t function plus the fact unfortunately I have started reacting to the glue in the patches with horrible big red itchy weals underneath where they were. AnywayI couldn’t hack it anymore so I ripped off the patches and went back onto Lenzetto 12 hours after removing the patches. The patches to me seem an awful lot stronger and I felt constantly wired , jittery and headachey plus very low mood. It’s so difficult to know if it’s too much or too little :(
I already had a blood test booked tomorrow and thankfully a telephone consult with the meno consultant on Tuesday so it will be very interesting to see what she says. I would’ve had to stop the patches anyway because of the severity of the skin reactions :( I really really hope you start to feel better soon. I am beyond fed up with all this as I am sure you are too. Sending love and empathy x
Pippa52, thanks for your reply, just like you my mood the last few days has also been very low to the point I feel quite depressed. I'm tempted to cut 1/4 off the next patch on Tues morning to see if that makes any difference due to too much estrogen. But then today I've had bladder urgency which I know I definitely get on low estrogen. I feel in limbo as I don't know what to do. I'm even considering buying some of my old Estraderm patches online albeit quite expensive 😳
Pippa, I would be very interested to see what your estrogen levels are, and what your menopause specialist says, I wonder if our symptoms are due to low or high estrogen, your symptoms are certainly similar if not identical to mine. Is Lenzetto a gel ? See I tried Estrogel a year or so ago and I didn't absorb it at all.
Sending love and empathy right back at you 😘 x
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Lillith - you should treat the bladder symptoms with your local estrogen - Vagifem - which I think is what you mean when you say 'tiny little pills' you've been given but haven't used yet. Your entire body may not need or want more estrogen, but your bladder might.... If you treat with local estrogen down there, then you probably won't need to increase systemically.
20% of women on systemic HRT will also need local estrogen. IMO you can't judge how much systemic estrogen to use from your bladder or VA symptoms, you can treat those separately to the rest of the body. And it might be best to have bloods run to check levels as then you will know what that says in terms of too much or too little...
Pippa, please let me know how things go for you with your phone consult because I have similar symptoms to you - and just like you, last night was awful. (Maybe the heat makes it all worse?!) I'm also curious to know if you get different response on the spray compared to the patches (I'm on Estradot) - I've been assuming it's all estrogen/all the same, and would all cause me to react the same way but maybe that's the wrong assumption. So if you do better on Lenzetto, let me know!
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lilleth, yes of course will let you know what Meno lady says tomorrow. I had my blood test today so should get results in a couple of days apparently. I started back on Lenzetto which is a spray the day before yesterday. Felt awful yesterday and the night before but last night dare I say it I actually SLEPT. Yes I woke up with the panic jittery feelings a few time but last night no palpitations and today I am beginning to feel better. I won't celebrate yet though as have had good days before only to plunge back to feeling grotty but I certainly don't feel anywhere near as wired and jittery as I have been over the past 9 weeks or so. I started back on 2 sprays of Lenzetto which is less oestrogen dose than the patches I was on so maybe just maybe the dose was too high. I would have had to give up patches anyway due to the skin re-action I was getting. Will of course let you know what happens tomorrow. I was so like you feeling so wired and jittery on Estradot but have to say (so far) having changed to Lenzetto that is markedly subsiding. How are you feeling today? Did you cut off a bit of your patch? xxx
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joziel..............'Pippa, please let me know how things go for you with your phone consult because I have similar symptoms to you - and just like you, last night was awful. (Maybe the heat makes it all worse?!) I'm also curious to know if you get different response on the spray compared to the patches (I'm on Estradot) - I've been assuming it's all estrogen/all the same, and would all cause me to react the same way but maybe that's the wrong assumption. So if you do better on Lenzetto, let me know!'.. (sorry not sure how to do on here the paste option it doesn't seem to be the same as Whats App)
Hiya, - had my blood test this morning and yes of course will let you know how the consult goes tomorrow. I have most definitely started to improve since ripping off the patches. Yesterday I felt dreadful but last night I actually slept - yes I woke up a few times with the jittery panicky feeling but it didn't progress to palpitations. Today I have felt noticeably less jittery as the day has worn on, have more energy and just feel generally better than I have been for many weeks. I won't celebrate at all yet as have had better days before only too be plummeted back to feeling awful. I am on 2 sprays of Lenzetto (used to be on 1 and a quarter) which is quite a lot less than the Estradot patches I was on (same dose as you are) and I am seriously thinking that the dose was just too high for me. I have not had a headache today either which is a huge bonus to say the least. Was feeling so miserable and grotty recently on the patches but mood has lifted a lot today (probably actually getting some sleep helped a lot too) I did hear that the oestrogen (although the same drug as such) can be made from different things (mexican yams, soy etc etc so I guess that could have a bearing too.) Certainly with both Evorel and Estradot I re-acted badly to both and on varying doses as well yet after only 2 days on Lenzetto I have had an improvement. I'll get back to you tomorrow and let you know how things are progressing etc. How are you today? Is your diet helping? xxx
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Alas, no change with the night time symptoms on day 5 of low histamine diet so far. I am trying not to get too depressed by reminding myself of everything I will be able to eat again at the end of 2 weeks...
I do think I am coughing less after eating and my eye is watering less so it is very possible I have histamine intolerance to some degree and I'm going to make a few simple changes and add in a few supplements to help with that - but I don't think the solution is diet-based/improving the gut, I think it's down to estrogen causing the mast cells to degranulate and off-load their histamine (which is what it does).
So you are now on 2 sprays on Lenzetto? That would be the same as a 50 patch. And before I think you were on 62.5 on the patches? So you've reduced a step, but not a load. And when you had your bloods run, how much estrogen were you on then - was that back on the Lenzetto at 2 sprays? If you'd only just removed the patch, you might still have had circulating estrogen from that...?
Remind me again, why did you increase your estrogen on the patches up to 62.5 from 50 in the first place?
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joziel...... thanks so much for your update. Glad to hear that you feel that you feel your eyes are watering less and so hope that as you continue on the diet that maybe other things will improve but so sorry to hear that your night time symptoms have not changed as of yet :( Yes am on 2 sprays of Lenzetto. I removed the patch on Saturday morning and had the blood test yesterday and apparently 'estradiol has a short half-life (approximately one hour), serum concentrations of estradiol and estrone returned to baseline values within 24 hours following removal of the patch' so hopefully the patch dose would have cleared my system by Monday. Meno consultant was fab and wants me on 2 sprays for 4 - 6 weeks and then depending on how the symptoms are I can increase if needs be to 3 sprays if needed for symptom control. At 8 weeks she wants another blood test and will review things with me then.(my last blood test in March 2022 on Lenzetto one and half sprays was 140 previously on Lenzetto in Oct 2021 it had been 243 which is the level she would like me to get nearer to) For some reason I really felt the patches gave me a real whallop of a dose particularly on the next day after a patch change but then ran out quickly on the 3rd day - very strange. I haven't had that effect on Lenzetto either now or before so maybe for me the spray is a better form of delivery - everyone absorbs it a different rate I guess. She has ordered me some Lenzetto as supplies are still short but thankfully I have enough to last for a while. I was told to start on 50 on the patches and work slowly up to 75 which was what I was doing but with the exception of a few better days I was feeling worse and worse and the skin re-actions were the final straw as they were big red weals very hive like. I know its the same drug i.e. estradiol hemihydrate but she did say too that different HRT is made from different ingredients so I suspect that also has a bearing on how they are absorbed or how they work in different people. Just feel relieved having talked to her to have a plan in place. I did sleep better again last night too and no fast heartbeats but I won't hold my breath until several months down the line. She did also say that oestrogen receptors take a while to calm down when swopping treatments and levels of course. Hope so much you can get some more positive results from your diet I think you are being amazing trying it so at the very least even if it doesn't help you can rule diet out as a treatment. xxx
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lillith
Pippa, please let me know how things go for you with your phone consult because I have similar symptoms to you - and just like you, last night was awful. (Maybe the heat makes it all worse?!) I'm also curious to know if you get different response on the spray compared to the patches (I'm on Estradot) - I've been assuming it's all estrogen/all the same, and would all cause me to react the same way but maybe that's the wrong assumption. So if you do better on Lenzetto, let me know!
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Hi lillith - just to let you know I had the consult this morning and she was really great. Also had the blood test yesterday result will come back in a couple of days. She has told me to stay on 2 sprays of Lenzetto for 4 - 6 weeks and then depending on symptom control and how I am feeling I can go up to 3 sprays if needed and than at 8 weeks she wants another blood test and will review me again. For me the patches seemed to give me a real whallop of a dose the day after and then the next day felt as though it was running out - really strange. I also felt really unwell on them pretty much most of the time and the longer I was on them the more down plus the nights were really horrible with the very fast heartbeat episodes. I have not had them so far on the Lenzetto even though it is a lower dose than what I was on with the patches. I have also slept the last 2 nights with no fast heartbeats but won't hold my breath until several months in this time! It is of course early days but so far so good. She said it takes a good while for oestrogen receptors in the body to calm down after dose or different treatments have been changed. I was on Lenzetto previously but had to swop to the patches when it became unavailable. Clearly I was then on too low a dose of Lenzetto as only 1 and half sprays and now on 2 and possibly up to 3 at some point if needed. I certainly feel calmer and headache much less severe plus more energy but time will tell. I do like the delivery of Lenzetto it's really easy to apply. How are you feeling today? xxxx
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Thanks for the update Pippa, that is all such useful info - especially about the patches giving you a lot at the start and then wearing off. I've heard that from other people as well.
How much into menopause are you, by the way? I am just wondering if my previous 233nmol on the 50 patch would be okay after all. But perhaps you are much older than me (I'm 44yo), and that's why your doctor thinks that is okay...? I think younger women need more estrogen and until 51 I should get something like what I'd be getting from my own body. Which is why reducing patches worries me. ::)
And do you need to rub the Lenzetto in, or do you just spray it on your arm with the funnel thing and that's it? Because I think I'd prefer that over rubbing Oestrogel everywhere.
So just to check, you are now on a higher dose of Lenzetto than you've ever taken before (although only 2 sprays) and feeling better? And you didn't try reducing the 62.5 patch to 50 patch? Because of the skin irritation, you just ditched the patches?
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Just been reading your updates ladies.
Sunday night I had another terrible night, had a headache through the night, neck tense and painful and my eyeballs hurt. I did check my blood pressure which was fine. Just couldn't sleep again. So anyway yesterday I got my daughter to help cut off part of the patch that I was wearing, peeled 1/4 of it and cut it off. I did manage some sleep and my headache definitely wasn't so severe. Today I feel more ' normal' and not low like the last few days.
So today was patch change day and I have cut 1/4 off this one, let's see what happens !
Pippa52, that's great that you are improving on the Lenzetto estrogen. I curious to find out what your estrogen levels are. I'm convinced now that Estradot is stronger or I'm absorbing more of it than my old patch.
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Lillith - you should treat the bladder symptoms with your local estrogen - Vagifem - which I think is what you mean when you say 'tiny little pills' you've been given but haven't used yet. Your entire body may not need or want more estrogen, but your bladder might.... If you treat with local estrogen down there, then you probably won't need to increase systemically.
20% of women on systemic HRT will also need local estrogen. IMO you can't judge how much systemic estrogen to use from your bladder or VA symptoms, you can treat those separately to the rest of the body. And it might be best to have bloods run to check levels as then you will know what that says in terms of too much or too little...
Pippa, please let me know how things go for you with your phone consult because I have similar symptoms to you - and just like you, last night was awful. (Maybe the heat makes it all worse?!) I'm also curious to know if you get different response on the spray compared to the patches (I'm on Estradot) - I've been assuming it's all estrogen/all the same, and would all cause me to react the same way but maybe that's the wrong assumption. So if you do better on Lenzetto, let me know!
Joziel, yes it's like vagifem, but a different make. I only had bladder symptoms the one day then it disappeared. The more I research the more I think Estradot is stronger and maybe better absorption than my old patch, same with Evorel, I had horrific migraines daily with that patch, I felt wired like I'd drank 30 strong coffee's
It's certainly a minefield all of this 😞
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Hi joziel
I am a lot older than you - positively ancient at 69 ;D Had a surgical menopause at 42 and have been on Oestrogel for all those years until last year. So yes I will need much less of an oestrogen level than you (Meno consultant says to aim for around or near 240 for my age).
No you don't need to rub Lenzetto in you just spray it on your inner forearm and it literarily dries in under 2 mins... could not be easier to use. You are not supposed to shower or swim for an hour after applying otherwise you forget it's been put there. It does say not to apply sun cream just after it either.
I was on the 50 patch and was advised to work my way up to a 75 slowly which is what I was doing but for me personally I think I must have absorbed from the patch very fast as I got a real kick the next day and felt very OTT all day as well as unwell but the following day came down with a bump and felt grotty too. Like you the nights were beyond horrendous and I got to the state of dreading going to bed however tired I was. I did try to leave the patch on for 4 days once but that really did not work for me. I came off the patches because a) I honestly felt so ill on them any type of better day was rare and never lasted and b) yes I got a very severe skin re-action/hives itching etc and red weals. I suffer from dermatitis and mild eczema anyway and my skin decided to seriously protest against the adhesive. I had to apply some hydrocortisone ointment for a couple of days to take down the re-action. Day 4 today on Lenzetto and a mild headache only and slightly jittery but nothing like I was and so far (fingers crossed) no fast heartbeats. Yes 2 sprays is half a spray higher than I was on before. Early days so will wait till the 4 - 6 weeks point before I can be more sure that Lenzetto will work well for me. My body needs time to level out! How are you feeling today? Hope so much things are starting to improve for you xx
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lillith - I'm so sorry you had such a rough time I really feel you pain and nigh times are just the worse as well - they seem endless sometimes when you are feeling that rotten. I hope so so much that cutting a quarter off your patch will really help you start to feel better.
I totally agree with you I think Estradot is stronger (its definitely stronger than the Lenzetto) either that or having a patch on makes absorption better maybe? I will let you know what my blood test comes back at but am expecting it to be way off what it should be having just swopped over to Lenzetto but the consultant wanted to check it and then wants another one 8 weeks in to see if things are getting to a better level and symptoms are subsiding - well I can but dream!!! How are you feeling today? xx
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lillith - I'm so sorry you had such a rough time I really feel you pain and nigh times are just the worse as well - they seem endless sometimes when you are feeling that rotten. I hope so so much that cutting a quarter off your patch will really help you start to feel better.
I totally agree with you I think Estradot is stronger (its definitely stronger than the Lenzetto) either that or having a patch on makes absorption better maybe? I will let you know what my blood test comes back at but am expecting it to be way off what it should be having just swopped over to Lenzetto but the consultant wanted to check it and then wants another one 8 weeks in to see if things are getting to a better level and symptoms are subsiding - well I can but dream!!! How are you feeling today? xx
Pippa52, are you seeing a menopause specialist ? My Dr has never suggested any blood tests for estrogen levels. I know you can buy home tests and have them done privately, I'm tempted to do that. I've just been looking up the Louise Newson clinic, it's driveable distance from me, so expensive though 😞
I've felt pretty good today, I changed the patch an hour or so ago, I'm hoping I don't get a surge of estrogen and have a sleepless night 😐
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I have been switching between estrodot 75 and Estraderm 75 depending on what my pharmacy can get hold of. I really notice the difference although in theory they are the same. My inexpert take is that estrodot comes through more strongly, but I may be wrong.
OP if we could someone arrange to swap I’d happily send you my Estraderm in return for your estrodot.
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Well I cut 1/4 of the patch down late yesterday evening and it was unfortunately another night of headache (not as severe as full patch bit still painful), eye ache and insomnia. The change of patch must have caused a surge in estrogen, it's the only thing I can think of.
Yesterday was the only good day I had and that was because the patch had probably lost it's strength after 3.5 days. I checked Boots prescription checker and my old Estraderm patches still say out of stock 😭
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I have been switching between estrodot 75 and Estraderm 75 depending on what my pharmacy can get hold of. I really notice the difference although in theory they are the same. My inexpert take is that estrodot comes through more strongly, but I may be wrong.
OP if we could someone arrange to swap I’d happily send you my Estraderm in return for your estrodot.
Statrbaby, what symptoms have you had to make you think Estradot estrogen comes through more strongly ? I think you are totally correct in saying that.
Can you still get Estraderm from your pharmacy ? I'll send you a private message.
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Well it gives me hope that I could ask to try the spray or gel….
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Lililith yes I am seeing a meno consultant …. Completely agree it is expensive but I got to the end of my tether getting nowhere last year. I am not sure where you live … it’s a telephone consultation I have but it’s very thorough and she sends me to a clinic to have the blood tests done. Hand on heart it’s the best thing I’ve ever done going to her because I was just completely lost as to what to do before. That is good to know that Dr Newson‘s clinic isn’t too far from you at least it does give you an option. Yes I completely agree going private is expensive but to be honest I think I’d be in a far worse position now if I hadn’t. The consultant is really lovely easy to talk to very supportive and of course incredibly knowledgeable.
When I do get on an even keel again I will revert to the NHS. I’m so glad to hear you’re feeling a bit better today fingers tightly crossed that continues. The cut down in the amount of oestrogen I’m on certainly hit me last night which I expected to happen at some point so awoke to a fast heartbeat and feel a bit woozy this morning but still better than I was on the patches. I fully expect it to take quite a while to level up because I’ve had to change treatments three times in the last three months. She explained that the oestrogen receptors in our body take a while to calm down and level out it’s not an instant fix overnight which I know we all knew but it was just reassuring to hear her say it again. Here’s hoping you have a much better day with your slight reduction in dose it’s amazing how little reduction can make such a difference xxxx
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Lililith yes I am seeing a meno consultant …. Completely agree it is expensive but I got to the end of my tether getting nowhere last year. I am not sure where you live … it’s a telephone consultation I have but it’s very thorough and she sends me to a clinic to have the blood tests done. Hand on heart it’s the best thing I’ve ever done going to her because I was just completely lost as to what to do before. That is good to know that Dr Newson‘s clinic isn’t too far from you at least it does give you an option. Yes I completely agree going private is expensive but to be honest I think I’d be in a far worse position now if I hadn’t. The consultant is really lovely easy to talk to very supportive and of course incredibly knowledgeable.
When I do get on an even keel again I will revert to the NHS. I’m so glad to hear you’re feeling a bit better today fingers tightly crossed that continues. The cut down in the amount of oestrogen I’m on certainly hit me last night which I expected to happen at some point so awoke to a fast heartbeat and feel a bit woozy this morning but still better than I was on the patches. I fully expect it to take quite a while to level up because I’ve had to change treatments three times in the last three months. She explained that the oestrogen receptors in our body take a while to calm down and level out it’s not an instant fix overnight which I know we all knew but it was just reassuring to hear her say it again. Here’s hoping you have a much better day with your slight reduction in dose it’s amazing how little reduction can make such a difference xxxx
Pippa52 I'm definitely not feeling better with patch reduction, just had to take pain killers. You must have missed my earlier post. I'm back to migraine again last night and today 😭
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Lilith….. oh noooo I’m so sorry you are still feeling rotten. It just seems never ending at the moment doesn’t it and I don’t think this heat is helping either :(
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Lilith….. oh noooo I’m so sorry you are still feeling rotten. It just seems never ending at the moment doesn’t it and I don’t think this heat is helping either :(
Pippa52, the heat definitely isn't helping, I ripped the patch off earlier. I rang my chemist and they have 2 boxes of my patches, so been on phone to Dr, they're sending the prescription over. I'm in bed now with pounding migraine 😭
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Lilith … Poor you re the migraine they are truly grotty. I am so so pleased for you that they have some of your patches in stock (estraderm?) what a huge relief for you. Think you did absolutely the right thing ripping off the patch you had on. I’m really relieved to be off Estradot too. They suit loads of people I know which is great but sadly both Evorel and Estradot made me really unwell. So so happy for you that you can go back on your original patches. :) Hope so much your migraine starts to go very soon xxx
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Lilith … Poor you re the migraine they are truly grotty. I am so so pleased for you that they have some of your patches in stock (estraderm?) what a huge relief for you. Think you did absolutely the right thing ripping off the patch you had on. I’m really relieved to be off Estradot too. They suit loads of people I know which is great but sadly both Evorel and Estradot made me really unwell. So so happy for you that you can go back on your original patches. :) Hope so much your migraine starts to go very soon xxx
Thankyou Pippa52 for your kind words, my migraine has nearly completely eased, just shows it was the Estradot causing it. Such a shame as so many people rave about them, I had such high hopes !
I guess if my Estraderm ever stop working I have the option of trying the Lenzetto spray like you are on ☺️
I think I might have a few days break from the patches for now, I feel reluctant to even put mine on after more than 2 weeks of bad heads 😭
How are you feeling today Pippa back on your Lenzetto spray ?
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We are all having a crap time of it at the moment ;D :'(
Lillith, I'm glad the migraine is easing. Do you think it could be the soy or whatever the patch is made from or the adhesive or whatever, which caused the migraine? Logic suggests it must be some extra ingredient thing if it's not estrogen itself...?
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We are all having a crap time of it at the moment ;D :'(
Lillith, I'm glad the migraine is easing. Do you think it could be the soy or whatever the patch is made from or the adhesive or whatever, which caused the migraine? Logic suggests it must be some extra ingredient thing if it's not estrogen itself...?
Hugs Joziel, yes we are all having a rough time. 😭
I'm really not sure what has caused all the migraines, Evorels estrogen is made from wild Yams, Estradot is soy, so both different, both caused migraine. I cannot find what Estraderm is made from.
I think it must be the adhesive delivery method, they all have different ingredients, Estradot is small so must be a faster delivery of estrogen, Estraderm is massive so slower delivery but over a larger area.
I'm patch free tonight and feel ok so far 😳 migraine nearly gone now.
How are you feeling Joziel ?
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lillith - again sooo pleased you have sourced your original HRT. It really does prove that what suits one person doesn't suit another so thank goodness there is a choice of HRT out there. I re-acted so similarly to you with both Evorel and Estradot and it made me feel really ill and really down mood wise too. Yesterday I felt quite shaky and very tired for most of the day but picked up in the evening. Last night I woke up - panic feelings much less and no fast heartbeat (but I did have them the night before a bit) but managed to get back to sleep. I don't feel at all down any more which is such a relief but fully realise that it is going to take at the very least several weeks to hopefully get back to feeling considerably better but feel very positive about progress so far. Are you going to start your patches straight away or wait to let your system clear a bit first? Either way fingers tightly crossed for you that you start to improve soon. xxx
joziel - when I was talking to the meno consultant she said the adhesive in Evorel and Estradot were completely different yet I re-acted to both although the Estradot re-action was a lot worse. Evorel gave me the worse migraines I have ever had in fact with one my GP asked to see me after I got really scary pixalated vision and literally could not see. When I ripped the patches off both times the migraines went within hours just like it has for lillith. For me I think the uptake of the dose was too much at all strengths because I got such a zap of oestrogen after changing the patches and that set the scene. Bearing in mind I started off on a 25 patch I think it was the delivery method that didn't suit me not the dose. I was fine for over 20 years on Oestrogel no problem at all till they changed the formula slightly to estradio hemihydrate which I now realise is slightly weaker than estradiol 17b I started having problems and then it became unavailable anyway. Like I said to lillith thank goodness there is a choice of HRT so what doesn't suit one person does suit another. It really is a horrible journey for us all right now but am praying there is light at the end of the tunnel for all of us soon. How are you feeling today? xxx
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Very interesting! If I exhaust everything to try, I might ask to try the spray. I'm hoping it is back and available by then!!
I had a really good night after switching to the 50 patch first thing that morning, and starting zinc and quercetin. But things weren't totally normal. I still was a bit throbby, but only slightly, and I still woke up at 6am like that was time to get up. But I slept like a log from 11.30pm till 6am, which is a massive improvement. (6am still a bit early and not normal wake up time.)
I just wish that all traces of this would totally go(!) - the throbby thing and the sleep issues. I am extremely reluctant to reduce estrogen down more. So will stick at this level now and the next thing would be to make the progesterone change I am supposed to be trialling at the moment, which is doubling the utrogestan and stopping desogestrel. That might help things even further - if only it is enough to also keep the endo away.
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joziel - so so pleased you had a better night that is great news. xxxx
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lillith - again sooo pleased you have sourced your original HRT. It really does prove that what suits one person doesn't suit another so thank goodness there is a choice of HRT out there. I re-acted so similarly to you with both Evorel and Estradot and it made me feel really ill and really down mood wise too. Yesterday I felt quite shaky and very tired for most of the day but picked up in the evening. Last night I woke up - panic feelings much less and no fast heartbeat (but I did have them the night before a bit) but managed to get back to sleep. I don't feel at all down any more which is such a relief but fully realise that it is going to take at the very least several weeks to hopefully get back to feeling considerably better but feel very positive about progress so far. Are you going to start your patches straight away or wait to let your system clear a bit first? Either way fingers tightly crossed for you that you start to improve soon. xxx
joziel - when I was talking to the meno consultant she said the adhesive in Evorel and Estradot were completely different yet I re-acted to both although the Estradot re-action was a lot worse. Evorel gave me the worse migraines I have ever had in fact with one my GP asked to see me after I got really scary pixalated vision and literally could not see. When I ripped the patches off both times the migraines went within hours just like it has for lillith. For me I think the uptake of the dose was too much at all strengths because I got such a zap of oestrogen after changing the patches and that set the scene. Bearing in mind I started off on a 25 patch I think it was the delivery method that didn't suit me not the dose. I was fine for over 20 years on Oestrogel no problem at all till they changed the formula slightly to estradio hemihydrate which I now realise is slightly weaker than estradiol 17b I started having problems and then it became unavailable anyway. Like I said to lillith thank goodness there is a choice of HRT so what doesn't suit one person does suit another. It really is a horrible journey for us all right now but am praying there is light at the end of the tunnel for all of us soon. How are you feeling today? xxx
Pippa52, same as you, I found the Evorel gave me much worse migraines than Estradot, there was no let up, pain was all day and night, the Estradot was migraine at night, except for the day I ripped it off I had a bad head all day too. I wonder if I had cut a tiny bit of the patch off and started from scratch building it up whether I may have tolerated it. Who knows, I certainly wasn't prepared to try it after 2 weeks of constant migraines 😭
I haven't yet put my original patch Estraderm on yet as I'm holding out for tomorrow which is my usual patch change day. I am still migraine free, and feel ok mood wise, only thing is I've noticed my bladder is being affected, I'm weeing more and smaller amount, more urgency to go, I know for a fact I get this when my estrogen drops. Roll on tomorrow, patch back on !
Glad you seem to be improving Pippa, any news on your blood results yet ? I might do a private at home estrogen test. Did one years ago, my estrogen on patches was 210, not sure if that's ok, they said it was normal for someone on HRT. Think my dose was mx50 back then.
Joziel that's great that you slept well. My sleep is horrendous. What patches are you on ?
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I'm on Estradot 50 now. (Was on 62.5 but have taken that extra bit off now.)
Have you thought about using some local estrogen to help with the bladder urgency? If you want to hold off using systemic estrogen longer, you might find some local Vagifem helps there.
My estrogen was 233nmol on the 50 patch. I think this is pretty normal. What a desirable level is really depends on who you ask. Some people say it should all be guided by symptoms only and there is no minimum blood results. Other doctors want to see specific levels for optimal bone protection. I tried to do some research into this and there is actually a lot of variability in terms of what the desirable amount is, with some doctors saying that even tiny low doses are effective and others saying 400nmol is needed. The best I could find was this:
"The lowest dosage of patch (0.025mg/day) produced a mean oestradiol level of 140 pmol/L and was associated with substantial bone loss. With a mid- dosage patch (0.05 mg/day) the mean oestradiol level observed was 227 pmol/L and bone loss was prevented at this dose. Optimal results were achieved with the patch delivering 0.1mg oestradiol/day. Accretion of bone was observed at this highest dose when mean oestradiol levels of 400pmol/L were observed (see Table 5)." https://journals.sagepub.com/doi/pdf/10.1258/0004563021902107
So if you can be around 230nmol, you will maintain bone density - not gain it, not lose it. If you can get higher up to 400nmol, you will actually gain bone density.
I'm hoping that just maintaining it is enough for me, seeing I've started HRT pretty early in peri-menopause. Because I don't think I can get up to the dizzying heights of 400 without being taken to A&E on a stretcher at the rate I'm going ;D ;D I really hope I don't need to reduce further and can now stabilise at 50 patch....
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OP afraid my settings mean I can read but not reply to your PMs. If you can let me know via PM how else to contact you that would be great. I have three packs of extraderm mx75.
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Pippa about Lenzetto… you might find this thread interesting: https://www.reddit.com/r/estrogel/comments/gt6b3l/plan_c_multiple_doses_of_lenzetto_spray_do_not/?utm_source=share&utm_medium=ios_app&utm_name=iossmf
Basically the serum estrogen levels didn’t increase much between 2-3 sprays. The increase isn’t in proportion to the increase of dose. 🤔
I had a similar night last night to the night before. I am now sleeping okay again until 6am when I wake throbbing. This is how things were before at 50. I don’t want to reduce further. Arg. 🤯
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joziel - that's really interesting about the Lenzetto and would explain why the meno consultant said when I go up to 3 doses to do 2 sprays on one inner arm and the third on the innner thigh and then the next day alternate both sites. It would make sense not to have all the 3 doses in one place and to spread the area around. Thanks so much for the info though. I find for me it takes a week before any dose change kicks in totally and today on day 6 not feeling too wonderful first thing in the morning very shaky but no fast heartbeat as of yet. I am sticking rigidly to 2 sprays for a minimum of 4 - 6 weeks to level out but I can certainly tell I'm on a lower dose feel very achey but no migraine as of yet which is a huge bonus. Hope so much you improve on your lower dose. Thanks again so much for the info regarding Lenzetto it makes perfect sense. xx
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From that thread, it sounds like one reason might be that the skin can only absorb a certain amount at once (or something) - some people suggested dividing the dose morning and evening, to better absorb it. Maybe you could try that...
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Not good today ladies, had a bad head through the night and today, that's without a patch.
I put half an Estraderm patch on a couple of hours ago and still got a bad head 😥
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joziel - thanks so much and yes I agree that could be a good plan to try putting half a dose in morning and other half in evening I will see how I get on over the next week or so as today has progressed not so good as am feeling very washed out and wobbly but was expecting a re-action around the one week mark which it is today. The heat really is not helping and I am dreading next week with the forecast saying temperature could be up to 40 degrees :( FYI This is the instructions the meno consultant sent me with the Lenzetto prescription
''LENZETTO TRANSDERMAL SPRAY
The spray should be applied to the inner forearm skin between the wrist and the elbow using the skin which is generally paler in colour and is rarely exposed to sunlight. Please leave the spray to dry and do not attempt to rub it in.
Both arms should be used on an alternating basis to minimise the risk of skin reaction. Avoid applying the skin too close to the wrist area as this is usually too narrow to achieve good contact.
Skin reactions are extremely rare and are usually due to the alcohol content in the spray – please report any adverse reaction to the clinic team.
Where patients are on higher doses, e.g., 5-6 sprays per day, then the inner thighs can also be used as an alternative to the inner arm using the same application technique.
It is imperative that each spray is marked off on the chart which you will find on the Lenzetto carton. The standard Lenzetto bottle contains only 56 full strength sprays, and the bottle should be disposed of after this, even though some fluid may remain.
Consistent application ideally at the same time every day is important to achieve the best result from this medication. The spray must be kept dry and out of sunlight for a full hour following application and, as such, it is probably sensible to apply it in the evening rather than the morning, although as long as you are consistent and follow the basic rules, please feel free to apply the spray at the time of day which suits you best.''
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lillith - so very sorry to hear you are not having a good day. Ditto with me as the day has worn on not feeling great but did expect a blip one week into starting back on Lenzetto as it seems to take about a week for the full effects of the dose and medication change. Do hope you start to pick up very soon xx
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joziel and lillith
FYI just had my blood test results. They are the lowest they have ever been which would explain why I am feeling so rubbish as it clearly plummeted down after stopping patches. She did say Lenzetto would not have had enough time to kick in after only 3 days and I knew it would drop but its only 91pmol/L!! It was 240pmol last October. Have emailed the clinic and ask them should I increase the dose now rather than wait 4 - 6 weeks as really can't deal with all those more weeks of feeling like I do today. However guess they may want me to level out first before going up but I can but ask. Sheeeesh seems never ending we really are all having a tough time at the moment and as I said before the heat really is not helping xx
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joziel and lillith
FYI just had my blood test results. They are the lowest they have ever been which would explain why I am feeling so rubbish as it clearly plummeted down after stopping patches. She did say Lenzetto would not have had enough time to kick in after only 3 days and I knew it would drop but its only 91pmol/L!! It was 240pmol last October. Have emailed the clinic and ask them should I increase the dose now rather than wait 4 - 6 weeks as really can't deal with all those more weeks of feeling like I do today. However guess they may want me to level out first before going up but I can but ask. Sheeeesh seems never ending we really are all having a tough time at the moment and as I said before the heat really is not helping xx
Hi Pippa52, bless you, I hope you start improving soon. That is quite a low estrogen level 😞 hopefully the numbers will increase now you are on the spray.
My migraine is easing off now, I'm really fed up of all this 😥 I'm dreading this heat over the next few days as I don't cope well, and if I have a bad head on top of that I don't know what I will do.
Pippa52, did you have to do your blood test on a specific day of your cycle ? I'm thinking of doing a home test and as I still have a cycle as on sequential HRT wonder which time is best to get a base level ? I'm thinking on or near period ?
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I'm on Estradot 50 now. (Was on 62.5 but have taken that extra bit off now.)
Have you thought about using some local estrogen to help with the bladder urgency? If you want to hold off using systemic estrogen longer, you might find some local Vagifem helps there.
My estrogen was 233nmol on the 50 patch. I think this is pretty normal. What a desirable level is really depends on who you ask. Some people say it should all be guided by symptoms only and there is no minimum blood results. Other doctors want to see specific levels for optimal bone protection. I tried to do some research into this and there is actually a lot of variability in terms of what the desirable amount is, with some doctors saying that even tiny low doses are effective and others saying 400nmol is needed. The best I could find was this:
"The lowest dosage of patch (0.025mg/day) produced a mean oestradiol level of 140 pmol/L and was associated with substantial bone loss. With a mid- dosage patch (0.05 mg/day) the mean oestradiol level observed was 227 pmol/L and bone loss was prevented at this dose. Optimal results were achieved with the patch delivering 0.1mg oestradiol/day. Accretion of bone was observed at this highest dose when mean oestradiol levels of 400pmol/L were observed (see Table 5)." https://journals.sagepub.com/doi/pdf/10.1258/0004563021902107
So if you can be around 230nmol, you will maintain bone density - not gain it, not lose it. If you can get higher up to 400nmol, you will actually gain bone density.
I'm hoping that just maintaining it is enough for me, seeing I've started HRT pretty early in peri-menopause. Because I don't think I can get up to the dizzying heights of 400 without being taken to A&E on a stretcher at the rate I'm going ;D ;D I really hope I don't need to reduce further and can now stabilise at 50 patch....
Joziel, yes I have plenty of the vagifem pessaries and another make. I might start using them. I have cut my usual 75 patch in half today, so 37.5 and see how I go on that, I'm going to increase gradually after suffering all these migraines.
That's very interesting reading about the bone density and strength of patch, so 50 and 100 is ideal. The size of Estraderm patches I cannot imagine what 100 would be like, it would cover a whole butt cheek ! 😆
I hope you stabilize on your 50 patch now. It certainly is a rollercoaster ladies isn't it !
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I think it's more about the serum estrogen levels - those are just the average patches needed to get to those levels. Some women might need more or less patches to achieve those amounts, depends on how they absorb it.
Are you feeling better yet with the patch reduction? Half is quite a lot to reduce by. I've only been on 50 for a couple of days but already I'm thinking I want to reduce further to 37.5. I feel like I just need to find a level where I'm not getting these symptoms and stabilise there for a while. I can try to increase very gradually again in future but ultimately if I really can't increase, some estrogen has to be better than none.... I seem to think I was okay at 25mcg - I didn't try 37.5 on the way up.
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lillith - completely agree re the heat. I hate it when it's this hot especially when it gets really humid too. Dreading next week. I bought s small cool box to put my Lenzetto in as it is supposed to be stored no higher temperature than 25 and certainly don't want it degrading or whatever as it is still really hard to get hold of at the moment. There was another post on the site about the heat too. I had a hysterectomy plus ovaries out many years ago so it was ok for me to have the blood test at any point. I'm afraid I don't know the answer about when in your cycle it would need to be done but I am sure some of the other lovely ladies on here will know. I hope so much you start to really pick up now you are back on your proper patches. Lets hope the heat is not as bad as the weatherman are predicting!! :( xxx
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How are you feeling today ladies ? I got up with another bad head, not as severe as they have been. I still can't believe they are still continuing. Anyway by around 5pm it eased off after taking some paracetamol. Surely they will stop soon as Evorel and Estradot can't add till be in my system, maybe it's the drop in estrogen. 😐
I felt really exhausted today as well, literally found it hard to move. The heat doesn't help either !
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I used to get migraines till I started HRT. I think due to low estrogen. I didn’t have them from the 25 patch upwards though.
I doubled my utrogestan last night and had an especially bad night. Throbbing and pulsing with high blood pressure, fluttery heart… I don’t think the utrogestan caused it that was just a coincidence. But there was part of me secretly hoping that doubling it was going to solve everything immediately.
But instead it looks like I need to reduce estrogen down to 37.5 and try again. I don’t really have words for how exhausted I am as I haven’t slept properly due to this since I started hrt in march.
I now have a big question mark over whether I’m going to be able to take it at all and the alternative isn’t worth thinking about so I’m feeling a bit desperate 😞
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Aww joziel, sorry to hear you are feeling rubbish.
If it’s any consolation, my sleep has fallen of a cliff recently, down below feels a bit like sandpaper and just generally feeling a bit “ meh”.
What dose patch are you currently on?
I would love to come off HRT and sail through this frankly shite time of life, but sadly, the alternative is not worth contemplating.
Sleep is priority, but how? :-\
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I used to get migraines till I started HRT. I think due to low estrogen. I didn’t have them from the 25 patch upwards though.
I doubled my utrogestan last night and had an especially bad night. Throbbing and pulsing with high blood pressure, fluttery heart… I don’t think the utrogestan caused it that was just a coincidence. But there was part of me secretly hoping that doubling it was going to solve everything immediately.
But instead it looks like I need to reduce estrogen down to 37.5 and try again. I don’t really have words for how exhausted I am as I haven’t slept properly due to this since I started hrt in march.
I now have a big question mark over whether I’m going to be able to take it at all and the alternative isn’t worth thinking about so I’m feeling a bit desperate 😞
joziel so so sorry to hear your latest post I so feel for you, as you know we are in a similar type of boat. I see you are thinking of cutting down to 37.5 for your oestrogen. My meno consultant has put me on a lower dose since I came off the patches (2 sprays of Lenzetto). She told me I need to level out properly for at least 4 - 6 weeks at this lower dose. I had a blood test last week as you know and the level was really low at 91 so at least I know for sure now that in a few weeks time I need to up the dose to 3 sprays unless I start to feel perfectly ok in the meantime. I am then going to have another blood test at 8 weeks when more than likely I will have upped the dose to 3 sprays a few weeks before and then another consult with her. Since stopping patches I am feeling far less anxious, have only had one episode of fast heartbeat, am sleeping a bit better BUT I feel absolutely exhausted and it's a struggle to do anything much although obvs the heat does not help either. I do feel I am on the right medication for me personally and now it is a matter of time and getting the dose right. I did find the patches were too strong for me - even though I started on the 25 ones but it is such a personal thing as to which way of delivering the oestrogen suits each person. I think for me it was the high oestrogen in the patches that affected my sleep or rather lack of it. Don't get me wrong \i am far from right but my sleep is improving and I don't have such brain fog anymore either. I honestly think you will be able to take HRT its finding the right one that suits you. Sending hugs xx
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Aww joziel, sorry to hear you are feeling rubbish.
If it’s any consolation, my sleep has fallen of a cliff recently, down below feels a bit like sandpaper and just generally feeling a bit “ meh”.
What dose patch are you currently on?
I would love to come off HRT and sail through this frankly shite time of life, but sadly, the alternative is not worth contemplating.
Sleep is priority, but how? :-\
Nas so sorry to hear you are suffering too. This lack of sleep is just awful and not helped by the heat at the moment either. Sending love and empathy xxx
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How are you feeling today ladies ? I got up with another bad head, not as severe as they have been. I still can't believe they are still continuing. Anyway by around 5pm it eased off after taking some paracetamol. Surely they will stop soon as Evorel and Estradot can't add till be in my system, maybe it's the drop in estrogen. 😐
I felt really exhausted today as well, literally found it hard to move. The heat doesn't help either !
lillith ... how are you feeling today? Like you I feel totally and completely exhausted. If somebody told me there was a £50 note at the end of the road I'd say fine you have it I just don't have the energy. :( The Evorel should have gone from your system within 24 hours apparently but the meno consultant said to me it will take several weeks for things to even out and has put me on a low dose of Lenzetto as she wants me to level out for 4 - 6 weeks and if I don't feel much much better then to up the dose to 3 sprays and then have a blood test at 8 weeks and another consult. As you know my blood test was very low at 91 which was to be expected as I had only been back on low dose Lenzetto for 3 days and she wanted a base line level. She told me that this is not an instant fix and it takes time for the oestrogen to build up and to level out. It just seems totally endless but now you are back on your proper patches hopefully you will start to begin to feel better. Sending love and hugs and empathy xx
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Thanks Pippa x
I feel I’m heading back to square one again. So so tired and brain won’t switch off. Hyper sensitive to sounds too, is that a symptom?
Got a blood test booked for Thursday, so will see what that reveals.
Empathy and support for all who are suffering, plodding on etc etc... no energy today 😔
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Thanks Pippa x
I feel I’m heading back to square one again. So so tired and brain won’t switch off. Hyper sensitive to sounds too, is that a symptom?
Got a blood test booked for Thursday, so will see what that reveals.
Empathy and support for all who are suffering, plodding on etc etc... no energy today 😔
Bless you I totally relate to what you say. Ditto so so tired - my husband goes nuts as I keep asking him to turn down the TV! I think it seems to put all our systems on hyper alert. That's great you have a blood test booked as at least that will give you some clarity on where your levels are. xx
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Levels don't always help though, in fact sometimes there seems to be a conflict between what would be 'good' for blood results and how we feel, if that is possible?!
Sometimes I wonder if I should go get bloods redone. What if that 233nmol was just some freaky blip result and actually my results are really high... I've got a finger prick test Medichecks test to do, I was going to do it in about a month's time. Although on only a 50 patch I think it's pretty unlikely I have sky high estrogen really :o
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Levels don't always help though, in fact sometimes there seems to be a conflict between what would be 'good' for blood results and how we feel, if that is possible?!
Sometimes I wonder if I should go get bloods redone. What if that 233nmol was just some freaky blip result and actually my results are really high... I've got a finger prick test Medichecks test to do, I was going to do it in about a month's time. Although on only a 50 patch I think it's pretty unlikely I have sky high estrogen really :o
Totally agree it's symptom control that is the key not blood levels but I guess they do give a guide. 50 is certainly not a high dose but I just wondered as you are still peri and young that maybe you have quite a lot of circulating oestrogen yourself still so possibly might need less? Just a thought I am certainly no expert xx
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Yes Pippa, I'd wondered that before.
When the bloods were done, I wasn't on the desogestrel POP. The desogestrel POP keeps estrogen levels (from your ovaries) within the early follicular stage. So I'd have thought whatever estrogen I was producing would have reduced when I went back on the desogestrel. So if anything I'd expect my blood result to be worse/lower now, not better.
It's all a bit confusing. Now I am off the desogestrel again - and I'm on double the utrogestan instead. I've no idea what that is going to do in terms of controlling my ovaries... Does double utrogestan prevent ovulation? I've tried googling this and there doesn't seem to be anything about it. For endo prevention, it would ideally stop ovulation and keep the ovaries quiet. If it's not going to do that, it might not work for the endo and I might have to go back on desogestrel until menopause.
And then, when I was 21 and went on the combined pill, I had the same symptoms I have now. What does the combined pill do in terms of the estrogen produced by your ovaries? Do you just get the estrogen in the pill and none from your ovaries or both?! I don't know... it's all very confusing.
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Yes Pippa, I'd wondered that before.
When the bloods were done, I wasn't on the desogestrel POP. The desogestrel POP keeps estrogen levels (from your ovaries) within the early follicular stage. So I'd have thought whatever estrogen I was producing would have reduced when I went back on the desogestrel. So if anything I'd expect my blood result to be worse/lower now, not better.
It's all a bit confusing. Now I am off the desogestrel again - and I'm on double the utrogestan instead. I've no idea what that is going to do in terms of controlling my ovaries... Does double utrogestan prevent ovulation? I've tried googling this and there doesn't seem to be anything about it. For endo prevention, it would ideally stop ovulation and keep the ovaries quiet. If it's not going to do that, it might not work for the endo and I might have to go back on desogestrel until menopause.
And then, when I was 21 and went on the combined pill, I had the same symptoms I have now. What does the combined pill do in terms of the estrogen produced by your ovaries? Do you just get the estrogen in the pill and none from your ovaries or both?! I don't know... it's all very confusing.
joziel - do I remember right and that you are a patient of Dr Newson's clinic? Would they be able to guide and advise you as you are having to deal with so many things it must be a minefield for you. I really feel for you. I am having enough problems just dealing with one aspect i.e. the oestrogen levels but you have a much more complex issue of things to try and deal with. x
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A quick update. So far today this has been my most level day since I had to come off Lenzetto 3 months ago due to the shortages. I have now been back on it for 8 days. I had some better sleep last night and this evening am feeling less jittery and shaky as well as less fatigued. Evenings do tend to be my best time of day anyway but the whole day has been an improvement. Still a way to go but baby steps still going forward. Still no way right but feel today has been a definite improvement I just hope it continues. Hope everyone can manage to get some sleep tonight in this very hot weather. I am going to put my pillow case in the freezer for an hour before bedtime and also damp down a sheet and sleep under that so at least will feel cool enough to get off to sleep (hopefully!!) Hope everyone is coping ok xxx
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That’s good news Pippa, long may it last..🤞🤞🤞
It’s such a journey, I don’t know how we all manage sometimes!
Do you think lenzetto is the product for you? I wish it was for me as it’s so easy to apply isn’t it ? Just spray and go.
Joziel, you are young and juggling so many hormone balls..I take my hat off to you. One day at a time maybe...
As you say, not sure what the point of bloods are really. They give a figure, that’s it . Then where do we go if it’s ‘reasonable’ but we feel rubbish?
Hope we get some sleep tonight, I’m dreading work to be honest. Hot classes, hot kids and almost the end of term = everyone grumpy!
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I'm so glad to hear good news from one of us ;D I almost feel like it's my own ;D ;D That's v good Pippa.
Yes I'm at the Newson Clinic but the thing is that no one knows the answers to these things ;D ;D If you even read research papers they contradict each other ;D
Fingers crossed for tonight!
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I'm so glad to hear good news from one of us ;D I almost feel like it's my own ;D ;D That's v good Pippa.
Yes I'm at the Newson Clinic but the thing is that no one knows the answers to these things ;D ;D If you even read research papers they contradict each other ;D
Fingers crossed for tonight!
Ah bless you for those kind words. Actually although I slept not bad at all woke feeling quite dizzy today but don't think the heat helps. Bit of a headache etc but totally expect things to be up and down for quite a while yet. So sorry to hear just how difficult it is for you to get help and advice. You are dealing with a lot of things at once and I admire you so much for the way you are looking into everything and trying different ways and methods of trying to find an answer. You are so pro-active that I feel sure you will. Hope so much today is a better day for you. I do think listing things down daily is a really good way to see progress or otherwise too as we all do on here. It is such a help to all of us to talk to like minded ladies who are going through similar experiences as it can be a very lonely place to be otherwise. xxx
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Thanks Pippa, that is true. I had a tough day yesterday investigating the Lara Briden stuff: https://www.larabriden.com/
I convinced myself that I'd done a terrible thing taking POPs most of my life - because I stopped ovulation, which in turn (according to this way of looking at things) stops the high progesterone from the corpus luteum - which it is believed is important for future health.
Then I was full of 'it's too late now, I'm too old, I'm peri-menopausal, I can't make this stuff naturally' and a sense that I've done life 'wrong' on this one and it's too late to fix. :'( Of course it wasn't my fault, I didn't know better, but I was just filled with regret and sadness. I am probably just over-thinking things and being all 'menopause = everything is ending, it's all too late, life is over' ;D ;D ;D Sheesh I think we all need therapy when we get to menopause, to deal with this stuff ;D
Anyway, I took levonorgestrel from 21-30yo, mostly because I wanted an insurance policy for contraception. Then at 30yo, I tried to come off all hormones and be au naturel, it had never sat well with me to be on them. But then endo started to creep up on me. I refused to go back on POPs or the combined pill at first and battled it out, but by 35yo when I had my laparoscopy for it, I knew I had to - or potentially face repeated surgeries. So I reluctantly went on desogestrel. :'(
After a year, I felt like it was shutting me down too much (which is true, it turns out that it suppresses your estrogen levels more than levonorgestrel) so I tried to go back on the levonorgestrel - but I just bled for another entire year - and so went back on desogestrel. (I would have happily continued bleeding, I didn't have any pains - but my doctor had other ideas ;D ) And so then I just stayed on desogestrel for the last 9 years.
Which is all to say that, in my adult life, I've only not taken a POP of some kind from 30-35yo. And I never wanted it to be that way. It's just how it worked out. I am big into natural solutions and working with the body and if you'd told me this is how things would be when I was 21yo, I'd never have believed it. But I reckon there must be many other women on contraceptives most of their adult lives....!?
Anyway, now I don't know if this is partly why I'm finding it hard to adjust to increased estrogen. Because the desogestrel has kept it really low for so long. Anyway, no point being all woe is me about it now... Of course I also get worried about bone health and whether my bones are okay, to have had such reduced estrogen all my life. So then I went off reading research papers about POPs and bone density and it seems that they are deemed 'bone safe' even though the estrogen levels are kept low on them. Which isn't what the Lara Briden website implies - that terrifies you that you will inevitably lose bone density on them.
Today I am banning myself from researching this anymore after spending hours on it yesterday, with no ultimate conclusions, just wading through differing opinions and not knowing what to think. But I would say that if ALL THIS STUFF WAS ABOUT MEN'S HEALTH, there would be DEFINITIVE ANSWERS on it all by this point!!!!!
I had a good night last night, but it might be that I was just exhausted. I tend to have a couple of ultra rubbish nights and then a night when I sleep - we'll see if it continues. I still felt throbby and got the palps but I like to think they are decreasing.
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Hello ladies.
Joziel - Do you believe that your extensive use of birth control pills has meant that you are experiencing a particularly difficult menopause? Apologies if I have got that wrong however if so you might find my story helpful.
I am sixty five now and I had my last period twelve years ago. Two years prior to that I started getting
night sweats etc and for three years period free I managed my increasingly difficult symptoms. Eventually in 2013 I began using HRT and apart from a break in 2019 I have been taking it ever since.
In summary I think my menopause has been quite difficult and certainly worse than some friends of mine. I say all this because my use of the birth control pill was minimal. I didn't really start using it until my mid twenties and came off it to have my daughter when I was thirty two. I never went back on it and then had my son at thirty six and never used it again.
I conclude from all this that my horrible meno could not have been influenced by many years of taking the pill so perhaps the effects of taking it are not necessarily a bad thing.
I know what it is like to research yourself into an anxious state and you have my sympathy but it's worth noting that there are many stories out there and possibly many different outcomes as well.
Wishing you well.
K.
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Hi Kathleen, that's interesting. No, it's not so much that I'm having a difficult menopause due to using POPs so much (although I do think it has been difficult to adjust from the very low estrogen levels on POP to introducing a decent amount of estrogen suddenly with HRT - that is why it might have been extra difficult for me).
It's more that Lara Briden's theory is that we need to ovulate normally throughout most of our adult lives to have optimal health in the future and into old age. This means that our ovaries release optimal estrogen levels at ovulation and we get a huge load of progesterone after ovulation from the corpus luteum. If we stop ovulation with BCPs then we don't get all that, our own ovaries and hormones are suppressed (to a greater or lesser extent depending on what BCP we use) and we are getting the synthetic hormones from the BCPs instead.
Synthetic estrogen does have some health benefits and isn't too bad a thing, but synthetic progestins seem to have little benefits to them healthwise compared to natural progesterone - except they can do a great job at keeping the uterine lining thin. But progesterone (natural) does a lot more besides that....
But - I'm probably about to be peri, if I'm not already, so trying to get my endo-afflicted body to start ovulating again now for just a few years might just be more trouble than it's worth (and risk endo getting worse) so perhaps I am best just trying to use body identical HRT to get some hormones back now.
And also, not to forget that stopping ovulation through using BCPs massively reduces the risk of ovarian cancer. Which Lara Briden doesn't really address....
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joziel....I had endometriosis as well so I know only too well what it was like. Unfortunately with me it spread extensively all over my womb so I had to have a hysterectomy when I was 30. All went well until aged 42 it reared it's head again and affected my ovaries - I developed a 'chocolate cyst' and after struggling to control the pain and symptoms the consultant said I really need to have the op to remove my ovaries. Hence I have been on HRT since then (Oestrogel up until last year) I just wanted to tell you as I so understand what endo can be like :( How are you doing today? How did you manage with the heat? I have had a couple of not so good days and nights and am definitely feeling the lower dose now so trying to hang on in there for 2 more weeks as the Meno consultant told me to wait for 4 weeks till I increase it to 3 sprays of Lenzetto. Headaches, feeling a bit jittery, not sleeping so well, some flushes but thankfully no fast heart beats. Even like this I am definitely better than I was on the patches but have to say I am looking forward to being able to increase the dose as that will be the equivalent dose I was on all those years when I was on Oestrogel. Do hope you are starting to pick up? x
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lillith - - how are you doing? Hope so much you are improving x
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I have just heard back from the Meno specialist as she had asked for an update on my progress so had emailed her back. She wants me to increase to 3 sprays now rather than wait another few weeks so am quite relieved. Just hope the extra spray finally does the trick. Will start it this evening - fingers crossed but feel a bit optimistic as this is pretty much the equivalent of what I was on all those years with Oestrogel (just under 3 pumps) - time will tell x
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lillith - - how are you doing? Hope so much you are improving x
Hi Pippa52, sorry I've not updated in a while. All seems to be going ok, I'm still on half a 75 patch, so 37.5 and seem to be doing ok on it so far. The headaches have disappeared, mood is level. I was on 75 dose before the shortage of Estraderm, I think I'll stay on the 37.5 unless any symptoms come creeping back. I feel no different now to when I was on the higher dose, very weird ! 🤔
I'm glad to read you are improving and are able to increase your dose, fingers crossed you see good results ☺️
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Lillith, snap I'm also on 37.5 now.
Pippa, I didn't realise you had a history of endo. That sounds really difficult and more widespread than mine. Mine seemed to be what they call superficial, no adhesions, just a few patches of it at the laparoscopy and none on my ovaries. And it seems to respond well to suppression with progesterone.
I've done 3 nights at the new 37.5 dose. It's MUCH better. Although I still occasionally semi-wake, and in half sleep realise I feel a bit throbby, but make myself go back to sleep again and it seems to stop again. When I am throbbing(!), the entire mattress no longer seems to be moving ;D and it seems to be mainly in my hands that I feel it, and much much less than on higher doses. There has definitely been a massive improvement since reducing the estrogen dose. It's not 100% resolved and I'm just hoping it goes away as I don't want to reduce further.
I do feel like a bit of a "failure" :'( for not being able to tolerate a higher dose. I mean, if I was only 233nmol at 50 I don't really want to think about what I am at with a 37.5 patch. I don't understand why I can't tolerate a higher dose. The only thing I can randomly imagine is that I was on the desogestrel POP for 9 years which kept my estrogen levels very low. And so this is a big change.
And then I get very confused... Because I did some research (dangerous!), and I don't get this: Apparently POPs are bone-safe, including desogestrel and levonorgestrel which are the two I've been on. But the levels of estrogen they caused in women were around 50-170nmols. And there are some studies which claim that for HRT to protect bones, you need at least 250nmol to maintain bone density. (And 400nmols to improve it.) So how can the same estrogen levels be bone safe on POPs and cause bone loss on HRT?? It doesn't make any sense. Like so many things in women's health.
And then.... there are many other studies looking at low dose HRT which found that any dose at all, even very very low dose estrogen, protects bones. And then there is this whole discrepancy with the BMS saying you should just treat for symptoms and forget about serum estrogen and not even test for estrogen until someone wants over 100mcg patch for symptom control. And meanwhile other doctors trying to achieve certain minimum serum levels.
Really, to be on the safe side, I would like to be able to tolerate at least a 50 and be around 250nmol. But I just can't. So I feel like a failure. :(
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Lillith, snap I'm also on 37.5 now.
Pippa, I didn't realise you had a history of endo. That sounds really difficult and more widespread than mine. Mine seemed to be what they call superficial, no adhesions, just a few patches of it at the laparoscopy and none on my ovaries. And it seems to respond well to suppression with progesterone.
I've done 3 nights at the new 37.5 dose. It's MUCH better. Although I still occasionally semi-wake, and in half sleep realise I feel a bit throbby, but make myself go back to sleep again and it seems to stop again. When I am throbbing(!), the entire mattress no longer seems to be moving ;D and it seems to be mainly in my hands that I feel it, and much much less than on higher doses. There has definitely been a massive improvement since reducing the estrogen dose. It's not 100% resolved and I'm just hoping it goes away as I don't want to reduce further.
I do feel like a bit of a "failure" :'( for not being able to tolerate a higher dose. I mean, if I was only 233nmol at 50 I don't really want to think about what I am at with a 37.5 patch. I don't understand why I can't tolerate a higher dose. The only thing I can randomly imagine is that I was on the desogestrel POP for 9 years which kept my estrogen levels very low. And so this is a big change.
And then I get very confused... Because I did some research (dangerous!), and I don't get this: Apparently POPs are bone-safe, including desogestrel and levonorgestrel which are the two I've been on. But the levels of estrogen they caused in women were around 50-170nmols. And there are some studies which claim that for HRT to protect bones, you need at least 250nmol to maintain bone density. (And 400nmols to improve it.) So how can the same estrogen levels be bone safe on POPs and cause bone loss on HRT?? It doesn't make any sense. Like so many things in women's health.
And then.... there are many other studies looking at low dose HRT which found that any dose at all, even very very low dose estrogen, protects bones. And then there is this whole discrepancy with the BMS saying you should just treat for symptoms and forget about serum estrogen and not even test for estrogen until someone wants over 100mcg patch for symptom control. And meanwhile other doctors trying to achieve certain minimum serum levels.
Really, to be on the safe side, I would like to be able to tolerate at least a 50 and be around 250nmol. But I just can't. So I feel like a failure. :(
Joziel, have you ever tried the patch that I'm on, Estraderm ? I've had zero side effects on it even going up to 75 dose. I couldn't tolerate Evorel 75 or Estradot even when cut in half. It might be worth a try as I feel Estraderm is a lot more gentle than the others so you may be able to tolerate a higher dose of it ?
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That's interesting lillith. What were your symptoms when you tried the other patches? That's amazing you can go up to 75 on the Estraderm and not even half that on the others. Do you know if you're absorbing the Estraderm though? I'm not allergic to the patch, I don't have skin reactions or feel itchy or anything like that.
I will for sure check it out! Although currently seem to have a load of Estradots in the cupboard ;D
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Hi All
Under section 6 it has the ingredients of Estraderm
https://emc-prod-ukwest-wa.azurewebsites.net/emc/product/5839/pil
Doesn’t say if it’s made from soy or yams though.
X
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That's interesting lillith. What were your symptoms when you tried the other patches? That's amazing you can go up to 75 on the Estraderm and not even half that on the others. Do you know if you're absorbing the Estraderm though? I'm not allergic to the patch, I don't have skin reactions or feel itchy or anything like that.
I will for sure check it out! Although currently seem to have a load of Estradots in the cupboard ;D
Joziel, within a couple of days of Evorel I had horrendous migraines that lasted 12 days, my mood was horrible, I felt very low and depressed but jittery like I had to do something, also I had very bad neck pain like all muscles in my neck had tension, sleep was horrendous too, 2 hours a night. Then I switched to Estradot and still had migraine even on half dose. Within 2 days back on my Estraderm all symptoms had gone !
I had a blood test years ago after 6 months on Estraderm mx50 and my levels were 210, which I was told is normal for someone on HRT. I definitely absorb it as when I come off it I get horrific bladder urgency, so bad I couldn't leave the house ! 😳
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Hi All
Under section 6 it has the ingredients of Estraderm
https://emc-prod-ukwest-wa.azurewebsites.net/emc/product/5839/pil
Doesn’t say if it’s made from soy or yams though.
X
Thanks Marchlove, I can't open that link on my phone, it says Error 403-Forbidden ? 😞
I've tried researching what is in Estraderm but I can't find out either.
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lillith - - how are you doing? Hope so much you are improving x
Hi Pippa52, sorry I've not updated in a while. All seems to be going ok, I'm still on half a 75 patch, so 37.5 and seem to be doing ok on it so far. The headaches have disappeared, mood is level. I was on 75 dose before the shortage of Estraderm, I think I'll stay on the 37.5 unless any symptoms come creeping back. I feel no different now to when I was on the higher dose, very weird ! 🤔
I'm glad to read you are improving and are able to increase your dose, fingers crossed you see good results ☺️
lillith - so so pleased to hear you are feeling better. Hopefully that dose is the right one for you now. Great news that the lower dose seems to be working well for you :)
My first day on the higher dose and not feeling great rotten night bit spaced out and headachey and shaky but definitely less anxiety so that is definitely a bonus. I expected to not feel great today as any change is dose always hits me. Fingers crossed your feeling better remains xx
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Lillith, snap I'm also on 37.5 now.
Pippa, I didn't realise you had a history of endo. That sounds really difficult and more widespread than mine. Mine seemed to be what they call superficial, no adhesions, just a few patches of it at the laparoscopy and none on my ovaries. And it seems to respond well to suppression with progesterone.
I've done 3 nights at the new 37.5 dose. It's MUCH better. Although I still occasionally semi-wake, and in half sleep realise I feel a bit throbby, but make myself go back to sleep again and it seems to stop again. When I am throbbing(!), the entire mattress no longer seems to be moving ;D and it seems to be mainly in my hands that I feel it, and much much less than on higher doses. There has definitely been a massive improvement since reducing the estrogen dose. It's not 100% resolved and I'm just hoping it goes away as I don't want to reduce further.
I do feel like a bit of a "failure" :'( for not being able to tolerate a higher dose. I mean, if I was only 233nmol at 50 I don't really want to think about what I am at with a 37.5 patch. I don't understand why I can't tolerate a higher dose. The only thing I can randomly imagine is that I was on the desogestrel POP for 9 years which kept my estrogen levels very low. And so this is a big change.
And then I get very confused... Because I did some research (dangerous!), and I don't get this: Apparently POPs are bone-safe, including desogestrel and levonorgestrel which are the two I've been on. But the levels of estrogen they caused in women were around 50-170nmols. And there are some studies which claim that for HRT to protect bones, you need at least 250nmol to maintain bone density. (And 400nmols to improve it.) So how can the same estrogen levels be bone safe on POPs and cause bone loss on HRT?? It doesn't make any sense. Like so many things in women's health.
And then.... there are many other studies looking at low dose HRT which found that any dose at all, even very very low dose estrogen, protects bones. And then there is this whole discrepancy with the BMS saying you should just treat for symptoms and forget about serum estrogen and not even test for estrogen until someone wants over 100mcg patch for symptom control. And meanwhile other doctors trying to achieve certain minimum serum levels.
Really, to be on the safe side, I would like to be able to tolerate at least a 50 and be around 250nmol. But I just can't. So I feel like a failure. :(
joziel - no way are you a failure. Our bodies are all so different in the amount of oestrogen etc we need. Probably your own ovaries are still making quite a bit of oestrogen too maybe so that may possibly be why you need less from the patch? Our bodies are very clever and it may be that it's telling you that at this point you don't need the extra bit to take you up to a 50 patch? I certainly do feel a general improvement being on a lower dose as like you the higher doses really made me feel rotten and sleep became a distant memory!! Regarding bone strength have you had a dexa scan done at all? xx
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I’m too afraid to have a dexa ;D I’m already doing everything I can for my bones and I can’t increase estrogen so even if I got a bad result I’m not sure it would do anything except worry me.
I’m going to ask my Newson doctor about Estraderm - although it’s not listed on their drop down repeat prescription list. And it only comes in 50 and 100…
I don’t think my own ovaries are producing anything much because I have to suppress them to keep endo away. That’s why I was taking desogestrel and now double the utrogestan instead. All that should mean they’re not making much themselves. Even on 100mg utrogestan and no desogestrel I was only 233nmol on a 50 patch :(
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joziel ....- I totally hear you re the dexa scan To be honest they wanted me to have one but I declined. Like you I am doing all I can for my bones and I didn't particularly want another xray dose I've had enough in the past though various procedures. Ah understood also about your ovaries and suppressing them due to the endo. When I first got endo they gave me some horrendous injection which made me feel awful - can't remember what it was but I refused to have another one but I know it was to suppress my ovaries. I am so so glad that you are starting to feel better on the lower patch and also getting more sleep that is such a positive step forward. Great idea re Estraderm too it certainly seems to suit lillith :) . I actually just looked up what Lenzetto is made from and it is from yams but it is definitely weaker than the Evorel was. 3 sprays of Lenzetto is the same as two pumps of Oestrogel so I am apparently still on a lower dose than I was when I was on Oestrogel. I can only assume that for me Lenzetto seems to absorb better as my level on 3 pumps of Oestrogel was only 98 whereas with only one and a half sprays on Lenzetto last October it was 240.. xx
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Pippa that's great. If I did try something else, I might try the Lenzetto. I like that you don't have to rub it in.
I've ordered a skipping rope so I can try to do 5-10mins of skipping a day. I already work out 4x a week, but it's mainly free weights and strength work, it's not much cardio or impact stuff, so hopefully the skipping will help there. Then I've really done all I can in terms of lifestyle, diet and supplements and estrogen.
The injection they gave you was probably Zoladex or similar, a Gnrh agonist or whatever (can never remember how to spell that) which puts you into a temporary menopause. It's pretty hardcore. It really helps with endo but obviously has all these other side effects due to sudden lack of estrogen. Luckily I didn't need that, I was okay with the POP.
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I’m too afraid to have a dexa ;D I’m already doing everything I can for my bones and I can’t increase estrogen so even if I got a bad result I’m not sure it would do anything except worry me.
I’m going to ask my Newson doctor about Estraderm - although it’s not listed on their drop down repeat prescription list. And it only comes in 50 and 100…
I don’t think my own ovaries are producing anything much because I have to suppress them to keep endo away. That’s why I was taking desogestrel and now double the utrogestan instead. All that should mean they’re not making much themselves. Even on 100mg utrogestan and no desogestrel I was only 233nmol on a 50 patch :(
Joziel, Estraderm comes in mx25, mx50, mx75 and mx100.
They are bigger than the other patches and are renown for not sticking well, but mine stick like glue after washing area in warm shower with Simple soap, drying thoroughly then holding in place on butt cheek for 30 seconds. I wear them in hot baths, showers and they don't budge. ☺️
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Oh really, that’s good to know. When I googled it just came up with 50 and 100 but maybe that was old info. :)
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joziel - for your interest this is what the Meno consultant put in her letter to me...
''Unfortunately you were unable to get hold of Lenzetto due to the shortages and your GP switched you to Evorel 50 twice weekly. You have had some very unpleasant headaches since then and were concerned that the dose was too high, which is certainly a possibility as Lenzetto is generally a very low strength HRT which is one of the reasons I prefer it compared to transdermal patches and gel. I changed your medication to Estradot patches as Lenzetto remained unavailable - these are generally better tolerated that Evorel and Estradot has a patented and different hormonal delivery system with a better adhesive. At this stage it was all trial and error and my long term advice would be to get back onto Lenzetto in the future when supplies stabilise.''(** this was 6 weeks ago**) After my last consult with her 2 weeks ago she advised going back onto Lenzetto at 2 sprays but a few days ago with her permission I upped it to 3 sprays. Just thought the above might be of some interest to you should you ever decide to change delivery methods in the future. Hope so much you are continuing to feel better on your 37.5 dose xx
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Thanks Pippa. That's interesting about her preferring it because it's low dose. I'm not sure what that means ;D because you can of course make it high dose by doing more squirts or it, or even make patches lower dose by using smaller ones ;D
I'm doing okay. Nighttimes have got a lot better, in that when I wake up, I go back to sleep immediately - I'm not lying awake for hours. But I am still waking up a few times during the night. So it's much better but it's not like sleep used to be, pre-HRT. ??? I don't know if I should just accept this as the 'new norm' - after all, I am getting some sleep. :-\
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joziel - so glad to hear your sleep is improving. Just goes to show you were so right to lower the dose. Hopefully as time goes on it will continue to improve too. My is also slowly improving. Last night was a pretty reasonable night compared to past ones. Like you I wake up still several times but also now go back to sleep again reasonably quickly and so far no fast heartbeats. Here's hoping we are on the road at least to a gradual improvement xx
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Oh really, that’s good to know. When I googled it just came up with 50 and 100 but maybe that was old info. :)
Oh how odd, I've been getting the mx75 for a while now, I just cut it in half to get the 37.5. my Aunty is on the mx25 and has been for decades.
I'm glad both of you are improving on your new dose. Patch change tonight for me. I notice you both say you are sleeping better, well my sleep is always horrendous, some nights I only get 2-3 hours 😞 I wonder if my estrogen levels are just too low 🤔
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Personally I do better on a very low dose of estrogen. Every time I tried to increase over the years things got worse, not better.
This is not the same for everyone, probably all to do with genes, but finding your sweet spot is an art form I feel. X
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Oh really, that’s good to know. When I googled it just came up with 50 and 100 but maybe that was old info. :)
Oh how odd, I've been getting the mx75 for a while now, I just cut it in half to get the 37.5. my Aunty is on the mx25 and has been for decades.
I'm glad both of you are improving on your new dose. Patch change tonight for me. I notice you both say you are sleeping better, well my sleep is always horrendous, some nights I only get 2-3 hours 😞 I wonder if my estrogen levels are just too low 🤔
Hi lillith - so sorry to hear about your sleep. Really feel your pain as my sleep has been utter rubbish for some time. Never have been a great sleeper but lately it was awful so just hoping the improvement continues. Re your oestrogen levels I can't remember have you had any blood levels done? I know they are only a guide and symptoms are what count but it would I guess give you a baseline to work from. Having little sleep makes it so hard. Its like jet lag but without the nice part of a holiday :( Have to say I've not been too great today grotty headache but nowhere near as bad as they used to be on the other HRT xx
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Oh really, that’s good to know. When I googled it just came up with 50 and 100 but maybe that was old info. :)
Oh how odd, I've been getting the mx75 for a while now, I just cut it in half to get the 37.5. my Aunty is on the mx25 and has been for decades.
I'm glad both of you are improving on your new dose. Patch change tonight for me. I notice you both say you are sleeping better, well my sleep is always horrendous, some nights I only get 2-3 hours 😞 I wonder if my estrogen levels are just too low 🤔
Hi lillith - so sorry to hear about your sleep. Really feel your pain as my sleep has been utter rubbish for some time. Never have been a great sleeper but lately it was awful so just hoping the improvement continues. Re your oestrogen levels I can't remember have you had any blood levels done? I know they are only a guide and symptoms are what count but it would I guess give you a baseline to work from. Having little sleep makes it so hard. Its like jet lag but without the nice part of a holiday :( Have to say I've not been too great today grotty headache but nowhere near as bad as they used to be on the other HRT xx
Hi Pippa52, I had bloods done about a year and a half ago when I was on the mx50 patch, my levels were 210 which apparently is normal for someone on HRT. No idea what my levels are now, might be worth going for medichecks home test again as GP won't do it.
I hope your bad head improved. I've been getting really mild bad heads at night and feeling like my muscles in neck and face are tense at night. I've added another bit of my patch to bring it up to 50 this morning, see what happens tonight 😞
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Hi lillith112 so glad to hear that your bad heads are now milder and I hope so soon they start to fade completely. Hopefully increasing your dose as you have will help. Like you I increased my dose 6 days ago with Meno consultant's permission and was doing a bit better but yesterday, as always seems to happen with me, the effect of the larger dose kicked in and I felt like I had overdosed on caffeine all night but today it is more bearable and so far I have no headache etc so I will persevere feeling 'caffeinated' as am hoping it will calm down soon as my body adjusts. 3 sprays is still not a high dose (roughly the same as 2 pumps of Oestrogel I understand) and I certainly would not want to go any higher or otherwise all the other problems that too high a dose caused will come back. Finger crossed for you with you higher dose patch tonight xx
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Good luck Pippa, I know those higher dose feelings well :'(
I am still on 37.5. Overall, I'm doing much better but still happening some... I can be perfectly 100% normal and feeling fine all day, get into bed all sleepy and close my eyes to start to fall asleep - and my heart feels like it's beating harder than usual suddenly. I feel it beating lower down, sort of top of my belly rather than in my chest. And my fingers and feet get a bit pulse-y against the bed. And occasionally I get the jumping just as I'm falling asleep thing. What the heck is going on that this happens at night only... it is some primitive part of your brain for sure! But it is all a LOT less intense than at the higher dosages and I am even managing to sleep through it some nights and get good deep sleep on those nights.
I don't really want to reduce down to 25... I'm going to do a Medichecks estrogen test in a couple of weeks.
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Sooooooooooooooo...here I go again!! Did what advised i.e. went up to 3 sprays of Lenzetto - yesterday 6 days in felt like I had drunk a squillion cups of strong caffeinated coffee all day and then last night was beyond horrendous - fast heart beat of over 150 beats per minute which lasted about 4 mins but felt like 4 hours gulp then just could not sleep. So now its back down to a lower dose probably around 2 and a quarter sprays I have been advised. Sheeeesh will this ever ever end - am beyond fed up today feel completely spaced out and very shaky. However just like joziel it is totally clear I cannot take higher doses of oestrogen so now its a matter of lower dose but high enough to control symptoms. Roller coaster continues. :'( Hope everyone else is starting to feel a bit better? xxx
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Oh Pippa don't tell me that, you're supposed to tell me that Lenzetto fixes everything so I can have some hope ;D I just drafted a letter to email to my Newson GP to ask for some Lenzetto if things don't get better in a few weeks ;D
How do you do a quarter squirt of Lenzetto then? Doesn't it just do one pump per press, is it possible to be accurate with less than one pump doses?
How come your body tolerated this amount of estrogen relatively recently and now just can't? I know that I've had low estrogen for years because desogestrel suppresses it to around 250nmol or lower - and I've been on desogestrel about 8-9 years before HRT. So my theory for myself is that my body is no longer used to higher doses, a bit like a post-menopausal 70+ year old woman's wouldn't be. But it seems you've been on higher doses pretty recently??
Have you tried doing the whole dose in one go in the morning, with the hope that it wears off by night time, or are you getting symptoms throughout the whole day?
Whilst I am managing to get some decent sleep at the moment, I am still kinda throbbing and pulsing and palpating and I can't live like this long-term because it can't be good for me in other ways and I'd be afraid to! :o But I've only been at this level for just over a week and I feel like I need to demonstrate that I've given it a good go... To further confuse things, I'm getting skipped beat palpitations in the evenings now - which was one of my before-HRT symptoms - and some bits of thicker discharge which I think means that I need more vaginal estrogen. I can increase vaginal estrogen but can't do anything about the skipped beat palps... It seems that some parts of me want more estrogen and other parts want less ::)
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Sounds like we are still all struggling ladies 😞 my sleep at the moment is non existent, I feel absolutely terrible. I'm fatigued and feel quite low. I feel pangs of anxiety and keep feeling like I feel trapped and need to get out of my house, I'm constantly restless even though I've not slept 😳.
My patch is up to 50 now, I know it's early days but I feel rubbish !
Pippa52 I'm sorry to hear you have the caffeinated feeling, I get that a lot, it's vile. I think estrogen is liked with cortisol which would give the caffeinated feelings.
Joziel, I'm sorry to hear you are also struggling. I have been getting return of palpitations on the lower dose too.
I just wonder if I will ever feel normal again 😞
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Oh Pippa don't tell me that, you're supposed to tell me that Lenzetto fixes everything so I can have some hope ;D I just drafted a letter to email to my Newson GP to ask for some Lenzetto if things don't get better in a few weeks ;D
How do you do a quarter squirt of Lenzetto then? Doesn't it just do one pump per press, is it possible to be accurate with less than one pump doses?
How come your body tolerated this amount of estrogen relatively recently and now just can't? I know that I've had low estrogen for years because desogestrel suppresses it to around 250nmol or lower - and I've been on desogestrel about 8-9 years before HRT. So my theory for myself is that my body is no longer used to higher doses, a bit like a post-menopausal 70+ year old woman's wouldn't be. But it seems you've been on higher doses pretty recently??
Have you tried doing the whole dose in one go in the morning, with the hope that it wears off by night time, or are you getting symptoms throughout the whole day?
Whilst I am managing to get some decent sleep at the moment, I am still kinda throbbing and pulsing and palpating and I can't live like this long-term because it can't be good for me in other ways and I'd be afraid to! :o But I've only been at this level for just over a week and I feel like I need to demonstrate that I've given it a good go... To further confuse things, I'm getting skipped beat palpitations in the evenings now - which was one of my before-HRT symptoms - and some bits of thicker discharge which I think means that I need more vaginal estrogen. I can increase vaginal estrogen but can't do anything about the skipped beat palps... It seems that some parts of me want more estrogen and other parts want less ::)
Hi joziel - honestly don't be put off Lenzetto - its just getting the right dose that like all HRT seems to be is the key. Getting smaller doses is super easy. I measure across the width of the applicator nozzle (2") then mark the quarter top and bottom and tape across (I use the thick brown tape removal guys use to tape up the boxes when moving house - it lasts and is both strong and durable.) Each Lenzetto has 56 sprays in so it's not like you have to do it very often. I get prescribed 2 packs of Lenzetto every time - I use the other one for the 2 sprays and the taped for the quarter. It stays at a very accurate dose re taping it off I never had a problem with that last year.
Regarding dosage I've not been on Oestrogel (3 pumps) for over a year now and was put on a much lower dose of Lenzetto when I was changed over (only one and quarter sprays) so have been used to a low dose now for over a year. Then of course it was unobtainable for a while which is why I had to change to patches as gel was not available either :( . The last blood test I had done on the Lenzetto my level was 143 and plus I was just starting to get hot flushes etc back so this is why the MC put me on 2 sprays this time and then up to 3. On coming off the patches (3 days only back on Lenzetto my level was only 91 but was told to expect a low level having just changed over.) Been feeling really awful all day today - shaky, jelly legged and cotton wool head couldn't think straight but just beginning to feel a bit better this evening so will go to the lower dose tonight. I never had any problems at all when first switching to Lenzetto from Oestrogel so feel the patches have really messed me up to be honest. For me that delivery method just did not work.
I do the whole dose in the evenings as that suits me better about half an hour after a shower and again never had a problem with that until I was changed to the patches.
I do feel totally sure that it will all settle down - I know Lenzetto suits me as it did before but it is a matter of getting the dose right now and that's the part that seems to be taking f o r e v e r !!! Its so easy to use I love it. Having changed 3 different types in 3 months on different doses I know my whole system needs to calm down and level off.
So very sorry to hear about your night times. Oh Jeez do I sympathise. I was just getting to relax and sleep better at night and then wham - backwards again. I know a lower dose will improve things just hope it kicks in soon. I'm so sorry to hear about the skipped beats too. I hate the palps and heart issues I really feel for you.
For me I found, as I said before, that the patches gave me a real zap the day after I put them on and always about a week after a dose change I felt the new dose kick in usually making things worse as I was told to increase slowly upwards whereas you and I both know that for us that was going in the wrong direction! Here's hoping we both find a level playing field very very soon!!! xxxx
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Sounds like we are still all struggling ladies 😞 my sleep at the moment is non existent, I feel absolutely terrible. I'm fatigued and feel quite low. I feel pangs of anxiety and keep feeling like I feel trapped and need to get out of my house, I'm constantly restless even though I've not slept 😳.
My patch is up to 50 now, I know it's early days but I feel rubbish !
Pippa52 I'm sorry to hear you have the caffeinated feeling, I get that a lot, it's vile. I think estrogen is liked with cortisol which would give the caffeinated feelings.
Joziel, I'm sorry to hear you are also struggling. I have been getting return of palpitations on the lower dose too.
I just wonder if I will ever feel normal again 😞
lillith112 - oh noooo I am so so sorry to hear you are struggling too. Honestly I truly think all these changes of medications have really messed us all up and our systems are really inflamed and out of sync. So sorry also to hear you get the caffeinated feelings - along with the anxiety its really so hard to cope with. I hear you re cortisol as it really feels like that is kicking in especially at night - I think I got about 2 hours sleep last night max so I am so sorry to hear how bad your sleep is too.
I do honestly think its going to take a bit of time for us all to level out and to do that we of course have to find the right level which seems to be akin to a needle in a haystack at the moment.
Also really sorry to hear about the palpitations. I really HATE those too. I feel your pain when you say 'I just wonder if I will ever feel normal again'. I honestly think you will - I think we all will it's just going to take time unfortunately. Sending love and hugs to you and joziel xxx
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FYI joziel and lillith - don't know if you are on Facebook but if so this is also a useful group .
They have a live question session every month too with an expert.
xx.....https://www.facebook.com/groups/midlifemenopauseclinic/
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Welcome to the Women with Ambition, Attitude and Brain Fog community. We exist to support women who are entering midlife and menopause, offering guidance, advice from experience and positivity. From HRT and menopause advice to nutrition and fitness, we've got resources, videos and a network of brilliant experts to help you navigate midlife. You'll find lots more medical and wellbeing resources on our site, mpoweredwomen.net. See less
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Only members can see who's in the group and what they post.
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I'm in that group already (and several other FB menopause groups :) ). I tend not to post very much because you never know who else is in these groups and I don't really want friends and family to be reading about my vaginal dryness, hot sweats and when I'm bleeding ;D ;D ;D But I do read them a lot for info...
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I'm in that group already (and several other FB menopause groups :) ). I tend not to post very much because you never know who else is in these groups and I don't really want friends and family to be reading about my vaginal dryness, hot sweats and when I'm bleeding ;D ;D ;D But I do read them a lot for info...
;D ;D ;D ;D ;D totally understand - ditto here :) Knowledge is power so many sources can be useful - albeit anonymously ;) x
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I actually slept last night no fast heart beat and today was considerably better than yesterday - the caffeinated feeling has mostly gone but from past experience I know for me that a change of dose seems to take 6 days or so to totally kick in so until a week or so has past I won't know if the lower dose is going to work well. I hope so much all you ladies have had a better day/night too? xxx
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That's great Pippa. So this is on 2 and a quarter of Lenzetto? What was happening before when you were on 2, was that too low and you had some symptoms still?
For me, when I increase doses it takes about a week before I get the too much estrogen side effects. But when I decrease, it is pretty immediate that I get the results, within about 6 hours anyway. So hopefully your improvement will stay...
I am sleeping okay now too (thankfully) - except I know I am still throbbing. It is like one of those things you train yourself to ignore and not pay attention to, since you know you will just wake up more and worry if you do.
So whilst I can sleep, this isn't normal (yet) and it can't stay like this long-term. But after being at 62.5, I was only at 50 for half a week before I came down to 37.5 - and have only been there for 1.5wks so I feel duty bound to remain here a while or otherwise, when I report back to my GP, they will think I have accelerated downwards too fast and not given things a chance! I am going to do a Medichecks finger stabbing test on Monday for estrogen levels.
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Well I'm still hardly sleeping ladies 😞 I'm surviving on about 2-3 hours sleep a night. I've thought about buying some progesterone cream online (progest) and using that as I tried it before and slept like a baby, but would that interfere with my HRT, or doesn't it matter as it's progesterone ?
Also I'm 50yrs old in a couple of weeks, I'm wondering if I could go on a continual HRT or is that a bad idea to mess with it even more ?
I think I'm going to do a medichecks hormone profile to see where I am with all this.
I'm also still losing tons of hair after having covid 😭. I suffer with stress hair loss anyway.
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Hello ladies.
Can anyone work out a puzzle for me regarding oestrogen doses?
I am in the process of reducing my Sandrena gel as suggested by an NHS consultant. This time last year I was using three 1mg sachets which is the equivalent of six pumps of gel. I am now on one Sachet a day but when I checked my diary from last year my symptoms of frequent jitters and tearfulness seem about the same.
I wonder if any of you knowledgeable ladies who have experience of too high and too low oestrogen effects have any thoughts on this? I am confused as to why I feel the same on one Sachet as three sachets.
Many thanks ladies and wishing you all well.
K.
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Hey meno warriors!
Feeling like death here too.
Sleep is non existent.
Anxiety is on the up.
Irritability off the scale.
Totally done with this crap 🤦♀️🤦♀️😴😴
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Lillith - can you summarise where you are with things? What do you think is causing your insomnia? It's hard to keep everyone's story and dosages separate, I get everything mixed up... :o For sure I think you can add in progesterone cream. It shouldn't interfere and if anything should only help, being progesterone. It can't replace the HRT progesterone but if you want to use it as well, I can't see that as a big problem unless you vary the dosage a lot and it causes bleeding...
You can definitely trial going on a continuous HRT. I'm peri, 44yo and on continuous. The only bad thing that will happen is you will get breakthrough bleeding if you're not ready for continuous yet. But that's not 'dangerous', if you're peri, it's just inconvenient. Women on the POP get breakthrough bleeding sometimes and no one freaks out about that.
Kathleen, if your jitters and tearfulness remain no matter what you do with your estrogen, the logical conclusion is they're nothing to do with your estrogen levels and might be due to other things. Everything that happens to us at this time of life isn't related to hormones. All depression/anxiety can't be fixed with hormones. Sometimes there's a need for other meds as well as HRT. But you should only be on the minimum estrogen you need (at a good level) for your peri symptoms and not a really high dose if it's not helping you.
Nas, I'm really sorry. Are you taking magnesium bisglycinate at night? That is supposed to help with sleep although it never helped me much when I was struggling a few weeks ago, but I still take it. Perhaps it takes a while to build up(!). Progesterone is also supposed to help with sleep, anxiety and calming - and you can take that as well as the coil if you find it helps - but I seem to remember you're progesterone intolerant, so that might not help. Maybe you could experiment with some progesterone, but not a whole capsule? Like, perhaps something like half a capsule might help with the sleep but not cause the progesterone side effects... That's what Lara Briden recommends. She suggests poking the capsule with a pin and squeezing some out. If you've got the coil for uterine protection you can experiment safely with that side of things...
I'm sleeping okay at the moment (phew). I feel like I'm catching up, as I'm out like a light for a good 7 hours. But every now and again when I change position or when I first wake, I am throbbing a little.
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Hey meno warriors!
Feeling like death here too.
Sleep is non existent.
Anxiety is on the up.
Irritability off the scale.
Totally done with this crap 🤦♀️🤦♀️😴😴
Nas - so very sorry to hear this. I feel your pain I really do and send you love and empathy. Everything is always magnified with lack of sleep too. I hate the anxiety parts. So hope you start to feel better soon xxx
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Thanks ladies,
Don't feel too bad now..it is first thing in the morning which seems to be worst.
I don't know what it is, but I seem to be constantly evaluating life at present. Thinking of things I should have done/shouldn't have done etc and it's not a very productive way of using ones brain really!
I am on the 75 patch, but yesterday, I added a sachet of gel. By the afternoon, I was feeling quite energised and mood was good.
I have done the same today (1 sachet to the patch)
I know when the hormones are on the blink because I get awful driving anxiety. That is, when I can barely drive my car properly. Yesterday that was bubbling. I was dreading today, as I knew I had to collect my daugther and her friend and drive them both to the train station. All the roads are bendy and fast and I hate them with a passion. However, somehow,I drove with relative ease. Really I can't go back to that level of anxiety again. So, new regime for now, is patch plus gel (until stash of gel runs out and then will have to seek specialists input again).
I will experiment with the progesterone joziel, thanks.. maybe it will calm the system down during the night?
I am glad you are sleeping; if you are getting a decent sleep, everything else (I think) is a bit more manageable?
Kathleeen, I think joziel is right, We attribute so much to hormones, but how much is actually down to life itself? It can be hard to separate the two. As you say, you feel the same on 1mg, as you did on 3 mg of gel, so it can't be a hormonal imbalance causing these symptoms? When you say you are tearful, do you mean that you cry at sad news reports, or situations? Or, do you tear up for no apparant reason? I know when I watched a news report last week, about the lad who was brutally killed by his mothers partner, I was inconsolable and then very angry. Couldn't sleep and was so angry wtih social services etc. Maybe as we age, our emotions become heightened and we become quite sensitive?
Pippa, best of luck with the lenzetto. I personally found it to be a very weak product, BUT if you can get the dose right for you, you may just start to feel better again? Were you on the gel prior to lenzetto?
lillith, what regime are you on now? Is it 125 patches? Are you peri or post? I have some of the serenity oestrogen and progesterone cream which my mum bought me last year. I have never used it, but I always think that as this time of life, when faced with these challenges, that anything is worth a go. You never know, it may be what you need right now. Serenity talk about oestrogen dominance and the need to ditch it altogether and use progesterone only. I am not sure of their rationale and still think that if we are anyway deficient in the three major hormones, then we are going to feel out of sorts.
I hope we all have an okay day today.
One day, it would be great to not have to think about hormones, weeing, insomnia, anxiety etc etc.
I am sooo jealous of my 17 year old daughter, who sleeps and sleeps with no anxiety!
:)
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''Pippa, best of luck with the lenzetto. I personally found it to be a very weak product, BUT if you can get the dose right for you, you may just start to feel better again? Were you on the gel prior to lenzetto?''
HI Nas, I was on Oestrogel for over 20 years originally but then had to change to Lenzetto last year then when that became unavailable was changed on to Evorel which gave me migraines from hell so was then changed to Estradot and re-acted really badly to the adhesive so now back on Lenzetto again. :'( No wonder my poor system is all over the place ;D ;D ;D. I can't face changing yet again and will try getting the Lenzetto dose right. I seem to only need a fairly low dose of oestrogen now (am on 2 and a quarter sprays of Lenzetto at the moment) so maybe hopefully if Lenzetto is weaker it may (fingers crossed) work for me. I certainly found 3 sprays made me feel OTT and over caffeinated like a zillion cups of strong coffee so am hoping cutting down a bit will do the trick. Do hope so much you start to feel better soon. I hear you big time re your daughter sleeping like a babe - oh for those days ay!! xxx
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A quick update. I slept like a total log last night. In fact I really struggled to wake up. It felt almost scary when I woke as I am so unused to sleeping well. Today has been ok bit spaced out, lightheaded and headachey but that will be the dose change. Onwards....
Hope the rest of you ladies had a better day today. xxxx
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Sounds good Pippa! Ever since I started slowly reducing my estrogen my sleep improved.
I’ve gone from 3/4 hours a night to 6. I’m post menopausal so don’t want to influence any peri ladies in any way!
X
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What estrogen are you on now Marchlove?
Pippa, what was your dose change? You were on 2 pumps, right? Then you tried 3 but that was too much and gave you high estrogen symptoms - then you reduced to 2 and a quarter? Is that right?
I find all this very interesting. How a very slight dose change makes a big difference.
I am doing an experiment tonight. I'm supposed to change my patches tonight (3.5 days), but instead I've just taken off the little patch and left the 25 patch on. I did this at 6pm because I think I read it takes about 6 hours to get out of your system. So by the time I go to bed, I should be at 25. So we'll see how much pulsing and throbbing and stuff happens. I still plan to put 37.5 on in the morning because I'm not quite ready to give up on that dose yet ;D
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Hi Joziel
I’m on compounded biest which is 0.25mg estradiol and 1mg estriol. I do not need to take any vaginal estrogen so I feel the 1mg estriol really helps with VA.
But I still feel I’m on too high a dose of estradiol so I err on the side of a slightly reduced full pump and my long term goal is to reduce to estradiol to a level that my body accepts.
I know the route I’m taking is beyond the expense of many members, but I sincerely feel that a reduction in estradiol for women, coupled with a good amount of estriol provides good benefits.
My aged doggie is on oral estriol,1mg twice a week so I value her input in my journey!
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I had zero sleep last night and felt dreadful today, jitters and restless, anxiety, like on a caffeine high.. I will update when I'm feeling a bit better. 😞 I'm so fed up, I don't know what's going on with me.
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Marchlove, does that equate to about 75mcg patch then - or is it not possible to say that? Is it oral, the estriol? I didn't realise you were trying estriol over estradiol. I know that Vagifem is estradiol and Ovestin is estriol but didn't realise there were those options in other ways.
I had a dog once that was on Incurin, which I think is a type of estrogen. It was because she had spay induced incontinence. It didn't work for her and she needed another med (propalin) instead which wasn't estrogen. I often wonder if we shouldn't be putting spayed dogs onto doggie HRT but that is probably a whole other subject. And seeing how we struggle to get the side effects sorted in humans, I don't know how we'd do that with dogs ;D
Lillith, I'm so sorry. I know how frustrating it is. What dose are you on?
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lilllith - I am so very sorry you are feeling so rubbish. It seems changing over HRT due to the shortages has messed up so many of us in so many ways. I really hope you start to improve very soon xxx
joziel - yes I was on 2 sprays of Lenzetto - then went up to 3 which nearly blew my socks off and now for the last 4 days down to 2 and a quarter sprays I know it sounds crazy but the one quarter extra so far seems to be ok rather than just the 2 sprays when I was getting the anxiety, palps and insomnia back. Its very early days so I won't get my hopes up yet but I am praying I am on the right road at least. My son is a vet and my late Husband was a vet so propalin is a very well known med to me for incontinence in dogs :) I used to answer all the emergency calls at the weekends and evenings - truly don't miss those broken nights but hey...... now sleeplessness has have been replaced by menopause and HRT - joy!!! ;D ;D ;D ;D. Very best of luck with your experiment tonight and hope it gives you a really good night's sleep xxxx
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Sounds good Pippa! Ever since I started slowly reducing my estrogen my sleep improved.
I’ve gone from 3/4 hours a night to 6. I’m post menopausal so don’t want to influence any peri ladies in any way!
X
Marchlove so pleased your sleep is so much better. It honestly makes such a difference. I am post meno too. It is so interesting that you and some other ladies on here including myself have found that reducing the dose is what has helped us not putting it up (which I was advised to do). Just shows how much we all vary in what we need to get on a more even keel xx
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Hormones and doggies Joziel, an issue that mirrors our own very much! Surgical menopause with no subsequent hrt that we know how to administer correctly is very sad, so my view now in all of my dogs is to avoid it if you possibly can.
Incurin, which my dog is on, is estriol. The vet said for me to give it to her every day, which I did and it stopped the Incontinence , but then I sort of realised it was too much and reduced it down and she stabilised.
It’s a compounded cream of both estradiol and estriol.
I think the estradiol is equivalent to 1/3 of
of one oestrogel pump, but don’t know how it equates to a patch. My specialist says it’s a very very low dose.
Yes my sleep is better but still got a way to go with day time symptoms, but that I know is mainly due to progesterone intolerance. An ongoing journey… x
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lillith, I hope you managed to get some sleep last night? It’s awful when you down sleep and have tp function the next day.
Pippa, sounds like the lenzetto ( at the right dose) is the one for you?
Long may the good sleep last! How an earth do you manage a quarter spray from the canister? ;D
Well I did an experiment yesterday and added a sachet of sandrena to a 75 patch. Mood improved dramatically and actually got some sleep. Could be a one off, who knows! That’s approximately 125 of Oestrogen. My actual prescription is for 1mg of sandrena ( I had spare patches) so god alone knows now I’m going to address that with specialist ( she’s a lowest dose possible kind of specialist!)
On the joys ! :)
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Nas, don't worry. If you figure out that's what you need, you'll be able to find someone to prescribe it for you. Might have to go private though ;D
Pippa has 2 Lenzetto sprays and she tapes over sections of one spray to block it off somehow. I thought I was advanced with my patch-cutting skills but I think that takes the biscuit.
I'm not totally sure about my own experiment last night - I just had the 25 patch on from 6pm till this morning. I didn't get any skipped beat palpitations in the evening, which I was getting at 37.5 (and also before HRT at all) - so that doesn't make any sense, since more or less is causing the same symptom there ;D I slept well, but I've been sleeping well these past several nights on the 37.5 anyway. And the throbbing and fluttery palps were still there, but even less... not totally gone though. Although perhaps it would take more than 12 hours at 25 for them to go and this probably isn't representative of what 25 really would be like long term...
I think there's probably not much point to repeating the experiment unless I want to trial 25 for longer.
Meanwhile I saw on Instagram today on Louise Newson's thread a post about bone health which says "Even the low dose types of HRT provides bone protection to women". ??? So there we go... That does seem at odds with what many of her own doctors are doing when they aim for particular levels in bloods, but anyway...
As for dogs, my current 8yo is still unspayed and won't be. ;D I just can't bring myself to deliberately remove her estrogen. So many of these symptoms are 'silent' - you wouldn't know that women have them without them telling you, you can't see them by looking at someone. What might dogs be suffering... The main risk for not spaying is pyometra. So we just observe her closely and - like we do with human health - we'll treat that if she gets it.
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I have a friend who had her dog spayed, they removed her uterus but kept her ovaries. I thought that was pretty amazing!
Apparently not many vets know how to do this operation in the uk but it’s becoming more common in the states.
Oh, just realised I’ve hyjacked this thread with doggie talk. Sorry :-*
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Yes, we had our dog spayed like that. Apparently, they do it like that in Germany mostly, so the vet told us anyway. He explained how they do it, and Christ above, the traditional way of doing it sounded barbaric! :o
It was key hole surgery too, much much better for the dog. Ours recovered much more quickly than our other dog did, who had the ‘traditional’ surgery. No big incision, no trauma to surrounding muscles, and just a small cut to keep an eye on.
It did however, cost a bit more, but if it’s better for the dog, it’s a no brainer.
My parents dog had pyometre. :'( She was about 13 if I remember correctly.
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Arggg. After my experiment of one night at 25 last night my body is protesting about going back to 37.5 and I had horrible palps and throbbing. Not as bad as a while back and I did get some sleep but no where near as good as things had gotten to.
I don’t know if I should give up and go to 25. It just seems so low 😞 or stick here and hope I adjust to it again. I feel better at 25.
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Stay where you feel better Joziel xx
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I just feel like a failure if I go down to that - and I feel great in the day ???
I wish there was some way I could be at 37.5 or even 50 (when I was also fine in the day) until 6pm, and then go to 25 overnight :-\
Is there any way to do that?! (Without wasting a ton of patches!) I know some women say that the gel or spray wear off by evening - which is why they split the dose. So I could do the full dose in the morning and hope it wears off? But I know that tests have been run showing that blood serum levels stay up on gel and spray, usually...
Or can I take a patch off overnight and then re-stick it on in the morning!?!? :o
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Hi ladies… On the dog spraying theme laparoscopic spats are absolutely brilliant because they leave the ovaries in plus the recovery time is minimal. My son does it at his practice and more and more practices in the UK are starting to do it now. So much kinder on the dog but not quite so kind on the wallet! :) x
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There are 2 different kinds of lap spays. There is the kind where the ovaries are removed and the uterus is left (but shrivels up without the hormones so is okay to leave). I had a previous dog have that done and recovery time was incredibly fast - but she still lost her hormones. She was 6yo though, so we waited quite a long time. That kind originated from mainland Europe and is done a lot in the UK as well.
And then there is the kind they are starting to do more of in the US, what they call 'ovary sparing spays' where they remove the uterus and sometimes the cervix too but leave the ovaries. There are much fewer vets doing that in the UK but there are starting to be some. The dog still cycles and will be attractive to males, but won't bleed.
So all lap spays aren't the same. They are all keyhole surgery but different organs can be removed(!).
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Joziel …. I was really interested in your post which you described your experience cutting down to 25 patch. As you know I had slightly increased my dose and yesterday and today had the worst day of the whole scenario. Incredible anxiety and panic tachycardia episodes it was really scary and about one hours sleep and still feel dreadful today. It just goes to show how a tiny increase/ or decrease can have quite a large effect in some cases. I really do not fancy ever having another night like last night so I will be reverting firmly back to 2 sprays and try to hang on in at that till the next consult. Will this nightmare ever end ?? Re spaying yes you are absolutely right there are several laparoscopic procedures . Removing the ovaries only is becoming the preferred option by many practices xx
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Gosh I’m my opinion, keeping the ovaries would be the preferred option. Let’s hope more vets are able to do that x
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Pippa, I thought you were getting on really well with the 2 and a quarter sprays? Are you saying that was just because it hadn't had long enough to kick in yet?
I just feel like there is some underlying mechanism going on here for us all. I just find it really hard to believe that we are all so intolerant of this hormone which is identical to the hormone our own bodies made copious amounts of until very recently :o Much more of it than we are all struggling with at the moment. What is going on with us all and why does no one have any answers for us? (Beyond dosage changes etc.) I feel like there is something we are missing.
I mean, when I was 21yo, I went on a combined pill (synthetic estrogen) which had the same effect on me as estrogen now is having. That was when I was young still and used to high estrogen levels as I'd been ovulating and cycling. So is it something in us which makes us sensitive to estrogen and if so what exactly? Something genetic?
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Hello again ladies.
Joziel - I agree that there must be something else going on for those of us who struggle with HRT. As you say could it be genetic or are we over supplied with Oestrogen when we are young and then become super sensitive to it?
Are we affected by receptor distribution? For example even when I came off HRT a few years ago I didn't experience many of the bladder and vaginal symptoms many women complain of. I also didn't get a lot of muscle pain either, for me the menopause has become entirely about the emotional symptoms.
Years ago I read an article where the woman was told that for her, progesterone was more important and was infact the calming hormone, could adding Oestrogen, even in small amounts be a problem for some of us?
It would be nice to think that the response to HRT use was being monitored and data collated. As you say there appears to be some underlying mechanism going on here and it would be reassuring to know what it was being investigated.
Take care.
K.
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Hey all,
Hideous here.
My 125 experiment hasn’t worked today. Woke up early, sad, irritated, irritable.. oh my, I actually give up right now!
Maybe it’s this damn coil ? Who knows!!
If I could ditch Hrt, I would. But blessed bladder plays up then.
What is the answer?? 🤔
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I have also read about progesterone being the calming hormone Kathleen.
Not sure if that includes the coil, but I’m going to take a couple of utrogestan tonight, to see how I feel in the morning.
How hard can all this be?
Pippa, at least you know 2 sprays is your limit, no messing about with that for now, I’m sure!
Joziel, I won’t be asking specialist for 125mg, that’s definite. Not sure what the dose should be in honesty. At least you are sleeping ?
Lillith, how are you today?
Has anyone tried those Health and her supplements? Waste of cash do you think?
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Hey all,
Hideous here.
My 125 experiment hasn’t worked today. Woke up early, sad, irritated, irritable.. oh my, I actually give up right now!
Maybe it’s this damn coil ? Who knows!!
If I could ditch Hrt, I would. But blessed bladder plays up then.
What is the answer?? 🤔
So sorry to read this Nas. Like you I just wish there was a universal answer for all of us without this roller coaster nightmare. xxx
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Pippa, I thought you were getting on really well with the 2 and a quarter sprays? Are you saying that was just because it hadn't had long enough to kick in yet?
I just feel like there is some underlying mechanism going on here for us all. I just find it really hard to believe that we are all so intolerant of this hormone which is identical to the hormone our own bodies made copious amounts of until very recently :o Much more of it than we are all struggling with at the moment. What is going on with us all and why does no one have any answers for us? (Beyond dosage changes etc.) I feel like there is something we are missing.
I mean, when I was 21yo, I went on a combined pill (synthetic estrogen) which had the same effect on me as estrogen now is having. That was when I was young still and used to high estrogen levels as I'd been ovulating and cycling. So is it something in us which makes us sensitive to estrogen and if so what exactly? Something genetic?
joziel - re the Lenzetto I wish I knew. Yesterday and the night before were unliveable with - have made an appt with my GP tomorrow to discuss all this as I seem to be going nowhere fast and yesterday was the biggest back step yet with last night and today far from great. How are you doing? x
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Really worrying for women :( lets hope now with all the publicity recently that things start to improve.
https://www.dailymail.co.uk/health/article-11064809/Women-flock-expensive-private-menopause-clinics-NHS-waiting-lists-survey-suggests.html
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Pippa I'm really sorry to hear that :-\
I wonder if some of us are just really sensitive to change itself. Any change, getting higher or lower or changing the method of application... and once that reaction has been started it's really hard to get out of it. Maybe something to do with estrogen receptors being sensitised or something.
The only 2 ideas I have for you, are to drop your estrogen right back to just a very small amount (one spray?) and see if your insomnia etc goes away. You might get back your low estrogen symptoms for a while but maybe you have to have those back for a few weeks whilst everything stabilises. And then, when you are sure that you have zero insomnia issues, increase by a quarter spray. And wait a few weeks.... and so on.... titrating upwards from almost nothing.
The other idea is to have a total break from all estrogen for a few weeks to let things reset and then to do as above...
Those are my two final ideas I have for myself. I am probably going to reduce to 25 patch very soon, because although I am sleeping at the moment, it is with fluttery palps - and that just doesn't seem right, every single night. I'm also getting worried about this just not going away even if I were to stop estrogen and ending up with some kind of heart condition as a result of all this. But 25 seems like a final desperate attempt.
I am going to do a Medichecks test in the morning, to see what my bloods are at 37.5, just for future reference. I'm not sure why I'm doing this as I will just freak myself out if they are ultra low - and yet I can't go up :-\
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Hi joziel....thanks so much for your message. Your advice makes perfect sense on both counts and I will definitely have a think on your suggestions. I am just staying put today on the 2 sprays I think and will see what the GP says too. I was v lucky to get a cancelled telephone appt as she is very sought after in the practice and only part time and definitely the most knowledgeable where HRT is concerned. MC is away till September.
Your plan going down to 25 seems very sensible. The palps are horrible to have to live with and you shouldn't have to long term I did read somewhere ( I have been trying to find it with no success so far) that even low dose Oestrogen HRT protects against bones so I hope that is correct - I will ask the GP tomorrow.
The disadvantage of the spray is it's impossible to get a totally accurate dose all the time unless it's the whole spray. I measure the taping off very precisely on a measure but even with that I don't suppose it is spot on and you and I seem so sensitive to the smallest change in dose :'( The MC did say that once the oestrogen receptors become inflamed it does take a good 4 - 6 weeks for them to calm down so I guess that probably has a bearing as well.
Be very interested to hear what you blood levels are today. Think you are wise to do it even though it's obviously worrying wondering what the result will be. At least it will give you a guide but as you rightly say it's the symptom control that is the key. xx
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Hi Pippa, I envy you having someone you can make an appointment with so easily ;D It just helps when dealing with all this not to feel so alone with it, and the inaccessibility of GPs and MCs just adds to that I find!
Let us know what they suggest...
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Hi Pippa, I envy you having someone you can make an appointment with so easily ;D It just helps when dealing with all this not to feel so alone with it, and the inaccessibility of GPs and MCs just adds to that I find!
Let us know what they suggest...
Sheer luck really..... logged on and clearly there had been a cancellation done over yesterday afternoon as there were no appts available for Monday when I checked earlier yesterday. Yes of course will let everyone know what she says. Hope everyone has a good day today xx
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Morning Ladies - so latest update in the epistle. Had a telephone consult with a GP this morning (thankfully a knowledgeable and understanding one on HRT). She has advised me to go back on to my very original HRT the gel Oestrogel. She feels it will be much easier for me to fine tune the dose of the gel. I have some milligram scales so can weigh it totally accurately if needs be. She has recommended I start on 2 pumps daily - one in the morning and one in the evening. Just picked up my prescription and have applied the first pump. Interestingly was also given this advice with a sheet on when I picked up my script. ''The gel must always be applied in a 'pat and glide' motion and should not be rubbed in in a windscreen wiper motion. Rubbing in merely leads to waste as a substantial proportion of the gel sometimes as much as 20 - 30%, ends up spread over the palms/fingers and is subsequently washed away after application. The gel should be pumped onto the palm of the hand and if the correct technique is used there should be virtually no gel left on the hand after application indicating optimal utilisation of the product''..... Have to say having just done it with that method it really works and also means the gel appeared to have dried really really fast. Previously for all those years I was just rubbing it in so food for thought as I certainly did wash more off my hands and it took much longer to dry. Sooooo will see how this goes - last chance saloon really as have tried most of the other options and at least I know that it used to work really well for me all those years. How are all of you this morning? xxx
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Hello again ladies.
Pippa52 - very interesting information about applying the gel. When I used it the patient leaflet said there was a guide included indicating the area of skin to be covered. I never noticed any such thing so I spread the gel fairly thinly over most of my inner thigh. Now I am on Sandrena sachets and the leaflet states that the gel should be spread over two palm widths of skin.
Can I ask where you got your milligram scales from? I assume a pharmacist? I plan to reduce my dose still further and an accurate way to measure the gel would be great. I am sure that other ladies would be interested as well.
Wishing you well.
K.
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Oh that’s interesting re the mini spatula Joziel!
I read in the states the ladies use some sort of device to apply their creams but could never find out what they actually used.
There must be a product designed just for this purpose as they do a lot of blood spot testing in the states so for them to be accurate they can’t have any contamination.
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Hello again ladies.
Pippa52 - very interesting information about applying the gel. When I used it the patient leaflet said there was a guide included indicating the area of skin to be covered. I never noticed any such thing so I spread the gel fairly thinly over most of my inner thigh. Now I am on Sandrena sachets and the leaflet states that the gel should be spread over two palm widths of skin.
Can I ask where you got your milligram scales from? I assume a pharmacist? I plan to reduce my dose still further and an accurate way to measure the gel would be great. I am sure that other ladies would be interested as well.
Wishing you well.
K.
Hi Kathleen
Many thanks for your kind good wishes :) I got the scales online several years ago when having to measure accurately our dear old dog's liquid medicine. They are Bonvoison scales one of the cheapest ones and they measure in grams which is fine for what I need. I am sure a pharmacist would be able to get a similar one for you. I think it has to be the only way really to get a pretty accurate dose of gel each time. Hope so much that helps P xx
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Pippa, good luck!!
By the way, I use this mini silicone spatula to spread my Testogel on my thigh(!!): https://www.amazon.co.uk/gp/product/B07FW2XTHF/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&th=1 For the same reason - I didn't want to waste it by washing it off my hands. I also didn't want to contaminate my hands with gel at all so I could do Medichecks tests. It is working really well!!
I did a Medichecks estrogen test last night and it got posted this morning. I had to stab 2 fingers this time to get enough blood and then the second stab bled too much ::) and the kitchen table looked like I'd murdered someone.
Anyway, I have to make some changes. I am going to try going to the 25 patch from 6pm in the evening until I get up the next morning. And try to stay at 37.5 the rest of the time. If that isn't working after a few nights, I'll have to lower to 25 all the time.
Morning joziel :) re the spatula such a great suggestion - funnily enough my Husband suggested just that this morning when I brought the Oestrogel home then a little while later I logged on and saw your message. Great minds! Thank you so much for the link so kind of you - I have ordered one this morning :)
Fingers crossed for you re the blood test. I was just the same when doing one a while back - had to lance two different fingers as could not get enough blood out of the first one, the second finger bled everywhere and then ended up with a huge bruise which was really sore for ages. Happy days - what us ladies have to go through!!
Best of luck with the 25 patch tonight. It seems with us less is more. Just hope so much we can all find our level playing fields very soon xx
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I think I've decided to reduce to 25 :'( :'(
My grand plan of putting 37.5 on during the day and 25 at night, I decided wasn't a good idea because I'm still experiencing some of these symptoms at night like that. So I feel like I need to test out 25 properly by giving it a few days at that dose instead of going up and down, day and night. I also don't know if fluctuating like that would cause me more probs than help, in terms of side effects - plus how do I store the removed patch bit overnight to be stuck on again the next day!? ;D And it's not very practical because I had to take that bit off around 6pm to be sure it had worn off by bedtime - and removing and storing bits of patch at 6pm, wherever I might happen to find myself, just wasn't going to work....!!
But I did do a Medichecks test at 37.5 before I reduced, for future info.
I'm really worried about what happens if the palps continue even at 25 :-\ I mean, what if all this never stops? It's not bad enough for me to stop HRT now, I am able to sleep at 37.5 and less - and I'm even getting through to 7am which is great.
But things are not yet 'normal'. The throbbing is minimal but it is still there very slightly. The fluttery palps are still happening a bit, when I sleep. They are not there when I fall asleep, but if I wake up for some reason, even lightly, they are there although not in an intense way as used to happen when I was woken up. It's just not 'normal' to live like this, even though I can sleep. I guess I'll have to go back to my GP and get a cardiac monitor for 24hrs....
Anyway I am probably catastrophising now, because for now I just have to hope that 25 is okay...
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Hi joziel - totally understand your reasons to reduce to 25 but honestly don't think you should beat yourself up about it. We are all so different in what our body needs or can tolerate and it may be that a 25 is all your body needs at this point in time. Its horrible having the fluttery heart and palps etc at night and you shouldn't have to be putting up with that. The great thing is that you had your heart checked out so you know it's more than likely the HRT that's causing it. The fact that the heart fluttering is getting less is a really positive sign plus you are sleeping better. If you are still concerned you could certainly get a 24 hr ECG monitor. They actually gave me one for 7 days last year when they were checking mine out and it was reassuring when it all came back fine. I also had a heart unltra sound scan afterwards. If its any consolation I woke up with tachycardia of 125 bpm this morning. Ok it didn't last long and I do know that when I eventually get the HRT dose right (bring it on!!) they will go and I would be pretty sure the same will happen for you. Its just the tweaking to get it right that is beyond frustrating.
I know its really hard but try not to worry too much - you had your heart checked which is good. Hoping so much that your 25 patch gets you where you want to be. xx
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Hi ladies - latest update - this is becoming like a hormonal blog ;D ;D ;D ;D
Yesterday my first day back on Oestrogel - felt pretty wired and spaced out but at the same time no headache and mood was much much better. Slept ok'ish last night but woke several times with hot flushes and then woke up at 6.30 am with fast heartbeat which only lasted a few minutes thankfully. Today I feel a bit less wired and spaced out and certainly less dizzy so baby steps but feeling postive. I was on Oestrogel for over 20 years till it became unavailable due to the shortages and it worked fine so hoping it will do the same again. How is everyone else today? xx
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I have ordered the spatula too, what a fantastic idea, it did worry me the washing off into the water supply.
Pippa, I bet it will take a few days to get used to the oestrogel again, hopefully everything will settle down soon. How many pumps did you use to be on before you changed over due to shortages?
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Good luck Pippa! How does 2 pumps of Oestrogel compare with your 2 and a quarter sprays of Lenzetto? Isn't it going to be a higher dose? It's all very confusing, this.
I haven't really had my heart checked out, beyond an ECG. It was a proper ECG trace with the 6 leads or whatever but not the same as a 24hr monitor.
I guess I'm also worried about my blood pressure and what's going on with that. Only I'm not sure what to do with that because it created a lot of anxiety for me to get my home blood pressure monitor machine out last time and do that 2x a day, I'm sure the whole palaver was creating high blood pressure ;D ;D Anyway, I think the high blood pressure episodes and the palps are related so hopefully it will all get better together...
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It is horrid Joziel doing a blood pressure test, I get anxious too and mine is always too low!
Hopefully it will settle for you on the lower estrogen so you won’t need to do them. X
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I have ordered the spatula too, what a fantastic idea, it did worry me the washing off into the water supply.
Pippa, I bet it will take a few days to get used to the oestrogel again, hopefully everything will settle down soon. How many pumps did you use to be on before you changed over due to shortages?
Hi Gnatty - snap - just received the spatula and it's great! Thanks so much joziel for the advice :) Re the Oestrogel originally I was on 3 pumps for all those years but over the last year due to various changes in what was available and what I could tolerate my dose has reduced (Lenzetto was definitely weaker) so have been told to do 2 pumps of Oestrogel now to start with. xx
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Good luck Pippa! How does 2 pumps of Oestrogel compare with your 2 and a quarter sprays of Lenzetto? Isn't it going to be a higher dose? It's all very confusing, this.
I haven't really had my heart checked out, beyond an ECG. It was a proper ECG trace with the 6 leads or whatever but not the same as a 24hr monitor.
I guess I'm also worried about my blood pressure and what's going on with that. Only I'm not sure what to do with that because it created a lot of anxiety for me to get my home blood pressure monitor machine out last time and do that 2x a day, I'm sure the whole palaver was creating high blood pressure ;D ;D Anyway, I think the high blood pressure episodes and the palps are related so hopefully it will all get better together...
hi joziel - 2 pumps I think are slightly stronger but for some reason so far they haven't been giving me mega side effects or headaches - early days though and I won't be celebrating till I am 3 months in. I do wonder if the body remembers in some fashion medication that has been taken before. :-\ Probably not - can't be the same as muscle memory after all!! The good thing about Oestrogel is being able control the dose very accurately by weighing it out on mg scales whereas the spray was much harder and far less accurate to cut down on. I HATE taking my blood pressure too especially with the fast heart beats as it goes right up even though I have good normal blood pressure normally. I guess though it's inevitable it the heart is going faster at the time then BP is bound to go up :( I am sure you are right in that when your palps settle down so will your BP x
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Yes, the weird thing is that I don't know if I'm always aware when I'm having the palps. Sometimes I'd be taking my BP (when I had to do it 2x daily for my GP) and I didn't think I was having palps and it would say 'irregular pulse' ;D But then I don't know if the BP machine was accurate with that because when I had my ECG done, I was sure I was having palps - and it was normal ::)
All a bit weird really... Anyway let's hope we are all on the right track now and I hope you do okay Pippa. It can take a week before you know though, can't it?
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OH MY GAWD ;D Get this! :o
I did the Medichecks finger prick test a few days ago when I was at 37.5mcg patch. I just got the result....
It is 453pmol/l
My last result, on a 50mcg patch, was 233nmol/l (venous blood draw).
Is pmol/l the same as nmol/l???
The range given by Medichecks for pmol seems the same as nmol:
Follicular 45.4 - 854
Ovulation 151 - 1461
Luteal 82 - 1251
Postmenopause <100
If so... I feel okay about having to go down to 25mcg now. I am also feeling much better at night.
Can someone just reassure me that pmol = nmol and they are equivalent values?
This is very interesting. ;D
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OH MY GAWD ;D Get this! :o
I did the Medichecks finger prick test a few days ago when I was at 37.5mcg patch. I just got the result....
It is 453pmol/l
My last result, on a 50mcg patch, was 233nmol/l (venous blood draw).
Is pmol/l the same as nmol/l???
The range given by Medichecks for pmol seems the same as nmol:
Follicular 45.4 - 854
Ovulation 151 - 1461
Luteal 82 - 1251
Postmenopause <100
If so... I feel okay about having to go down to 25mcg now. I am also feeling much better at night.
Can someone just reassure me that pmol = nmol and they are equivalent values?
This is very interesting. ;D
joziel....oh WOW that's amazing re your oestrogen levels. You can now happily revert to the 25 patch. No wonder you were getting those effects from the other doses of your patches as clearly you oestrogen levels are not low at all. So pleased for you. Hopefully now you are on the road to getting things on the straight and narrow :)
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Exactly Pippa, what must 75mcg patch have done to me!? ;D
No wonder I ended up in hospital with palps and high blood pressure, it could have been in the 1000s....
So glad I checked this, I feel like I've solved part of the problem. Although I'm not sure I can ever trust a blood test again now, I might have to repeat it 3x or something.... ;D How can I have halved my patch but doubled my estrogen levels... ;D
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https://eje.bioscientifica.com/downloadpdf/journals/eje/148/2/227.pdf
Looks like estradiol peaks in the early hours of the morning, so that was probably why the higher dose patch was causing you nighttime issues Joziel, as your own is still naturally still peaking at that time and your body didn’t fancy too much more!
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Exactly Pippa, what must 75mcg patch have done to me!? ;D
No wonder I ended up in hospital with palps and high blood pressure, it could have been in the 1000s....
So glad I checked this, I feel like I've solved part of the problem. Although I'm not sure I can ever trust a blood test again now, I might have to repeat it 3x or something.... ;D How can I have halved my patch but doubled my estrogen levels... ;D
Sheeeesh - hormones ay!!! Thank goodness you did the test and found out!! You have most definitely discovered why you were getting those symptoms - phew. Hopefully now things will really calm down for you xxx :)
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https://eje.bioscientifica.com/downloadpdf/journals/eje/148/2/227.pdf
Looks like estradiol peaks in the early hours of the morning, so that was probably why the higher dose patch was causing you nighttime issues Joziel, as your own is still naturally still peaking at that time and your body didn’t fancy too much more!
Marchlove I can so relate to what you say. I always feel really yuck and hyper in the early hours and have started to dread waking up which I do several times at that time of the night. I am post meno but definitely the early hours of the morning are not great. It is starting to improve a bit though so feeling hopeful - only 4 days back on Oestrogel so very early days. Hope you are doing ok? x
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Hello again ladies.
Joziel - I don't understand the measurements but I am pretty sure that pmol/l and nmol/l are not the same. I would think that the range numbers would be different according to the measure used. I expect it is possible to compare pmol/ and nmol/l by doing some maths but I don't know the formula.
Perhaps some more knowledgeable ladies can help out and give you some more information.
From the results you have it seems that you had a higher Oestrogen level whilst using a 37. 5 much patch than you did on a 50mcg patch. I wonder how that is possible? For example were you absorbing differently or did the manner of the blood draw make a difference?
Having said all that I am glad you are feeling better because that is the most important thing (have you concluded that less Oestrogen is better for you ?).
Take care and wishing you well.
K.
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It's all a bit confusing really. :o I will try to explain the confusing thing...
1) The patch is constantly delivering exactly the same amount of hormones and I hadn't just applied it (ie it wasn't in the process of building up, for either blood test) or running out (ditto).
2) So the only other explanation is my own hormones really.... because that estrogen has to be coming from somewhere else if it's that variable.
3) I am on quite a whack of utrogestan to suppress endo - 200mg continuously. Which is also supposed to suppress ovulation - and estrogen. For the first test, I was only on 100mg of utrogestan and I'd felt my ovaries wake up and fire shooting pains into my hips after 9 years on the desogestrel POP. I'd also felt my endo twinges return. For the second test, I was on double the utrogestan and I haven't felt my ovaries wake up and no endo twinges (yet). So if anything, my ovaries were less suppressed for the first test.
4) The first test was done at 11.30am and the second test was done at 9.45pm. Again, you'd think the first test would get the higher result??
5) The first test I'd been off desogestrel for 9wks before testing. The second test, I'd been off desogestrel for just 2wks before testing. (I went back on it again after the endo flare for 6wks, to quiet it down again before I tried again with double the utrogestan.)
So - how have I halved my patch, doubled my progesterone, been off desogestrel for less time for the ovaries to get making estrogen again - and tested at quite a low time of day compared to last time (I think?) yet got double the estrogen?? However I try to figure it out, it makes no sense.
But I'll take it.
PS - I don't really understand the pmol or nmol thing, but from searching on FB my current pmol levels seem very acceptable - whatever the nmol was...?? I tried to google if pmol is the same as nmol but just got more confused. And I don't know if it depends on what we are measuring (estrogen) either... I was also told by the GP at the practice where I had the test done that I had 'room to increase estrogen' with that result. Maybe even the doctors are confused by the nmol thing?? Maybe my Newson Health doctor misread it as pmol when she advised me to increase???
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Try this, joziel:
https://www.convertunits.com/from/pmol/to/nmol
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Hello again Joziel.
I Googled conversion charts and as suspected pmol/l is 1000 times greater than nmol/l. In other words 1 nmol/l is equal to 1000 pmol/l. So definitely not the same lol.
I wonder why Medichecks used different values? Perhaps because one test was a finger prick and the other a venous sample?
I agree that perhaps the difference in levels is due to your own Oestrogen and your use of Utrogestan/desogestrel.
As I said before as long as your symptoms are improving that's all that really matters.
Take care.
K.
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pmol/l is the normal measurement for estradiol blood tests in the UK. Other units of measurement can be used for serum levels of other hormones. Also, other countries use different units of measurement (esp USA). So the one you want for your estradiol from a blood draw is definitely pmol/l. Hope this helps.
JP x
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Yes Kathleen, it probably is the difference between venous and finger prick.
Symptoms are absolutely key x
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OMG, my bad!! :-X ;D ;D ;D ;D ;D
I just got out my results again to check this and I got the unit of the first test confused with testosterone - which is in nmol.
My 233 result for estrogen was pmol/l.
Well that makes even less sense really ;D ;D Because it really does mean that I almost halved my patch and doubled my estrogen ;D ;D
It must be my own ovaries. I don't get how they have done this but perhaps 200mg of utrogestan allows your ovaries to contribute more estrogen than the desogestrel POP does. And perhaps they have just taken a while to wake up fully after 9 years on the POP... like more than the 9 weeks I gave them before the first test. I can't think of any other explanation.
Also - y'all should beware of desogestrel if you're not on HRT. It causes low estrogen. If I hadn't been on it, I probably would still be fine and not have had low estrogen symptoms I reckon. On the plus side, I have discovered that I can use body identical progesterone to suppress endo in all this - I never knew that was an option before and doctors don't prescribe it by itself (without estrogen). So arguably it has all been a good discovery... (Might be a bit premature to state the last fact, will give it a few more weeks till I know for sure!)
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Hi Ladies - sorry for radio silence recently. Have been quite unwell. Over the w/e my blood pressure shot up really high and along with fast heart rate and feeling off the scale anxiety and no sleep plus very shaky and light headed. Spoke to GP who thinks there might be something else going on not just HRT issues so have been referred to see a cardiologist this week. Dreading it in one way but obviously need to know what is going on as can't continue feeling this under the weather. Hope so much you are all on the up.
Lillith - how are you doing? the last time you posted you were not good at all hope so much you are feeling a bit better xx
joziel - hope all is going well on your 25 patch xx
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Gosh Pippa, that sounds a bit scary. Hope you are okay. Let us know what the cardiologist says.
I'm doing much better at night on the 25 patch, but it's not totally normal. I mean, I still get the fluttery feelings and throbbing at night (which I think is high blood pressure) - especially if I wake during the night - I'm aware it's there, but I can now sleep through it. However, like you, I don't think this is 'normal' and it's not something I can accept long-term. So if it continues I will have to go back to my GP to investigate things more.
Meanwhile, having reduced to the 25 patch, a week later I had a flare of what I think is my VA. Only it involves the same glue-like thick pale yellow/clear discharge I had before starting HRT back in March - as well as slight burning in the vulva. I've very occasionally had a tiny bit of the discharge now and then on HRT, but nothing like this. So I don't know if this is just how VA manifests itself in me (it's not the normal watery VA discharge) and it's because I've reduced the patch - or if there is something else going on. But I had 2x swabs for thrush back in March and an exam where everything seemed okay. I've just made another appointment with a new GP at this new big practice I've moved to, for this Weds, for an exam. :'(
I'm not looking forwards to attempting to explain all the complexity of this to a new GP... I get a bit nervous about the responsibility and importance of me accurately communicating history and details in X minutes. I'm sure I come across as nervous, but I'm not nervous about having an exam or seeing the GP, so much as the pressure to get everything said and right in a few minutes ;D I wish I could just have one GP and some continuity, so I didn't have to explain things from the beginning - but I refuse to keep going back to a doctor I don't quite trust or one who I know is just plain wrong (ie telling me I can't have Ovestin AND Vagifem - as the last one!).
Meanwhile I've increased my Vagifem to every night and Ovestin to morning and night...
When is your cardiologist appointment Pippa?
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I might be joining you at this rate Pippa. Lying awake here on my 25 patch with a fluttery heart palps and lightly throbbing feet this time.
I’m going to have to stop all estrogen and see what happens. It’s not good either way. If I don’t need the estrogen yet and my ovaries have sprung back after the desogestrel and started making my own again and the heart palps stop then I might be okay for a few more years. But at some point I’m going to need this estrogen. I don’t really want to have to take blood pressure meds just to be able to use estrogen 😔
If the heart palps don’t stop when I stop estrogen then I’m going to end up with a cardiology referral.
😕 But I think it’s reached the point of stopping estrogen to be able to diagnose what is going on now instead of just blindly hoping it’s going to magically stop all by itself.
Meanwhile I’ve got this VA discharge and discomfort to deal with. 😞 It’s all a nightmare.
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joziel - oh nooo so very sorry to hear this. It is all such a total minefield. The most bizarre thing is that on both the patches and the spray I felt without doubt the dose was too high for me. However back on Oestrogel as you know and for over 20 years I was on 3 pumps. As you know I have been feeling beyond rotten so thought sod it I will just go for it and see and I raised my Oestrogel to 3 pumps yesterday as suggested by my GP like I was always on before. I have been putting it on twice a day 12 hours apart as an experiment to see if it was more level and lo and behold yesterday evening I started to feel almost human, I slept last night with only a few hot flushes but no palps and today I have really picked up. Been out in the garden doing some gardening - can't belive it really considering I was supposedly on a lower dose with Lenzetto. My mood is also back to normal happy yet with all the other types of HRT I never ever felt totally right....far from it apart from a few slightly better days which never lasted. Its so true what suits one person doesn't another. I have my cardiology referral tomorrow and am feeling a bit of a fraud as my blood pressure this morning was 119/20 so nowhere near high. However last week it spiked at 190/91 which I have never ever had before so it all needs checking out I guess. My GP is not convinced all this has been because of HRT but I think it most likely is - so many different types and doses in 3 months its not surprising my system is all over the place. Are you going to stop your HRT today? I understand why you don't want to take your BP I hate taking mine - maybe ask your Dr to take it for you when you have your appt with the new Doc? They will probably want to take it anyway I would think just to check everything. All I can say is I feel for you fellow HRT Warrior - this has all been beyond awful. I see you posted at 4.52 am. The nights feeling worried and awful are so so hard to cope with. Sending love and empathy xx
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Thanks Pippa, you know how it feels, I know ;) That is really interesting about your gel increase making you feel better. I wonder if it will stay like that, as it seems to take about a week before an increase has its full effect? I hope so for your sake!! Good luck for your cardio referral - that came through quickly!?
It's been weird these last couple days. Yesterday I got sharp pains in the ovary area (both of them) again, just like I did last time I stopped the desogestrel - both times we are now at 4-5wks after stopping, so clearly that's how long it takes for the ovaries to wake up ;D They are much better today though. I wonder if the ovaries are releasing more estrogen too, because my anxiety, high blood pressure pulsings, and just feeling pumped and on it has been all day now, today and yesterday - not just at night - and I'm only on a 25 patch. (And anxiety wasn't one of my pre-HRT peri symptoms!) I am trying to work at my computer and I feel like I am about to go in for an important test or something, really adrenaline-ised and cortisol-ed. It has got better this evening, thankfully, as I might be able to sleep...
I am now thinking - do I really need HRT yet, or was all this just caused by desogestrel suppressing my estrogen really low, after 9 years on it... My FSH was only 4 when tested last year, so I should still be producing estrogen and the ovaries should not yet have failed(!). I wasn't sure if the utrogestan at 200mg nightly would suppress them like the desogestrel - but maybe it doesn't. It would be amazing if it suppresses my endo whilst allowing my ovaries to contribute estrogen. (Unlike desogestrel.)
Of course, I should be able to use a 25 patch whatever - even if I have my own estrogen, it's hardly a high dose. But perhaps I am really sensitive and there is a low-ish range that I am comfortable in and my own estrogen is taking it too high with the patch as well now.
I'm going to keep the 25 patch on for the doctor's appointment tomorrow but then I might take it off and see how things go - and do a Medichecks test not on any estrogen except my own... (Although I know that can vary.)
I don't know if the doctor will take my blood pressure tomorrow, I was going to try to stay focussed on the VA symptoms because I will be talking for 5 hours if I try to tell her everything. My plan was to focus on the VA and get an exam and hopefully get her to prescribe Vagifem daily - and potentially return another day to address the estrogen side effects, heart palps and all that side of things. Meanwhile, to trial stopping estrogen... I haven't had any discharge today at all, these last 3 days with daily Vagifem has been a steady improvement again. So it is quite tempting to chicken out of the exam. But then I thought, just for my own peace of mind, maybe I should go anyway. I mean, women in the US have ANNUAL routine pelvic exams ;D They don't hurt me, but I do get anxious about the lack of control. (I'm a control freak.)
I will stay on utrogestan though, because it is working to suppress the endo so far. And I'd far rather be on that then synthetic progestin like desogestrel again. And any time I feel estrogen dipping, I can easily add a low patch in again...
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GO Joziel Go! Try not to overthink it now and just go with the flow.
You will learn from the experience, the only thing to ask, as you say, is what is my priority for today.
Good luck xxxx
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Yuck here I go again it’s 3 am and about an hour ago I was woken up with tachycardia and high blood pressure. I was so dopey it took a while to get the BP monitor on but it was 180/83 so pretty high but it went down to normal over the next three minutes. So I don’t feel a fraud going to see the cardiologist now! I do still feel heaps better from being back on the Oestrogel in between the episode today so maybe the GP is right and this is actually not linked to HRT at all.
Joziel… hope so much your doctor‘s appointment goes well and that the doctor is nice knowledgeable and helpful. Please let us know how it goes and I will do the same after my appointment today xx
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Pippa, what you're experiencing really interests me because it's also what I'm experiencing. Even though I'm getting reasonable sleep at the moment, if I wake during the night, I'm aware that my heart is fluttering and I feel high blood pressure-y (pulse-y). A couple nights ago the pulse we have kind of between our lower ribs was beating really hard too. And my heart rate can also be much faster than usual. It can feel like there's something on your back, somehow. It feels like something that is being done to you, and not a normal response of your body to what's going on in your mind.
Then I will have times when I feel totally fine. And it seems to mystify every doctor I've mentioned it to. Which is why I'm really curious if you get any answers...
For me, this all started when I began HRT. It gets worse the more estrogen I have, and better the less I have. And it happened when I was 21yo and took a synthetic estrogen combined pill as well. So for me, it is a reaction to estrogen. I have no idea why it makes me react like this though, or what the implications of this are for me being able to take HRT. I am just hoping that if I stop the estrogen, this will go away as well. That might not be a great solution for the future but at least I don't then have a heart condition to treat...
I'm really interested to hear what your cardiologist has to say. I worry that there isn't a solution except being put on meds like beta blockers - and there can be side effects to those when taken long term.
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I imagine you have both already tried this, but just incase not, what about magnesium? It does seem to help a lot of people with problematic heart beats.
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Hi both, I’ve been off the site for a while. I know you were exploring histamine for a while joziel? Just because your symptoms are so similar to mine. I get the heart throbbing and fluttering. Always worse in the night and waking. Mines all down to histamine and mast cells. I can’t take estrogen as actually my own is what’s causing the problem! I mistook for peri a few years ago.
Have things gotten worse since coming off the pill or better?
Is coming off the E all together an option joziel?
And interesting what you said a while back Pippa about you were ok until oestrogel changed the formulation. I was ticking along on Estrogel (with a few what I now know as high histamine symptoms) but when I got Oestrodose from the pharmacy I felt absolutely awful. Mentally I was so depressed, anxious, jittery. Allegedly the same stuff but clearly there is a difference to those of us who are sensitive.
Anyway I went up to three pumps when back on the estrogel and then it all hit the fan and my histamine levels hit the roof. I’m now off all estrogen and probably never needed it as my FSH is low and actually estrogen (especially rising estrogen) is my enemy now! Not saying this is your issue but just some more info anyway x
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Gnatty, already on magnesium bisglycinate 400mg/day.
Scampidoodle, my low histamine diet made zero change to my symptoms. I am taking quercetin 2x daily anyway, but I don't think it's histamine. Can histamine cause high blood pressure? Why would my REALLY STRICT(!) low histamine gross tasting diet not have helped?? I have some DAO but I haven't even tried taking it yet. Maybe I will start to take it before meals and see if it helps at all. (I do think I had a slight allergy to cow's dairy, since I have been on sheep and goats dairy only for a couple weeks and my runny nose and watery eye appear to have stopped - gee - how many suboptimal things do I have going on?? I thought that was low estrogen too, but turns out to be cows dairy - thanks Lara Briden for that one... )
SO - AN UPDATE!!
Today I saw this new GP and SHE WAS EXCELLENT!! She didn't have all the answers for everything I'm experiencing, but she LISTENED, she was quiet and attentive, she wasn't a big personality, and she really thought about things and we both sat there unable to make sense of my "why is this happening?" question.
As I said above, I didn't plan to tell her about the blood pressure and palps today - because I thought that would be too much to go into. But I mentioned it in explaining why I'd had to reduce my estrogen to 25 patch - due to estrogen side effects. And she wanted to know more.... So I told her everything.
She took my blood pressure which was 163/90 or something horrendous. She took it twice. The irregular pulse icon was on. I said that always comes on, when I use my home blood pressure machine too. She listened to my heart and said I have a lot of ectopic beats. She said that can be normal, but it's a lot. That's why the icon is coming on.
We talked about this all beginning since I started HRT in March. And that it gets worse, the more estrogen I take - and better, the less I take. And that the same thing happened when I was 21yo and went on a combined pill. We stared at each other in shared complete lack of comprehension about why this is body identical estrogen, the same stuff my own body makes, and I am only on a really low patch at the moment - and it's still happening. Even if I don't need this patch, I should be able to take 25mcg of additional estrogen without all this... it's very safe stuff(!).
So the upshot of what we decided was: I am to come off all patches/estrogen and see what happens. I have already ripped the patch off ;D I am to have a review with her in 4 weeks. If all this is still happening then, I need a cardiology referral. Because maybe it's just a coincidence that it is happening now, having started estrogen. Maybe I have some heart stuff going on.
If it stops and I don't need additional estrogen now (because my ovaries are making some, now I've come off desogestrel) then everything is great - for now. It's not going to be great when I do go through menopause and I do need estrogen... I might have to just accept I can only have a very very low dose of it and hope that is enough for SOME protective health benefits.
If the cardio symptoms stop and I get peri symptoms back and need estrogen now, then I need a referral to gynaecology who will help me - there are some other meds which can treat symptoms, although of course they won't have the same health benefits as estrogen.
And then... With the discharge situation, she said the pale colour was fine and she couldn't see any sign of LS or LP. She said the cervix and vagina looked fine. She did a swab for thrush and BV but she said she doesn't think it's either. She thinks it is probably just my own discharge starting up again now I'm on estrogen and have stopped desogestrel and maybe now my ovaries are being more active - even though I'm still on 200mg of utrogestan.
I'm not sure about that, because why am I getting burning and stinging in the vulva and why does the discharge feel acidic when it comes out... She didn't seem to know much about vaginitis-es and other things this could be. So we have decided I can have daily Vagifem for some months because it seems to be pretty much fixed with Vagifem(!), but if I need Vagifem daily ongoing then I will have a referral to gynae to be sure nothing else vaginitis-like is going on, and to approve that because it's off licence. Or maybe I can get an e-string.
Lastly she asked about my thyroid as a possible cause. And I told her I'd had TSH and free T4 done and that was all they would do. But I think I am now going to do the Medichecks 'everything' thyroid panel including thyroid antibodies, just to be sure.
So - no magic answers or solutions, but I've taken the patch off and now we shall see what happens. It might be a few weeks because the palps and blood pressure took about 2-3 weeks to start up when I began HRT, so it might not be a quick change...
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That sounds like a very thorough consultation Joziel, you must be pleased.
Even though she didn’t have all the answers she listened as you say, which is half the battle. She sounds like your best doctor yet!
I had a consultation with my meno specialist today and we talked about bladder pain as I had a flare up yesterday. I do not have VA (as yet) but every now and then I get cystitis and intense burning.
When this happened yesterday I took 1/2 teaspoon of bicarbonate of soda and within an hour it had gone. I told her this and she confirmed that, yes if it feels acidic this is a good remedy, not to be used too often as your bladder needs some acidity to prevent infections. She has a patient who drinks alkaline water but she said b of c works just as well.
The cause is more difficult to establish, but I think it was because I hadn’t taken any zinc for 4 days which is unusual for me. I only take 15mg which I find is just the right dose. As with everything too much can cause the same symptoms!!
Anyway, that’s my two penny worth, but I’m really pleased for you that you have found a good GP at long last.
M x
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She is most definitely my best doctor yet ;D
The bicarb of soda is what you're supposed to do a sitz bath or douche with if you have cytolitic vaginitis - but I'm reluctant to do that without knowing that's what I have or I could upset the pH in the wrong direction ;D
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Yes you could!
CV is not a recognised condition but it very much exists! I’m afraid it’s a suck it and see situation. If you decide to trial this, do what I did and just drink some in water rather than going all out with sitz bath or douche?
That way you’ll get a lesser effect but you’ll see if you’re on the right path. X
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joziel - WOW I am so pleased that your GP was so good and actually listened. It sounds as though you really covered a lot in your time which is great. Very best of luck coming off the oestrogen patch and so hope that it really helps. It is just such a relief to talk to someone who works with you and understands isn't it x
SO MY UPDATE :)
Cardiologist was wonderful so kind and reassuring. He looked through my Kardia ECG's and BP readings and said there is absolutely nothing wrong with the rhythm of the heart no AFib etc just a fast heart beat and although my BP seemed horrendous to me when he took it (170/90) he said it was nothing to worry about because the peaks go down really quickly and the rest of the time it is normal. Now the really interesting bit - he said he has seen a lot of ladies who have had to change HRT makes or doses have been presenting to him with very similar symptoms and he feels that the most likely cause for me is just that. He is pleased I am back on my original HRT (Oestrogel) and wants to see me in a months's time. He also is arranging Thyroid tests and 24 hour urine collection. He said those are to just be very thorough but he does not think it is either of those causing the problems. In the meantime I have to sweat it out (literally lol) and give the oestrogen time to level out and to stay at the dose I was always on originally. Although it's grotty having to be like this I absolutely see his point and he felt that this should settle down over the next 4 weeks or so. He thinks also there is a component of anxiety in there due to the symptoms but that should settle too. He is arranging some counselling CBT to help. I feel hugely relieved (as I am sure you to do after your appt) in that someone has listened and understood and has some answers. Maybe just maybe we both might get a bit more sleep tonight!!! xx
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I imagine you have both already tried this, but just incase not, what about magnesium? It does seem to help a lot of people with problematic heart beats.
Thank you Gnatty will definitely look into this xx
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Hi both, I’ve been off the site for a while. I know you were exploring histamine for a while joziel? Just because your symptoms are so similar to mine. I get the heart throbbing and fluttering. Always worse in the night and waking. Mines all down to histamine and mast cells. I can’t take estrogen as actually my own is what’s causing the problem! I mistook for peri a few years ago.
Have things gotten worse since coming off the pill or better?
Is coming off the E all together an option joziel?
And interesting what you said a while back Pippa about you were ok until oestrogel changed the formulation. I was ticking along on Estrogel (with a few what I now know as high histamine symptoms) but when I got Oestrodose from the pharmacy I felt absolutely awful. Mentally I was so depressed, anxious, jittery. Allegedly the same stuff but clearly there is a difference to those of us who are sensitive.
Anyway I went up to three pumps when back on the estrogel and then it all hit the fan and my histamine levels hit the roof. I’m now off all estrogen and probably never needed it as my FSH is low and actually estrogen (especially rising estrogen) is my enemy now! Not saying this is your issue but just some more info anyway x
Hi Scampidoodle - re the Oestrogel they changed the formulation from estradiol 17b to estradial hemihydrate which I have since found out makes it slightly weaker and all I would have needed to do was up the dose slightly but sadly although I did ask the GP and the Pharmacist this did not seem to be known last year. I have read that Oestrodose seems to be weaker too as many ladies have reported their symptoms returning. I am so glad that they have found out what your problem is and hope so much you are starting to feel better off it? xxx
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I’m pleased you both found doctors who have listened and are willing to help. I wish you both luck!
Was your cardiologist on the nhs Pippa? If so then he was very thorough, you’re normally in and out! Interesting about the different formulations and how they can impact those of us who are very sensitive to changes.
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Scampidoodle ….Thank you for your kind words :) Sadly no I had to go private :( waiting list on the NHS was many months and to be honest have been feeling that ill I just really really needed answers and reassurance as this has been going on for months now. Yes you are so right even small tweaks in doses can have a big effect for some of us especially when also having to change types as well xxx
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Thank you for sharing with us all Pippa. This is so very useful to all of us.
So pleased your consultation went well and that your cardiologist is so thorough.
It’s a new insight from him that the change of delivery and dosage can cause such symptoms and that he’s been experiencing it quite a lot. I think quite a lot of members had experienced this.
But what’s more astonishing is that a cardiologist has such knowledge of hormone issues and has recommended thyroid and adrenal tests.
Sounds like a find Pippa!
Good night lovely ladies xxx
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That's great Pippa! So, do you go back to see him in 4 weeks time? It must be really reassuring to have had someone tell you it's okay and although it feels bad and distracting, you're not going to collapse or anything...
How does he know that your blood pressure comes down soon afterwards? Are you measuring it at home? I feel like mine is constantly too high. My fingers feel tight, a bit like rubber gloves blown up a bit... my feet and ankles feel trembly and twitchy and I feel like there is something on my back or across my back, some constant pressure. When it eases, it is sooooo calming and relaxing and I think 'wow, this is how I used to feel all the time....'. I don't think the heat helps either, I'm sure being hot increases your blood pressure and it was really hot today.
The GP today tried the 'it could be white coat syndrome' thing, but I was like.... mmmm .... nope. And anyway, if you look at the blood pressure I had taken just before I went onto HRT, it was literally perfect - and that was at a doctor's. I have come to recognise what it 'feels like' to have high blood pressure now...
It is interesting he has seen so many women on HRT with this. But I'm not sure he's got to the root cause of it.
I reckon Scampidoodle's histamine intolerance idea is still very interesting. I know I tried a low histamine diet and it didn't do anything, but if I have all my life teetered on just about being okay with histamine - and then I add in extra estrogen, including going up to quite high doses of patch - when my ovaries perhaps have also started to make my own... well perhaps just eating low histamine wouldn't have made much difference at that point. It was just a drop in the ocean. And now I've had quite a flare up through staying on it and maybe mast cells have gotten involved, who knows.
I am going to increase my vitamin c doses to 4x daily (natural anti-histamine), take DAO before eating (since I bought it anyway and then never used it!), keep going with the quercetin 2x daily, take the L-glutamine I bought but keep forgetting to use... but I can't do the low histamine diet again, I just can't :-\ :-\ :-\ Maybe I will if all that lot doesn't work...
If I have to go back onto HRT because I get peri symptoms coming back - and at some point I will need HRT - I will try to see if I can see Tina Peers or someone in her meno business who can try to help me do that alongside trying to keep histamine low and maybe some mast cell stabilisers. I probably will only be able to have a very low level of estrogen, but it's got to be better than nothing. I also think something I can take in the morning - estrogel or Lenzetto - which will hopefully wear off slightly come the middle of the night, is a good idea too - rather than patches. If histamine peaks at night, and a patch gives you estrogen 24/7 constantly, that's probably not a good combo.
It might not be histamine, but if it isn't that, I'm stumped for any explanation whatsoever - and I have to work on the basis of something...
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Definitely no better yet. Pulsing and throbbing. I can feel the blood moving around my body. I wonder how long it will take for this to go. I’m a bit worried about living with high blood pressure like this.
ElkWarning, how long after you stopped HRT before your blood pressure returned to normal? I saw from your posts that even bp meds weren’t enough to control it when you were on HRT?
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Pippa just a thought about you getting back to three pumps of oestrogel - now that you are applying it differently you may be actually absorbing more than you were previously, this might have a bit of an impact so that maybe you might not quite need three pumps but more like two and a half, particularly to start with.
Joziel, from your post it looks like another night of rubbish sleep. I do hope the hrt gets out of your system soon it must feel never ending. X
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How’re you doing Lilleth, not heard from you on this thread for awhile.
Has your insomnia settled?xx
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Pippa just a thought about you getting back to three pumps of oestrogel - now that you are applying it differently you may be actually absorbing more than you were previously, this might have a bit of an impact so that maybe you might not quite need three pumps but more like two and a half, particularly to start with.
Joziel, from your post it looks like another night of rubbish sleep. I do hope the hrt gets out of your system soon it must feel never ending. X
Gnatty … thanks so much for your message. Funnily enough I thought exactly the same and I reduced the dose down last night to 1 and 1/4 pumps twice a day so that cuts out half a pump. I’m stupidly sensitive to small dose changes so hopefully that will now be enough. The ‘pat’ method of applying works really well there is none left over. I also slept through till 6am xxxxx
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Thank you for sharing with us all Pippa. This is so very useful to all of us.
So pleased your consultation went well and that your cardiologist is so thorough.
It’s a new insight from him that the change of delivery and dosage can cause such symptoms and that he’s been experiencing it quite a lot. I think quite a lot of members had experienced this.
But what’s more astonishing is that a cardiologist has such knowledge of hormone issues and has recommended thyroid and adrenal tests.
Sounds like a find Pippa!
Good night lovely ladies xxx
Ah bless you I hope it will help others. Thank you so much for the lovely message .I was so very lucky to see such a lovely cardiologist he could not have been kinder or more informative . I feel a lot less stressed today which I am so grateful for …still getting some physical symptoms but quite expected that it won’t clear up
Overnight . Xxxx
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Definitely no better yet. Pulsing and throbbing. I can feel the blood moving around my body. I wonder how long it will take for this to go. I’m a bit worried about living with high blood pressure like this.
ElkWarning, how long after you stopped HRT before your blood pressure returned to normal? I saw from your posts that even bp meds weren’t enough to control it when you were on HRT?
Joziel …. So very sorry to hear your symptoms haven’t improved as of yet. Fully understand your concern about the blood pressure as I was just the same. If it’s any consolation the cardiologist was very clear that neither the high blood pressure or the fast heartbeat was anything wrong with either the heart or the blood pressure it is purely an affect from the changing levels of oestrogen and the changing of the delivery method. He said as long as your BP is not consistently high all the time and only spikes and then goes down reasonably quickly it is not classified as high BP. The reason my skin reacted to Lenzetto was because there is a sunscreen chemical in it and I can’t use chemical sunscreens anyway but had no idea there was one included in the Lenzetto. I prefer the gel anyway as so easy to control the dose. As we all know it does take quite a while to level out and he seemed very confident that that is what would happen over the next month so time will tell. As your symptoms are quite similar it may well prove the same for you when you have been off the patches for a while? . Honestly I think all us ladies could all be writing an ‘how lo cope with menopause ‘ book!!! ;D What a journey !!!!
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Re: Too much estrogen or not absorbing ?
« Reply #188 on: August 10, 2022, 09:20:28 PM »
joziel re your post ....''That's great Pippa! So, do you go back to see him in 4 weeks time? It must be really reassuring to have had someone tell you it's okay and although it feels bad and distracting, you're not going to collapse or anything...
How does he know that your blood pressure comes down soon afterwards? Are you measuring it at home? I feel like mine is constantly too high. My fingers feel tight, a bit like rubber gloves blown up a bit... my feet and ankles feel trembly and twitchy and I feel like there is something on my back or across my back, some constant pressure. When it eases, it is sooooo calming and relaxing and I think 'wow, this is how I used to feel all the time....'. I don't think the heat helps either, I'm sure being hot increases your blood pressure and it was really hot today''
I was told to take my BP morning and evening before seeing him when I was not getting symptoms of high BP or fast heart rate to compare it to the episodes and also to take it when I feel it is high or if I am having tachycardia and monitor it over the next 10 - 15 minutes afterwards. It goes up to 180/91 or so and once 190/91 but all times within 5 - 10 minutes it returns to normal (120/80 or lower for instance the other morning it was 111/60 - I have always had really good low BP which is why these episodes concerned me so much) He explained to me this is not high blood pressure as such it is just the effect that the oestrogen changes are having on my body. Yes hot weather can definitely raise BP a bit and also in the heat the blood can get a bit thicker so harder for the heart to pump round which is why staying well hydrated is so important he said. xx
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Very interesting! Although I am left thinking that they might not classify it as high blood pressure, but it's not possible to live like this permanently - whether or not any doctors appear to be concerned by it ;D ;D So I hope you do see everything settling down now Pippa.
I don't know how you've managed to take your blood pressure so much without ending up a nervous wreck. I hate the idea. In fact every time I think 'am I still pulsing?' it's enough to make me poop myself... ;D Let alone that horrible feeling of the blood pressure machine tightening and worrying what the result will be and trying not to watch all the numbers, and then the stab of fear when you let yourself look and it is high :-\ :-\ :-\ ??? which causes a rush of cortisol and adrenaline, and then comes the frustration with yourself because that means it's only going to get higher ;D ;D ;D oh good lawdy.... who'd have thought how much I could overthink taking my blood pressure, I give up with myself ;D
I don't think mine is coming down, at least maybe it will now start to, since I stopped estrogen - but really it's just ongoing and constant now, which has been a change over the last week or two before which it seemed to be happening only at night.
I guess the good news is I don't have any low estrogen symptoms again yet ;D
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Joziel …. I hear you I really do re taking BP. Over the years I never have taken my BP as like you it freaked me out same as heart rate. I truly did not have an option but to do it recently as the info was needed or I would have had to wear a 7 day machine thing plus it was suggested putting a loop under the skin which records it 24/7 with a procedure which I wanted to avoid at all costs if possible. Bizarrely now I have done it quite a lot the fear is dying down and also having been told by the consultant that I don’t have high BP I feel more relaxed about it all. I guess knowledge is power in that at least he has it all recorded on my notes as proof of the readings . I don’t have to take it any more now just have it checked at HRT check ups. That being said I totally understand how you feel about .. it is worrying and scary when you just don’t know what is going on with your body :( Really glad to hear you have no low oestrogen symptoms that is great news xx
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Thanks Pippa. Hoping you have a good night and start to see the nightmare end :)
I am still pulsing away, pretty constantly. For some reason I feel it now mostly in my feet which are tingling almost. It's actually hard to concentrate on what I'm doing with my feet tingling and pulsing like this! I end up jiggling them just because twitching them helps me be less aware of the tingling.
The estrogen most definitely has to have left my body by now. So this is not an on-off thing. However it didn't start instantly I started estrogen either so perhaps I have to give it some time.
I am loaded up on vitamin c 4x daily (natural antihistamine apparently), quercetin x2 daily (natural mast cell stabiliser), L-glutamine (natural anti-histamine) and have had 3x DAOs today before meals (extra help for processing histamine). Plus utrogestan is supposed to be an anti histamine and I have 2x of those every night ;D ;D Surely that lot should do the trick!?
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Arrrggg. This isn’t getting any better. In fact it’s just ongoing and constant. I am worried my bp is dangerously high especially at night.
Maybe I should phone the dr tomorrow and ask for some bp meds. Otherwise I don’t know if I’m going to end up in hospital to control this.
I don’t know how I can then tell if I’m feeling better due to meds or estrogen but perhaps once I’ve stabilised I can wean off again.
It’s all a nightmare. It used to happen only at night I thought but now I think it was happening during the day too just less so I wasn’t as aware of it.
I’m a bit worked that bp meds will have their own side effects. Does anyone know much about that ?
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Hi joziel
So sorry you’re feeling horrid still. I’m not sure if your doctor will just give you blood pressure meds without out you monitoring your BP for a week.
It doesn’t sound like a histamine thing with the amount of natural antihistamine’s you are taking, so what is causing it!
I just came across this.
http://www.hormonesmatter.com/blood-pressure-progesterone-mineralocorticoid-receptor-mutation/
Apparently in some women with a certain gene mutation progesterone can cause high blood pressure. I’m not saying this is you but it’s something to consider.
Are you taking it cyclically? In which case I wonder if your BP drops when you take a break?
Could you perhaps see the same cardiologist as Pippa, who sounds very knowledgeable and lovely.
M
x
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Thanks march. I doubt I live anywhere near Pippa and at the moment the thought of just driving to the doctor is hard let alone flying anywhere.
I don’t think it’s progesterone reading that:
“For women who carry this gain-of-function mineralocorticoid receptor mutation, high blood pressure emerges early, before the age of 20 and, for all intents and purposes, is refractory to the normal lifestyle changes and many medications that reduce blood pressure, except perhaps diuretics. The high blood pressure often becomes severe during pregnancy. It may also become severe with any drug that increases progesterone or decreases aldosterone including with oral contraceptives, synthetic progestins (medroxyprogesterone, micronized progesterone, prempro and related), ”
I’ve never had ongoing high blood pressure before HRT. I’ve been on levonorgestrel and desogestrel almost all my adult life with no change in blood pressure.
I could stop utrogestan and switch back to desogestrel but im a bit reluctant to make such a big change when I don’t seem to fit the above and body identical progesterone is much better for me. And when I ended up in my current mess of very low estrogen due to desogestrel. But I could try it for a few days just to see if this stops I guess. Although… maybe that would just be a coincidence and time would have passed. I’m not sure what to do.
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PS I’d been thinking about the genetic thing but in relation to estrogen. My maternal grandmother lost many babies during pregnancy to blood pressure related stuff - not sure if pre-eclampsia - and estrogen is high during pregnancy.
It happened when I took a combined pill with estrogen at 21yo. But I didn’t take it very long because as soon as I felt like this I just switched to a POP.
I’ve taken HRT much longer and feel like my body has got itself into this state and can’t stop or get out even tho the precipitating factor has gone. But I was taking HRT for 3-4wks before this all started so maybe it will take that long to stop… I hope not.
I have a lot of other estrogen sensitive stuff like endo…
Although I’ve stopped the HRT my own body is now making estrogen again we know. But this is a good thing because I also need it!
And with the mast cells I think it can take a long while to quiet them down with all that, if it is histamine it again might not be as simple as just taking those supplements and feeling better a day later. I could add in some type 1 and type 2 anti histamines as Tina peers suggests….
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Very difficult for you joziel.
I’m presuming then you are on continuous.
Perhaps it’s just the micronised progesterone your body doesn’t like, or even the fillers.
If it was me, I’d give it a go, or try 100mg for a few days first to see if anything positive happens.
At least you could rule it out. X
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If, and that’s a big if, it is one of the fillers say, it might be the soy in Utrogestan
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1181821/
Or it might not be that at all x
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I've phoned my GP and left a message telling her what's happening, which has been emailed to her. But she might not get it until Monday because she has a full surgery today apparently... In my message via the typing away receptionist, I asked if she thought it might be a good idea for me to have a referral to cardiology. I don't think they will put someone on blood pressure meds if they have had fine blood pressure all their life, are slim and healthy - and then suddenly acutely get what I have. And I don't think I want to consider BP meds at this point, long-term. That isn't treating the cause. So maybe checking my heart out and a chat with a cardiologist is a good idea.
I'm not allergic to soy in any other way, I've eaten it all my life. I've always eaten tempeh and soy products off and on.
I'm a bit stuck with the progesterone idea - I need progesterone to suppress endo. (Yes, it's continuous at 200mg.) So I can't not be on anything, or I will be hit by heavy periods and endo pains. If I go back on desogestrel (which I've been on for 9 years without this happening) I will end up with low estrogen again, although perhaps I could do it for a few weeks without that, just to test the progesterone theory. At the moment it's premature to change anything having only stopped the patch 36 hours ago.
Besides, it doesn't fit with the picture in the article marchlove, where they describe someone who has had high blood pressure from a young age who gets it worse if they take any progesterone or progestin, including utrogestan. Because I've been fine for 9 years on levonorgestrel and another 9 years on desogestrel and never had these blood pressure symptoms before.
I wasn't on any hormones for 5 years from 30-35yo and didn't have these symptoms.
The only time I've had anything like this, was on a combined pill - Microgynon. I was a uni student. I have memories of lying on my bed in my student accommodation, feeling like I was pulsing at night. And of sitting in the library, trying to write a paper on the computer there, feeling throbby and weird. I switched to a POP which had the same progesterone (levonorgestrel) as that combined pill. The blood pressure and pulsing stuff went away shortly after I cut out the estrogen. I can't remember how long it took to go, I really wasn't that bothered about it at the time because I knew it was the pill and that if I stopped, it would go away - and there are many other ways to not get pregnant besides a combined pill, so I didn't need it...
So I'm pretty sure it's the estrogen. With the HRT, the symptoms also got worse, the more estrogen I took - and better, the less I took. Until these last few weeks where my body has just gone into feeling like this all the time. Once I am through all this for now(!) I need to figure out what the heck is going on because at some point in the near future I will probably need estrogen again. I think I might need to be ridiculously gradual about phasing it in and perhaps never get higher than 25mcg or some low dose.
I am pretty angry about the gung-ho attitude from the meno doctor about just casually increasing it, even after I told her I went to A&E with these symptoms... These big fluctuations and (for me) huge doses have just created all this, I think.
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As you say you haven’t been off the patch that long so worth waiting a bit longer.
I think a cardiologist would be a good idea, hopefully one with knowledge of sex hormones, though don’t expect there’s many of them about.
As you do rightly say you need to know the cause and not just have a sticking plaster with BP meds!
It probably it the estrogen as you say and taking a minute dose would be the way to go.
Just have a look at the other fillers in Utrogestan before you dismiss it entirely, to see if there’s any link with BP.
You’ll find an answer for sure x
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joziel - whereabouts are you in the UK? The cardiologist I saw is fantastic and works from London and Kent. You may well be the other end of the country but thought I would ask - feel free to pm if you want to. Also just to say having seen the consultant although I am still getting the symptoms it's taken the worry of not knowing why I was getting the high BP spikes and other symptoms away which is definitely a big plus x
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The lovely GP I saw called me back just now. She is going to refer me to the disrhythmia clinic. She also wanted me to do blood pressure readings 2x daily ARRRGGG ;D What time should I do these? And should I attempt to capture what is happening through the night??
The irony of all this is that no one is going to help me unless I prove I have a blood pressure issue (claiming pulsing hands and feet probably isn't enough ;D ) yet when I do the test and it is high, I freak out ;D ;D ;D
I do feel like the blood pressure is the main issue and the heart palps would go away if the blood pressure was normal. I think that because the Kardia device told me I had 'Sinus Rhythm with Wide QRS' and that one possible cause of that is high blood pressure....
I'm just a bit concerned no one is going to be thinking 'hormones' in all this.
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The lovely GP I saw called me back just now. She is going to refer me to the disrhythmia clinic. She also wanted me to do blood pressure readings 2x daily ARRRGGG ;D What time should I do these? And should I attempt to capture what is happening through the night??
The irony of all this is that no one is going to help me unless I prove I have a blood pressure issue (claiming pulsing hands and feet probably isn't enough ;D ) yet when I do the test and it is high, I freak out ;D ;D ;D
I do feel like the blood pressure is the main issue and the heart palps would go away if the blood pressure was normal. I think that because the Kardia device told me I had 'Sinus Rhythm with Wide QRS' and that one possible cause of that is high blood pressure....
I'm just a bit concerned no one is going to be thinking 'hormones' in all this.
joziel - that's so good you re being referred that is great news. I understand about taking your BP and how you hate doing it and why as you know but one option maybe could you get your husband to write down the reading for you when it is done so that way you won't have to see it at the time? I was told to take mine morning and evening and 3 readings each time if that's any help. I was really scared when I saw my reading of 190/91 having always had low blood pressure in the past so the relief of seeing the cardiologist and him assuring me it was not dangerous as it was only a spike has been amazingly helpful. It might be a good idea to capture a reading when you have symptoms at night - I did - as then they can compare them. Anxiety does push it up of course too. I was told to sit quietly for 10 mins each time before taking the readings morning and evening too and I did Kardia readings when my heart was going fast as well. It appears my problems most likely are due to hormones plus the fact that he has seen several other ladies with the same problem since the HRT shortages and them having to chop and change medications and doses so it means you could well be the same but so glad you are going to get it all checked out I honestly think it will really help you. Knowledge is power as they say. Fingers crossed for you. xx
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Pippa, that's great. I will do that. When they say 'morning and evening' to take it, do they mean like - waking up and 11pm?? Or 10am and 8pm...? Or it doesn't really matter as long as I'm consistent?
I think I'm also not supposed to do it within 1hr (?) of working out...
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Pippa, that's great. I will do that. When they say 'morning and evening' to take it, do they mean like - waking up and 11pm?? Or 10am and 8pm...? Or it doesn't really matter as long as I'm consistent?
I think I'm also not supposed to do it within 1hr (?) of working out...
I did it at pretty much the same time each day am and pm and no defo not too soon after working out they want a resting BP reading xx
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Ok thanks. I'm going to start this in the morning :-\ Before the workout ;D
I am feeling better this afternoon, less throbby. I feel like I could basically give you an estimated blood pressure reading just by how I feel. ;D Not sure the GP will accept that though ;D ;D ;D
I might do several weeks of this whilst I wait for my referral to come through. Because perhaps it is going to drop gradually over the coming weeks and just doing it one week now won't reflect that...
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Joziel … it’s certainly won’t hurt to do it for longer longer than a week it will give the doctor a really clear idea of what has been going on x
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Arrggg.
Not any better yet.
I might have to try stopping utrogestan and switching to desogestrel for a week to see if that helps….just to rule it out. If not, I can switch back… I was on it for 9 years with no probs like these….🤔
Or I could just stop everything. I might get some endo pains but I doubt anything bad in two weeks.
It’s getting worse if anything and I’m starting to get really worried.
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Arrggg.
Not any better yet.
I might have to try stopping utrogestan and switching to desogestrel for a week to see if that helps….just to rule it out. If not, I can switch back… I was on it for 9 years with no probs like these….🤔
Or I could just stop everything. I might get some endo pains but I doubt anything bad in two weeks.
It’s getting worse if anything and I’m starting to get really worried.
If it’s any consolation I’ve just had an awful night with precious little sleep. Anxiety off the scale for no reason . That being said I know nothing awful going on which is huge relief but the symptoms are hard to deal with. I am aware I’ve only been on the dose I am with the oestrogen for one week so it’s very early days and I appreciate early days after months of change of types and dose but jeeeez it’s hard coping with it all sometimes isn’t it. So very sorry to see you are still struggling to. I was listening to the Calm app for anxiety most of the night and it kept repeating that all the symptoms will eventually pass and I’m sure they will for both you and I but it just seems endless at the moment. x
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Mine just seem to be constant now. I’m so sorry Pippa that you are still dealing if with this. It is all very rubbish. I just want my life back now. I feel like I’m not an emergency enough to be at A&E but I get worried that’s where I’m going to end up soon….
I’ve decided to investigate the idea of the utrogestan causing this. I’ve been okay with POPs before but perhaps that’s because the dose is so tiny (mcg compared to mg of utrogestan) or perhaps it’s due to the fact they work differently chemically to real progesterone.
And also I was okay not on anything for 5yrs without these symptoms (with my own progesterone) but your body doesn’t constantly make high amounts of progesterone throughout the month. So perhaps I recovered when levels change. I didn’t have these symptoms the first couple weeks on HRT after all. And. I wouldn’t have made any progesterone during anovulatory cycles.
I feel like the dose I am on at the moment must be a dose which mimics pregnancy really to suppress my ovaries and stop endo (200mg continuous) - and look at my gran and all her miscarriages during pregnancy due to high blood pressure. Which I was told wasn’t pre-eclampsia but “something else”.
SO I have about 24hrs to decide if I should stop everything for a couple weeks or if I should switch to desogestrel….????
OPTIONS.
Thoughts?!?
If I stop everything my ovaries will wake up some again and I may bleed or my uterine lining might thicken (it’s very thin at the mo after 9years on desogestrel). I may also get my old familiar endo twinges back which are very manageable now I know what they are. But hopefully over 2 weeks it would be ok. Then I’d need to decide what to do, if the blood pressure resolved. I do like the idea of being natural as possible and I don’t like the idea of synthetic progestins… I have over-hauled my diet and added in all the Lara Briden recommended supplements to treat endo. But I’m the sort of person who might end up with heavy clotty peri bleeds.
If I go back on desogestrel nothing exciting will happen. It is a progestin but I was on it for 9 years without these blood pressure symptoms. I won’t bleed or have endo symptoms. But it’s not a long term solution for me because it suppresses my estrogen too much, kills my sex drive and gives me migraines.
Neither of these need to be long term options but to trial the idea of this being caused by utrogestan…
After that I don’t know what I do if it’s the utrogestan… 🤷♀️ But maybe that’s another thing to talk about then.
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I’m so sorry to hear Pippa and joziel that you are both still having such an awful time.
I think Joziel that you’ve been off the patch for long enough now that it certainly could be the Utrogestan that is causing these issues. It seems that for whatever reason your body does not tolerate it.
Many are in the same situation, not specifically for it potentially causing high blood pressure, but nether the less you need to rule it out as being the cause.
I can’t advise on whether you should stop everything of carry on with the desogestrel, it’s such a personal choice. Hopefully whatever you decide will get you to a better place than where you are now xx
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Well morning blood pressure today was only 112/76 ???
What’s going on….?
Now really not sure what to do. :-\
Will see what it is later.
Maybe the issue is more my heart and the ectopic beats than my BP 🤷♀️
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joziel - that's such a good and reassuring sign. It means you don't have constant high BP - just like the Consultant I saw said. I honestly would take a lot of comfort from that. My symptoms are still utterly crap yesterday evening and last night but it really does help knowing it's not BP or heart related. I know it doesn't help with the symptoms you are having to live with right now but it is a very good sign I honestly do feel. Re your concerns re your heart. Maybe try taking another Kardia reading both when you feel your symptoms are at their worst and also at any point if they feel a bit better so that can be compared and shown to your specialist at your appointment? That way you have all the info to give him straight away. xx
Marchlove - thank you for your kind and lovely messages bless you. So sweet of you to message us x
In desperation in the wee small hours I ordered a Medcheck finger blood test as I really want to know just where my oestrogen level is at right now. At least it would give me some sort of guide. Will wait for another week or so before doing it anyway but just need to know if I am heading in the right direction at least level wise even though it's the symptoms that I need to go by I will at least get a rough idea of what is going on oestrogen wise anyway. xx
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Pippa not sleeping is so awful for anxiety and of course these temperatures make it worse. If it were me, whilst waiting for everything to settle I would be looking to take something at bedtime to help sleep just to take away the anxiety of will I or won't I sleep. So maybe a heavy duty antihistamine or a good load of valerian etc whatever works for you. Another option might be CBD oil. I have melatonin from my GP which I take every now and then which is useful.
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Gnatty.... thanks so much for your lovely message. xx I am going to use some lavender oil on my pillow tonight and I also have a lavendar candle I will light. I love lavender and do find it soothing. I've been a muppet not to have done it before. I also have some night rescue remedy I will try and failing that some Kalm tablets which I think contain valerian. I do find the Calm and Headspace apps helpful and in normal times that would send me straight off to sleep. The consultant is referring me for some CBT as well. I'm not keen to take strong medication to be honest if I can avoid it so we agreed to hold fire on that for now. Thanks again for your kind message. This site is full of such lovely kind people like yourself x
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Pippa, did the consultant say how long to wait and expect things to get better? I mean, 'if things are still like this in X months, we'll have to revisit' etc etc?
I think I am going to hold off on any progesterone changes now, after this normal BP reading and feeling less throbby today. I'm sure the estrogen was out of my system 6 hrs after I took the patch off, but I think the systemic things it sets in motion don't stop or change so quickly maybe. I know it always took a week after an increase before i knew the full effects so maybe a week after taking the patch off will be a better measure...
The other thing I find really works Pippa, not sure if you want to try it, is exercise. There is something about raising the heart rate in a 'good' way which means that it kind of resets itself when it comes back down. I always feel very rested and still and calm about 30mins after exercise. I hope this state lasts(!). Don't do it too near to bedtime though, as you want time to relax before bed.
And also - electrolytes. Which are really important for hearts functioning properly. One thing that occurred to me, is that we distill our water - which strips everything out of it, all the toxins and pesticides but also all the electrolytes. We did try to put the minerals back in the water after distilling it, but we just hate the taste(!!) so we stopped doing that. So last night before bed I had a glass of water with some electrolytes in - and I just did after my workout too. Just in case there is some kind of electrolyte imbalance thing going on here - that can cause palpitations and heart arrhythmia. The only thing is they taste yuck...
Edited to add: Today has been an interesting day. After waking up with no palps and okay blood pressure, everything was lovely until about 2pm, then I had some off-and on periods of palps/throbbing and no palps/throbbing until about 7pm. Now everything okay again. When it is okay it is BLISSFUL. Just so peaceful and relaxed and my whole back (which feels like there is something on it) is stilled and calm. I could almost cry, just to feel normal. I am trying to be hopeful that the effect of the estrogen (?) is wearing off, but rather than stopping suddenly it is going to be more gradual. As it takes about a week for me to see the effect of a patch increase, maybe it will take up to a week to feel normal again. That will be Wednesday....
Pippa, I hope you have a good night. If you're anything like me you are coming to dread night times. I so used to like going to bed and getting nice sleep. I hope I can get back there again...
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joziel - he is reviewing me in a month's time but the way I've felt today it seems a lifetime away. Losing the will to live right now (not literally!). I would love to exercise but unfortunately I have fibromyalgia and due to feeling so rubbish for the past 4/5 months I've just not even been walking my dogs even. :( mu Husband has kindly taken over that task but I really miss it although its been way too hot the last week to walk them anyway. As soon as I am on the mend i will be back out there- can't wait. We have a filter on our water tap too as water here is beyond disgusting but I have drunk water straight from the tap today - I'll try anything :) Really pleased you have had some good episodes today - that sounds very promising. Maybe as you say no oestrogen is really starting to kick in. I so hope you get more and more of them. Yes I totally dread and hate the nights which of course just compounds everything. I have some Bach Rescue Night Remedy I will take tonight plus lavender on my pillow and a lavender candle! I have actually just put up a post asking ladies for their experiences and input as to whether my symptoms are from too high or too low oestrogen. I know they can be similar and I have read in several places that the latest batches of Oestrogel are quite a lot weaker as has been noticed by quite a few ladies who are on it. Knowledge is power as they say. I am getting all the symptoms I had last year when I first cut right down on dosage as I was running out of Oestrogel - it is just so difficult to know as both high and low seem to be quite similar. Anyway hope so much you continue to improve and that you have some good sleep tonight. It's so hot here and that doesn't helpxx
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Yes Pippa I totally agree. I am now psyching myself up for my evening blood pressure check ;D Question is, will it reflect the fact that I feel better?
Then there comes the challenge of going to bed and whether I'll be able to sleep.
As for the high or low thing... If you get really stuck, you could go cold turkey, stop all estrogen. Accept that it will be horrible but at least you will learn what that is like. Then start with 1 squirt, wait and see how that feels... and so on.
Assuming I get over this, I've no idea what I'm going to do when I actually need estrogen - I am just hoping that is 10 years away and HRT will be light years into the future by then, with tailor-made plans that imitate our natural fluctuations or something - or at least doctors who understand the problems I have with it ;D ;D ;D ;D ;D
I will firstly do about 3x blood tests to be sure I actually need it ;D because, unlike most people, I clearly can't just go by symptoms and start this when I might not need it, this experiment proves that ;D ;D ;D Then I will have to have a quarter of a 25 patch or something ridiculous for 12 weeks - to see if I can tolerate that. And all the time I might feel crap and will just have to accept that. And then increase another quarter. (This is if I do patches - the good thing about patches is I can be more precise. But perhaps patches don't suit me...). And at the first whiff of these symptoms happening, I will reduce back down - instead of listening to doctors who tell me to keep taking it and I'll get used to it. I will have to accept that I probably won't get higher than a 25 patch maybe, but if I can tolerate ANY estrogen, it's going to be good for my future health, even if it's not a lot. I tell myself I will still have progesterone and testosterone and that makes me feel better.
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When your post menopause joziel I’m sure you’ll be able to tolerate it a bit better.
Not too much, as I certainly can’t, but just enough to keep certain symptoms at bay, without creating anxiety and jitteriness.
As you say, you’ll be able to have progesterone and testosterone, the more dominant hormones anyway.
I think it’s a man thing about estrogen lol!
Nitey lovely ladies xx
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Nitey Marchlove.
Evening blood pressure 124/75. No 'irregular pulse' icon on.
Starting to feel cautiously optimistic here...
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I knew it was too good to be true.
I was throbbing and pulsing all night again. It starts a few mins after I lie down as I get sleepy.
Not sure how to measure bp for GP in this state as I can’t take it in bed. I can’t raise my arm to heart level. I could go take it in the kitchen right away….
I think they might need to fit me with a 24hr thingy…
I hope this all is going to wear off and stop…. But it is non stop all night. I manage to sleep but not the deep normal sleep I’d usually have.
I hope you had a better night Pippa. I was so hopeful I had this cracked and it was all going away after yesterday. Now I’m not so sure. If I get to Weds and no improvement I’m going to experiment with the progesterone.
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So so sorry to read your latest post. Honestly this nightmare just goes on and on doesn’t it. I’m really glad you’re being referred to see a specialist because I think at least they can rule out some of the things and whittle it down to what is actually causing this so you will get an answer. Sending love and empathy xx
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Yeah, the thing now is that I seem to have pretty normal blood pressure but I still have the palpitations. So my theory that the palpitations are caused by high blood pressure doesn't really hold anymore. I wouldn't have normal blood pressure with palpitations in that case.
And the idea of the progesterone causing high blood pressure doesn't really fit either, since it looks like I don't really have ongoing high blood pressure. (I do think it gets high at night when the palpitations are worse.) So I'm not even sure if I should try changing the progesterone now.... :o :o :o
The thing is, my left hand and left foot often feel tingly and a bit numb sometimes now - when I have the palpitations. I don't think blood is flowing properly when my heart is doing this. I can't really wait months for a referral to come through so when I get the letter (hopefully this week) if it's not soon, I will phone up and try to explain that this is a quite extreme thing. I'm not just having a little flutter now and then, it is like 15hrs of non-stop ectopic beats causing numbness in hand and feet and occasional high blood pressure...
How was last night for you Pippa, any improvement?
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joziel ..its good so very good that your BP is not high. I found this re ectopic beats ''Ectopic heartbeats are extra heartbeats that occur just before a regular beat. Ectopic beats are normal and usually not a cause for concern, though they can make people feel anxious. Ectopic beats are common. People may feel like their heart is skipping a beat or is producing an extra beat. Anxiety often causes ectopic beats, and they will usually go away by themselves''? If so my son discovered in his 20's that he gets these. He was seen by a cardiologist and checked out and in his case there was nothing to worry about - in fact he competes in triathlons now. That being said of course they should be checked out and you are absolutely right to pursue this. Its horrible for you that it is happening so often too. My BP shot up when I got the palps which is one of the things that concerned me. However as long as it doesn't stay high and is only a spike the consultant said nothing to worry about. You are dead right to chase your appointment - the sooner you get seen the sooner it can be investigated.
I increased my dose very slightly last night and this morning - took the Rescue remedy sprayed my pillow with lavender and whether it was coincidence or just sheer exhaustion I did get some sleep. Was woken a few times with hot flushes and anxiety but managed to get back to sleep so it was certainly a better night. Gilla rightfully pointed out that maybe just change the dose to the morning only which I always used to do originally so I will start decreasing the night dose and add it on to the morning one slowly over the next weeks. It makes sense totally. I do feel less anxious today so far but doubt it is the extra oestrogen kicking in so fast plus it was only a small amount more likely the fact that I got a bit of sleep. Fingers crossed you get your letter soon. Is it worth phoning the specialist's secretary direct maybe? xxx
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Yes, I will phone directly when I know what specialist I've been referred to ;D Got to wait for the referral letter. I worry that, with all the Covid heart-related issues, there might be some wait... unless I go private, which I will do if I have to. But would rather not have to - since all this health stuff this year has cost a phenomenal amount of money...
Yes, I know ectopic beats are usually fine - but when they're not just one or two, or for a few minutes, but go on for hours and hours and hours.... it gets exhausting. It is quite a subtle feeling which it has taken me a while to identify and realise is happening. Often, when I thought I was just 'anxious', I had these ectopic beats. Before HRT, I had the classic skipped beat thing - and I knew that was due to hormones, it only happened in the evenings before bed and I didn't worry about it. It was very different to this light fluttering feeling which goes on forever which I have now. It feels like there is a small bird in your chest. :o It is easy to ignore for a short period but when it goes on all night for months, it gets absolutely exhausting...
I'm really glad to hear you had a better night. I agree that hot flushes are unlikely to be caused by high estrogen and are a pretty definite low estrogen symptom and that you should try to get back to exactly what you did for 20 years which worked so well!
I know everyone talks about keeping estrogen levels constant but I sometimes do wonder if our bodies actually don't like the stable and constant dose of estrogen. Because that's very unnatural and not something they would have previously been used to. What if there is some naturally fluctuating cycle we should be trying to emulate, across a month. There is a combined pill which tries to do this (Qlaira) - it starts with high estrogen and low progesterone, then it gradually decreases the estrogen and increases the progesterone - before the bleed. So sometimes I wonder if our bodies find the static and constant nature of HRT difficult. But then that doesn't fit with keeping changes gradual and everything we thought we knew.... :o ???
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Joziel…. quite honestly at this rate I think we need to be taking university degrees in trying to sort ourselves out it’s just so incredibly complex isn’t it 🤦♀️ totally take your point in the frequency that you are getting the ectopic beats and of course it needs to be investigated asap. Like you I’ve shelled out on private meno clinic plus the cardiologist and it is very very expensive :( I don’t regret it as they have both been really brilliant but I have to say soon as I have levelled out i will stop so I hope it happens soon 😩Xx
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Hi All
There are a few things that can cause hot flushes besides menopause.
Hyperthyroidism is one such thing along with palpitations apparently.
https://www.medicalnewstoday.com/articles/hot-flash-causes
Interestingly I’m hypothyroid and on Levothyroxine and since I’ve increased my dose to 60mcg from 30mcg I’ve started getting hot flushes. My specialist says I’m either overdosing or my estrogen is too low.
So she’s got me to take my temperature for 10 days upon waking before I get out of bed to see if it’s a levothyroxine issue.
Hope it is as I don’t want to increase my low dose of estrogen if I can help it.
X
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V good reminder Marchlove. I'm guessing Pippa's had her thyroid well tested in all this... But maybe the extra thyroid tests that Medichecks run for thyroid antibodies could be a good idea Pippa? That's what ATB suggested in her thyroid posts...
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V good reminder Marchlove. I'm guessing Pippa's had her thyroid well tested in all this... But maybe the extra thyroid tests that Medichecks run for thyroid antibodies could be a good idea Pippa? That's what ATB suggested in her thyroid posts...
Definitely joziel. Funny enough I have ordered a Medicheck to take in a couple of weeks time for oestrogen levels x
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@ Liliith … how are you doing? Hope so much you are improving . Sending love xx
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Hallelujah ;D >
I had a night of amazing sleep with no blimming palps!!!!!! ;D
Let’s hope they’ve gone for good. It’s 5 days since I took the patch off for future reference. I think my blood pressure returned to normal pretty fast (hence all my normal readings) but the palps took longer to stop…..
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That's great news!!! And in this heat 😊
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I know. And blood pressure 102/65 this morning. This is my real normal.
I’m still crapping myself about having to take estrogen again in future. But I guess I will recognize all this so much quicker and not go through 6 months of this….
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Joziel …. that’s fabulous news I’m so so pleased for you 👍👏👏👏👏
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I've been fine all day today too. :) :) :) IT IS SO NICE JUST TO FEEL NORMAL!!!!!!!
I'm not quite done fiddling around with all this, as I'm still off testosterone - which I stopped to simplify things during this mess. I will restart again in a couple weeks if everything continues okay.
And I'm also not sure if I want to keep taking 200mg every day, or to try switching to a sequential regime and stop for 2 weeks to allow a bleed. (Using my own natural estrogen here, instead of HRT LOL!) This would be Lara Briden's 'cyclic progesterone therapy' idea. I'm a bit nervous about that in terms of endo, but I think I'd know if it is going to work and could go back to every day if I needed to...but it might enable me to produce more estrogen. Meanwhile I've been implementing all her recommended endo preventatives like berberine, NAC, zinc etc... and would be using the progesterone for half the month.
Also want to test my estrogen levels now I'm off exogenous estrogen - and testosterone levels now my ovaries are functioning better - and ferritin again...
Definitely feeling like a biohacker here but also feel like I'm making more progress thinking for myself than listening to most doctors.
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Alas, the flutters are back :(
I think maybe this is going to be a gradual fade-out thing. They are happening less often and for shorter periods. Sigh....
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Joziel…. it’s really good that your episodes are getting gradually less and less. Definitely going in the right direction xx
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Weeeelll not so sure now. I’ve just had them all through the night. We’re at 12+ hours of constant palps now.
I just don’t know how to get my heart out of this again. Yesterday I did a workout and it stopped at some point during that. Then it was great for a few hours. And then it happened again and has gone on through the night.
I can’t keep doing workouts 😂
If you put a hand on my chest it feels like a little bird is trapped in there. My pulse is like double time even with me lying down and dozing. My left hand and foot go tingly and a bit numb.
I think I will try to call the clinic I’ve been referred to and hopefully they’ve got the referral by now and I’ll explain how severe my symptoms are. I’m not sure what else to do. A&E just send me away because I’m not having a heart attack. My doctors have all spent ages telling me this is somehow fine and I should ignore it and continue taking HRT - which under the idea of “do no harm” they should probably all be sued for 😂😂 - but I’ve finally found one who referred me to this clinic….. but when is that going to happen….
Then there is a big psychological aspect to it because when it stops I get scared it will happen again - when will it next start, how long will it last…. And that fear makes my heart skip a beat and go into this mess again. I’m living alone at the moment for another week as my husband is away so if I collapse no one is going to know 🤷♀️
If I had some beta blockers, I’d know that if it starts I can take one and be okay again quickly. Then I wouldn’t be so afraid of it happening. And then it would happen less.
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That was going to be my suggestion before I got to your last paragraph. Beta blockers would give you a chance to reset both physically and mentally.
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Yes, I've taken them before a long time ago (for performance anxiety as a musician, but that's a whole other story!) so I know how they work and that I'm okay with them.
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joziel … I take 25 mgs of (beta blocker Atenelol ) daily. The consultant recommended possibly changing to Propanalol later on. Personally for me I don’t want to take antidepressants for the anxiety. I’d rather do the CBT course
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A quick question re: the absorption of oestrogen ladies.
Earlier in the year, I took femeston conti 1mg for 3 months. Oestrogen levels at the end of the 3 months were 303.
Then I re started the 75 patch and at the end of the 3 months, oestrogen was 313.
Does that mean I was absorbing all the femeston? (well I wasn't because my bladder went awol)
Or, that I am only absorbing 1/3 of the 75 patch?
I can't work out what I need. I have a few days of feeling fine and then bang, feel like I've been dug up again (irritable, tired, heart palps etc)
Just don't know what the best way forward is.
I hate the gel and do not absorb that well.
Been on this patch for best part of 2 years (apart from the femeston trial).
???
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I don't think you can work anything out from those numbers Nas. The way different individual bodies absorb different preparations of estrogen (oral vs patch) seems to differ a lot. They can give us broad equivalents, but that's all...
If you still feel rubbish and your bloods are only 313, then it's likely you need more estrogen. Have you tried a 100 patch?
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Pippa, it was propranolol I took for performance anxiety. Is there a reason for one over the other?
I am feeling good again now. Tomorrow will be one week since I took the patch off. So since I've previously taken a week to notice the effects of patches, I'm hopeful that things will get a lot better after tomorrow.
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Yep you are probably right joziel,
Seems I get a couple of good days and a few more rubbish ones thrown in.
I haven't tried the 100 patch since last September. It didn't suit me then, but maybe it will now, I don't know.
Might as well consider it I guess.
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Nas, you could split the difference halfway between 75 and 100. Umm... 87.5??
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Could do joziel,
I had thought of adding half a sandrena sachet to the patch to make 100, but don’t want to meddle too much right now
( particularly as the coil is still settling in).
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Hey I’ve found a new thing that helps me get rid of the palpitations and thought it might help others.
It’s an app which uses “tapping” or EFT therapy to reprogram the nervous system. The app is called The Tapping Solution and you can sign up for a free 11 day trial and cancel before your card is charged.
It sounds completely ridiculous at first but I’ve now got rid of palpitations three times by doing one of their anxiety sessions. You tap your fingers lightly in these specific places on your body which are acupressure points. The app guides you thru where to tap.
I’m not sure exactly how it’s working or if the words of the narrator are useful at all or whether just physically tapping yourself isn’t the thing that’s working really.
Anyway thought it might be useful if people are anxious. I’m so relaxed afterwards.
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Hey!!!
I've just started a separate thread to try to collate together our experiences with estrogen.
Please please go answer my questions in that thread :)
I really want to go to some doctors and get some answers for why some of us experience all this on estrogen. At the moment no one seems to have a blimming clue...
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Hey I’ve found a new thing that helps me get rid of the palpitations and thought it might help others.
It’s an app which uses “tapping” or EFT therapy to reprogram the nervous system. The app is called The Tapping Solution and you can sign up for a free 11 day trial and cancel before your card is charged.
It sounds completely ridiculous at first but I’ve now got rid of palpitations three times by doing one of their anxiety sessions. You tap your fingers lightly in these specific places on your body which are acupressure points. The app guides you thru where to tap.
I’m not sure exactly how it’s working or if the words of the narrator are useful at all or whether just physically tapping yourself isn’t the thing that’s working really.
Anyway thought it might be useful if people are anxious. I’m so relaxed afterwards.
Lol, in my desperate search to get rid of my anxiety, I too have been tapping using a utube video. It definitely worked but I’m presuming because when doing the tapping, you’re so involved, it allows the anxiety to subside. I also downloaded the app but saw it was a free trial so didn’t go any further. Is the app any good joziel?
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Yes, the app is good. Like you, I thought it was just because you were concentrating on something - but I don't think that's the whole story, because I've also done breathwork apps where you are concentrating on breathing in and out, I've done mindfulness and meditation, etc etc - and none of that seems to work as well as tapping has done for me in the last 48hrs.
I feel really relaxed and like my whole body has been given a big hug or something, I think it does something beyond just making you concentrate.
With the app, download it and sign up for the free 11 day trial. Then just go to your name on your phone and Subscriptions and cancel the free trial. You will still get 11 days free access and won't be charged after that. (Unless you sign up again.)
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Really loving the sound of this! x
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Yes, the app is good. Like you, I thought it was just because you were concentrating on something - but I don't think that's the whole story, because I've also done breathwork apps where you are concentrating on breathing in and out, I've done mindfulness and meditation, etc etc - and none of that seems to work as well as tapping has done for me in the last 48hrs.
I feel really relaxed and like my whole body has been given a big hug or something, I think it does something beyond just making you concentrate.
With the app, download it and sign up for the free 11 day trial. Then just go to your name on your phone and Subscriptions and cancel the free trial. You will still get 11 days free access and won't be charged after that. (Unless you sign up again.)
Thank you SO SO much for recommending this. My anxiety has been utterly debilitating this past week. I am doing a trial with the app and it has helped more than I could possibly have hoped. I will subscribe- even though money is tight. It’s a blooming miracle. I love that I have a toll to use when I start to get jittery.😍
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I’ve done this is the past with a practitioner, along with shaking therapy (great for anger!)
It is very good. Why don’t you share the App on a new thread so that more folk can see it.
Not done it in awhile as had forgotten all about it, but when I was at my worst it helped enormously xx
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Ah, glad it's helpful for someone! It's the only thing that has been able to stop my palps a few times, besides a workout session ;D
I don't even know if the words are important, I've done it whilst reading the Guardian online and ignoring the words(!) and as long as I tap the places they say to tap, it still seems to work ;D
I think there might be free YouTube tapping sessions, I'm going to look into those. Maybe I'll get good enough at doing it that I'll be able to do it myself, unguided.
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Here's a YouTube video showing a session: https://www.youtube.com/watch?v=02bN4JFx10Y
And here's a free documentary about it, including research: https://www.youtube.com/watch?v=9UypGSQtzFw
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Great if you put it on a new thread explaining what you know about it.
I’ll join in with my experience x
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Sorry been a bit absent for a few days. Unfortunately my anxiety at night is getting progressively worse to the extent that I can hardly sleep now. Trying to hang on till Wednesday when I get the results of my blood test for oestrogen levels. I’m having the joy of collecting urine in a container for the next 24 hours today so won’t be going far from the loo :) I have signed up for the Tapping Solution I love the idea that it’s drug free and I’m a great believer in natural healing methods. Thanks so much for sharing x
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Pippa, I just posted on the other thread. I'm really sorry to hear things are not getting better and are actually getting worse. :-\ When we didn't hear from you and you were so positive about things when you last updated, I thought you were on the way out of the nightmare :'(
Please let us know what your estrogen levels are - what is the urine testing for?
In terms of blood estrogen levels and these symptoms, I started to get them on the 50mcg patch when my blood levels were 233pmol and then the next time I tested I was on a 37.5 patch and blood levels were 453pmol. So I've never had sky-high levels of estrogen which could explain these stupid symptoms. :-\ I don't know if there is any correlation between amount and symptoms :-\
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joziel and all the other lovely ladies on this thread - thanks so much for your lovely message. The weekend was awful so I knew I had to do something - felt like I was on high dose Red Bull or something! I did not take my evening Oestrogel last night and actually got some sleep. I only used it this morning and I won't again tonight and have dropped the dose - it got to the stage I really could not cope with it anymore. Today has been a bit better. I did the 24 hr urine collection over yesterday and last night and we took it back to the hospital today. Will get those results and the other blood results at follow up on 5th Sept with the Cardiologist. In a way it was a good day to do the collection as my anxiety etc was through the roof yesterday so if they are measuring adrenaline type levels I would imagine it will more than likely be raised. Get my oestrogen levels result this Wed with follow up telephone consult with Meno consultant so there is an awful lot I need to ask her as this is getting beyond ridiculous. I think that the Oestrogel now is stronger than the one I was on for over 20 years (they changed it from estradiol 17b to estradiol hemihydrate a while back). It is most definitely much stronger than Lenzetto was so probably the dose of Oestrogel that I was on all those years is now too strong hence my symptoms. Anyway time will tell but am hoping to have a better week ahead than the last one was. I have started the tapping and am really loving it. I find it definitely helps with anxiety and I've only done two sessions on that. Intend to use it for sleep tonight. Thanks so much for posting about it joziel ....would never have thought of that. It might sound crazy but I have also got yesterday a weighted blanket which is also supposed to help with anxiety and stress and used it last night. It felt very strange to start with but I got to really quite like it. ALmost feels like you are being hugged :) Hope so much you are all doing better?
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Gosh Pippa, I really hope you have some insight soon into what is going on. Are you taking any supplements which could cause anything like this? That sounds like a stupid question except Marchlove has just spotted that I am taking berberine (to treat endo) and apparently in hypervagotonic people (people whose vagus nerves relax quickly and have resting pulses under 60bpm usually) berberine can cause arrhythmias because it tries to send the pulse even lower and the heart tries to fight that. :o :o
SO I'm now off the berberine to see if that helps....because I definitely have a resting pulse under 60bpm and that's when I'm awake. When I'm asleep it's going to be even lower (which is when the palps happen). After my endo surgery, they were concerned by my low pulse and kept me closely monitored. (It was only 35-40bpm.) So this would all make sense. Blimming heck. We should know within days. I didn't take berberine today, so this is day 1 off it...
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Gosh Pippa, I really hope you have some insight soon into what is going on. Are you taking any supplements which could cause anything like this? That sounds like a stupid question except Marchlove has just spotted that I am taking berberine (to treat endo) and apparently in hypervagotonic people (people whose vagus nerves relax quickly and have resting pulses under 60bpm usually) berberine can cause arrhythmias because it tries to send the pulse even lower and the heart tries to fight that. :o :o
SO I'm now off the berberine to see if that helps....because I definitely have a resting pulse under 60bpm and that's when I'm awake. When I'm asleep it's going to be even lower (which is when the palps happen). After my endo surgery, they were concerned by my low pulse and kept me closely monitored. (It was only 35-40bpm.) So this would all make sense. Blimming heck. We should know within days. I didn't take berberine today, so this is day 1 off it...
Oh wow good luck I really hope that helps. This site has so many knowledgeable ladies on it - we get more help on here than in the Drs!!! Fingers crossed for you dropping the berberine!! No I'm not not taking any supplements - only probiotics xx
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Hi Pippa
I’ve only just seen your long post. Bless you, what a journey you’re on.
Wiil have a longer read of it tomorrow.
Hopefully you sleep better tonight xx
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Supplements have quite a profound effect on us.
Good and bad.
I always look at them with an open mind and research if an usual symptom arises. X
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Ok, well here's an update... I got a call from the specialist arrhythmia nurse, who was lovely. At first I was a bit down, because she said that 15th Sept really was the first appointment they had and they couldn't offer anything earlier.
But then she basically gave me a consult on the phone(!!). She asked about all my symptoms and listened well, and said they either set people up with a holter for an ECG which I could pick up or they give them a Kardia device. So I said I'd just ordered a 6 lead Kardia and was waiting for it to arrive, so she said that was great and she gave me her email address so I could email her my ECGs...!
Then she said I'd also need an echo-cardiogram just to check there was nothing wrong with the structure of the heart and she would refer me for that now - but that there was a long waiting list for those and I might not get it until the new year. (So I might have to pay for that privately. But I'm going to see what she says about the ECGs to start with... )
I told her about my slow resting pulse and the berberine as an idea(!) and she said she'd never heard of that but she was happy to learn about new things ;D So I might send her the paper when I send her some ECGs ;D
Anyway, I feel like I've basically had a consult and got things started now ;D
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All in all that sounds like a good result.
Action is being taken which is reassuring.
X
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Joziel .. so pleased to read your post that you have some progress re your consult with the Nurse. Xx
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Pippa- do keep telling us how you’re doing on this thread.
We know some of your story here already, so moan away to us when you feel like it! X
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Pippa- do keep telling us how you’re doing on this thread.
We know some of your story here already, so moan away to us when you feel like it! X
Marchlove ...Bless you that is so kind and thoughtful. Have the consult with the Meno Consultant tomorrow plus blood test result so promise to report back . Hope all you ladies have a good or at least a better night xxx
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Very interested to hear your blood results Pippa. Do let us know.
I am clinging to hope that this is all caused by berberine, although I feel a little silly about the smidgeon of a chance that is the cause. But I just need some hope...
It is day 2 off berberine today. I've had 2 days off it every week, because Lara Briden says only to take it for 5 days out of 7, so I'm not yet in unchartered berberine territory... looking forwards to seeing what happens in the next couple of days.
I will feel like a total plonker if this is berberine on one level though ;D ;D ;D
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I do hope it is too Joziel!
Don’t feel like a plonker, I’ve done it many times with supplements in the past and it’s taken me ages to figure out what’s causing a certain thing.
For instance some people can’t get on with certain types of B12, I’m one of them, and that took forever for me to realise. X
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This minefield really is all trial and error joziel and good for you in being proactive in trying different things. Such knowledgeable lovely ladies on here too it is such a wonderful support network. Here is hoping so much cutting out the supplement works for you x
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Thanks Pippa and ML x
Pippa What was your estrogen blood test result?
I slept well and deeply last night, which might mean I had less palps than usual - although I still woke up with them and am sitting here with them now. I did an ECG with my Apple Watch whilst lying in bed, which said it did not detect atrial fibrillation. I guess that is reassuring although there are 650000 other things it could be ;D ;D I think the Apple Watch is not as good as the 6 lead Kardia thingy I am eagerly awaiting in the post. Then I can start to do ECGs to email to this nurse.
My hairdresser yesterday told me I should be wearing the Apple Watch all the time to try to get more data (I usually only wear it when I go out the house). (Hairdressers, always stepping up to the mark for any of life's difficulties, right? ;D ;D ) So I've been wearing it and so far it has confirmed my very low average resting pulse of 44bpm. So I am definitely brachycardic, if I've got the right word there.
Pippa, what was the diagnosis in terms of the heart checks you had? Was it just "ectopic beats"? The cardiac nurse yesterday said that my ECG just showed ectopic beats, but I don't think I was actually having an episode when that was taken. But anyway, she said that if it IS just ectopic beats causing this, then they don't need to treat at all - they are considered normal. Even if they are constant. :o She said they will treat if they are causing problems like anxiety, lack of sleep, feeling weird etc - usually with beta blockers - but those treatments are just to help you feel okay, not because the condition needs to be treated, health-wise. And that I might not be able to take beta blockers anyway, with my very slow resting pulse - they will cause it to go even lower, which could be dangerous. But there are other meds, she said.
But I don't think I'm going to want to treat just for symptoms if there is no underlying health reason to treat. Like you Pippa, I'm pretty against taking meds unless I really have to and I try all natural approaches first. Anyways, I won't get ahead of things... must do ECGs with the Kardia first, when it arrives!
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Joziel… just a very quick reply and I will post links later but just to let you know I have a Kardia six lead machine and it was invaluable because I could simply just send the ECG straight to the consultant which made his diagnosis so much quicker at the consultation xxx
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Hi lovely ladies -UPDATE!! oh my goodness. I have just had my telephone consultation with the Meno consult. My blood results were off the scale LOW at 69!!! They have never ever been that low. She said no wonder I had been feeling so awful. She also said this will be because of the many changes of HRT I have had over the past 4 months. I have only changed back onto Oestrogel for just over 3 weeks and she said that is why my levels are so low still as they take time to build up plus I will need to up the dosage. So I have to build up the dose really really slowly over the next 3 months and she wants me up to 3 pumps daily. She also told me on no account to split the gel dosage twice daily (funnily enough I had already 3 days ago gone back to doing the whole dose in the mornings and not dividing it... maybe that is one of the reasons I am feeling a bit better too). She said it is designed to be used in one go so you get the whole dose straight away and it will last 24 hours but important to apply it at the same time every day. So a very productive consultation. She also has prescribed me Vagifem and to continue using the YES OB applicators. Feeling a lot more positive now there is a proper plan in place and hopefully will start to feel human again. It does explain too why I am feeling so whacked out all the time. She knows the Cardiac consultant I saw and said he is great and she is going to write to him with an update of today's consult. She said the symptoms I have been getting will be down to the very low oestrogen levels. So weird as I have been feeling a lot better today and slept all night last night on the lower dose but maybe it is because it is being applied in one go. Very interesting that as I would have imagined that splitting the dose would even it out. Ho hum you live and learn....onwards and upwards! xxx
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I think this is all so individual, it's crazy. Like some people might do well with the dose split.
Interesting your levels are so low though Pippa. This is all such a nightmare. I am still palping away, day 3 off berberine....
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I think this is all so individual, it's crazy. Like some people might do well with the dose split.
Interesting your levels are so low though Pippa. This is all such a nightmare. I am still palping away, day 3 off berberine....
So sorry to hear this joziel :( . Hopefully when your Kardia mobile machine arrives and you can get some tracings and who ever you are being referred to can view them then you can get an answer. So frustrating trying to work out what is going on :(
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Yes, I know. I don't know what I'm more worried about - that this is all normal ectopic beats and so they are not really going to be interested or help me much (or I'm not going to want to try the meds to help and I'll be stuck like this!) or that it's something serious that I'll need meds for. :'(
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Yes, I know. I don't know what I'm more worried about - that this is all normal ectopic beats and so they are not really going to be interested or help me much (or I'm not going to want to try the meds to help and I'll be stuck like this!) or that it's something serious that I'll need meds for. :'(
Joziel…you are young and obviously very fit as you work out which I doubt if it was anything serious you would be able to do? It may well be more than likely still due to the change of hormones etc fingers tightly crossed that you get your appointment very soon so they can then investigate and put your mind at rest or treat anything that may need it xxx
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Pippa, yes, I think it is either the berberine (still not dismissed that yet - now day 4 - no palps right now, but had them bad all night last night). Or it's all the hormonal changes, going from low estrogen, to very high estrogen, back to lowish-but-ok estrogen made by my own ovaries again.
I don't know if I'm very fit as I don't push myself to continue when things get really uncomfortable ;D but I do work out 4x weekly and working out actually helps the palps - I can get rid of them, if I do a workout. It's like it makes my heart stop pissing around with all these wasted extra beats and actually do what it's made for and be useful ;D ;D ;D ;D
However, workouts at midnight are not very practical ;D
It's not really an appointment I'm waiting on now, it's getting this Kardia thing in the post (supposed to be delivered today but I'll believe it when I see it) so I can do some ECGs when I'm at my worst and email them to the cardio nurse.
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Pippa….with your Kardia device, what result did it give you for ECGs?
I just got mine in the post today and it says Normal Sinus rhythm. I paid £9.99 to be able to detect more arrhythmias for a month and still it says Normal Sinus rhythm. I’m pretty sure I’m having palps now….
Did you also get only that result? I guess I will still send it to the nurse as they may see more than Kardia does!
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Joziel… that’s really great news that it says normal sinus rhythm which is exactly the result I got when I wasn’t having one of my tachycardia episodes. When my heart went too fast it’s simply said tachycardia but no sign of a atrial fibrillation or other abnormalities. Basically when I get an episode it is simply my heart going extremely fast but no other abnormalities. The cardiologist consultant looked at my tracing as you know and said it’s completely normal just a fast heart rate at the time of taking the ECG. When not having an episode my heart rate etc is also totally normal . The fact it states you have normal sinus rhythm even when you are having ectopics sounds incredibly positive to me but your cardiac nurse will be able to tell you far more obviously . Did you do a six lead ECG as well as the normal one? X
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Yes, I'm only doing the 6 lead ECGs on it. I thought that would give much more info.
The only notable thing is that my heart rate is much faster than usual when the palps are happening. I mean, my resting (awake) heart rate is 45bpm on average. When I had woken up 1 minute ago due to palps this morning, and sat up to take an ECG immediately, my heart rate was 76bpm. Which for me, lying in bed, is almost double what I'd expect. It was also beating harder than usual. (My heart beating fast might be in the normal range, given how slow my resting pulse usually is ;D )
Do you get ectopic beats at these times, according to your cardiologist?
The thing is, if I use my blood pressure machine, it will give me the 'irregular pulse' icon when taking my blood pressure. So there is something being detected there... even if my ECG machine then says 'Normal Sinus Rhythm' :o What's going on there then?! The ECG machine knows they are normal ectopic beats but the blood pressure machine isn't sophisticated enough to detect that?
I have yet to run the blood pressure machine and then immediately after the ECG (or vv) in the same palp episode, which I intend to do...
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Yes, I'm only doing the 6 lead ECGs on it. I thought that would give much more info.
The only notable thing is that my heart rate is much faster than usual when the palps are happening. I mean, my resting (awake) heart rate is 45bpm on average. When I had woken up 1 minute ago due to palps this morning, and sat up to take an ECG immediately, my heart rate was 76bpm. Which for me, lying in bed, is almost double what I'd expect. It was also beating harder than usual. (My heart beating fast might be in the normal range, given how slow my resting pulse usually is ;D )
Do you get ectopic beats at these times, according to your cardiologist?
The thing is, if I use my blood pressure machine, it will give me the 'irregular pulse' icon when taking my blood pressure. So there is something being detected there... even if my ECG machine then says 'Normal Sinus Rhythm' :o What's going on there then?! The ECG machine knows they are normal ectopic beats but the blood pressure machine isn't sophisticated enough to detect that?
I have yet to run the blood pressure machine and then immediately after the ECG (or vv) in the same palp episode, which I intend to do...
joziel.....I never had ectopic beats just the very fast heart rate in episodes of up to 155bpm. Thankfully at the moment they have gone and am for the last 2 days beginning to feel relatively normal compared to what the last few months have been like. The Kadia machine is very reliable and the consultant said he rates them highly - it also means if a patient is worried they can take a trace and send it straight off instead of having to wait to see a Doctor etc. It will be good to hear what the Cardio Nurse thinks when she sees your tracings so you can get an idea of what needs to be done next. Have you recorded any ectopics on the Kardia yet? How are you feeling today? x
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Yes, I have some super palp episodes recorded ;D ;D ;D Most of them at 5.30am or 6am... Kardia says they are 'normal sinus rhythm'. :o But my usually very slow pulse (45bpm!) is going at 81bpm at these times, even though I'm lying down in bed (well, I've just sat up to take the ECG).
I also have recorded an episode where my hands and feet were starting to throb faintly - which is what happens before the palps start. And I've got a normal 'no symptoms' recording, if that's any use for comparison.
I'm going to email the ECGs off to the nurse specialist at the start of this coming week.
Unfortunately stopping the berberine doesn't seem to have helped, as I'm now at day 7 off it. But I'm not going to re-start it whilst all this is going on, if it can have cardiac effects.
I'm so glad you're feeling better - long may it continue!!
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joziel - that's fab you have got the episodes recorded they will now be able to pin point things and address anything that needs addressing. It will be great for you to send the tracings off and see what the Cardio Nurse recommends for the next step if indeed any steps are needed. Hope so much you have a good day today x
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ECGs just went off to the cardio nurse, so let's see.
I sent her 2x 'worst episodes', 2x 'episodes just starting/pulsing and throbbing' and 1x 'control/no symptoms'. ;D ;D ;D
Plus my 7 day BP readings (perfect) and a thesis by way of an explanation, which will probably take her about a year to read ;D ;D ;D ;D ;D (Or she just won't read it and will only look at the ECGs!)
Kardia is insistent they are 'normal sinus rhythm' even when I'm quivering all over the place with palps, so let's hope they are innocent/okay palps....
Meanwhile I think things might be getting better, as I seem to be sleeping deeper for parts of the night now. I am hoping this means it's not happening ALL night anymore. It is not happening at all during the day now and my BP is totally normal always (even during palps).
Approaching 3 weeks off estrogen now and 8 days off berberine.
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I'm going to leave the forum after this post, but I did want to post some kind of a 'resolution' to all this - in case anyone is reading the thread in the future.
I had a reply back from the cardiac nurse. She said:
"All of these ECGs are normal. You can still feeling your heart beating more forcefully, yet all is well (I get this). Be reassured this all looks great. If the BP is not well controlled, you can indeed have more rhythm fluctuations. But all that looks good too now you are off estrogen. We can go ahead with an echocardiogram no problem – about 8 months to wait at the moment unfortunately. Interestingly, the hormone / palpitation link is something we are really interested in the moment, with specialists a little perplexed by the association even. Do feel free to send any further tracings through if you need to."
So that's great and I am very reassured there is nothing wrong with my heart. I will have the echocardiogram, even though there is a wait. I am hopeful they are going to do further research into all this and have more answers for women in the future as to why estrogen causes this for some of us. Now I am off estrogen, my symptoms continue to improve and I just get occasional symptoms (palps) at night or when I wake. My BP returned to normal immediately on stopping HRT. The high blood pressure episodes at night, caused by HRT, might be responsible for causing all these palps. That's my best guess.
For the record and before I sign out permanently: I am currently on 200mg of utrogestan orally, and continuously. This is working to suppress my endo just as well as any synthetic POP has ever done - and I highly recommend trying this to anyone else who has endo, and would like to be on HRT without aggravating endo. Or even to anyone not on HRT, but who wants a natural alternative to the synthetic progestins in POPs for controlling their endo. If doctors won't prescribe utrogestan alone, you can accept the script for both estrogen and utrogestan - and just take the utrogestan. If you get breakthrough bleeding, just schedule a bleed by stopping for 5 days every 3 months.
The desogestrel POP suppressed my estrogen/ovaries so I had low estrogen symptoms and caused this mess in the first place for me. I really don't recommend desogestrel to any women, especially peri women.
I'm going to leave the forum now. I feel like my own crisis has resolved and I'm really thankful to those who've helped. I hope I've been a little helpful to others, in the time I've been here. Pippa, I hope that you too are on the right path now...
Unfortunately there seems to be a bit of a witch hunt and personality war going on, on the intermittent fasting thread, and also carried through into other threads now - where everything I say is being picked apart for the sake of it by multiple people. I'm not interested in putting myself through being attacked constantly, or in personality wars. I've had a really tough year (as evidenced here!). I say things the way I see them. I might be blunt but I don't mean to cause offence. I guess the written word sometimes doesn't convey tone of voice and can be misconstrued. One of the people who was very helpful to me (ATB) has already left, for similar reasons, so perhaps it is just how this forum rolls.
Good luck to you all in your own journeys. Don't stop researching and looking for answers. Remember that science is in its infancy when it comes to women's hormones and you may have to experiment with some fringe ideas. And do check out Lara Briden's excellent book 'Hormone Repair Manual' for more info on the benefits of body identical progesterone.
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I'm sorry to see you go Joziel. However I don't think there is a witch hunt going on here. Whilst you and ATB both gave your time and advice which was greatly appreciated, a couple of things strike me:
I think sometimes you were both a little blunt as you said yourself. There is no need to be! We can always read our posts first and edit them if we feel we might cause offence. The other point I would like to make is that I felt both of you sometimes didn't really like it if others had a different point of view to your own. For example the post on wildly fluctuating hormone readings. Your opinion was that they must be errors whereas another member said that it is indeed possible to have very high readings. Equally the fasting thread. Let's all just try and be a bit more gentle with each other!
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Joziel it is such a shame that you have left MM. Your posts were informative and useful.
Thank you for the things you've said/posted.
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I'm going to leave the forum after this post, but I did want to post some kind of a 'resolution' to all this - in case anyone is reading the thread in the future.
I had a reply back from the cardiac nurse. She said:
"All of these ECGs are normal. You can still feeling your heart beating more forcefully, yet all is well (I get this). Be reassured this all looks great. If the BP is not well controlled, you can indeed have more rhythm fluctuations. But all that looks good too now you are off estrogen. We can go ahead with an echocardiogram no problem – about 8 months to wait at the moment unfortunately. Interestingly, the hormone / palpitation link is something we are really interested in the moment, with specialists a little perplexed by the association even. Do feel free to send any further tracings through if you need to."
So that's great and I am very reassured there is nothing wrong with my heart. I will have the echocardiogram, even though there is a wait. I am hopeful they are going to do further research into all this and have more answers for women in the future as to why estrogen causes this for some of us. Now I am off estrogen, my symptoms continue to improve and I just get occasional symptoms (palps) at night or when I wake. My BP returned to normal immediately on stopping HRT. The high blood pressure episodes at night, caused by HRT, might be responsible for causing all these palps. That's my best guess.
For the record and before I sign out permanently: I am currently on 200mg of utrogestan orally, and continuously. This is working to suppress my endo just as well as any synthetic POP has ever done - and I highly recommend trying this to anyone else who has endo, and would like to be on HRT without aggravating endo. Or even to anyone not on HRT, but who wants a natural alternative to the synthetic progestins in POPs for controlling their endo. If doctors won't prescribe utrogestan alone, you can accept the script for both estrogen and utrogestan - and just take the utrogestan. If you get breakthrough bleeding, just schedule a bleed by stopping for 5 days every 3 months.
The desogestrel POP suppressed my estrogen/ovaries so I had low estrogen symptoms and caused this mess in the first place for me. I really don't recommend desogestrel to any women, especially peri women.
I'm going to leave the forum now. I feel like my own crisis has resolved and I'm really thankful to those who've helped. I hope I've been a little helpful to others, in the time I've been here. Pippa, I hope that you too are on the right path now...
Unfortunately there seems to be a bit of a witch hunt and personality war going on, on the intermittent fasting thread, and also carried through into other threads now - where everything I say is being picked apart for the sake of it by multiple people. I'm not interested in putting myself through being attacked constantly, or in personality wars. I've had a really tough year (as evidenced here!). I say things the way I see them. I might be blunt but I don't mean to cause offence. I guess the written word sometimes doesn't convey tone of voice and can be misconstrued. One of the people who was very helpful to me (ATB) has already left, for similar reasons, so perhaps it is just how this forum rolls.
Good luck to you all in your own journeys. Don't stop researching and looking for answers. Remember that science is in its infancy when it comes to women's hormones and you may have to experiment with some fringe ideas. And do check out Lara Briden's excellent book 'Hormone Repair Manual' for more info on the benefits of body identical progesterone.
Oh Joziel, I’m gutted to see you go. You have been such a great help to me and I was so grateful that you put me onto Laura Briden. Her book has been invaluable and i’d not have read it if it weren’t for you. Your knowledge of progesterone has helped me so much. Thank you and I wish you all the best.
On a side note - Why oh why do we have to infight and fall out? We are all in this together and it’s such a shame when people feel the need to leave, especially when they’re so helpful to others struggling. If you don’t agree with what someone says then it’s probably best to just say nothing if you can’t be constructive and respectful so that valued members don’t feel the need to go. Very sad.
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joziel… very sorry to see you go but totally understand. I’m so pleased that you are improving that is wonderful news. I too am improving and feeling a lot better I have had a really good few days and life is beginning to get back at long last to some sort of normality. We had a fantastic day out on my husband‘s birthday today something I couldn’t have dreamt of doing a few weeks ago. I just wanted to wish you all the very best in the future and hope you continue to improve which I am sure you will. Xxx
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Farewell Joziel, sorry to see you go, but not unexpected.
Your courage and determination to get to the route of your issues has been an inspiration and the knowledge you have gained and passed on to others on this forum will be sorely missed.
As Pippa has said it’s wonderful to hear of your improvement and I’m sure it will continue.
Fantastic that you’ve had improvements too Pippa!
I totally agree, Lara Briden’s books on menopause are about the best you can get and go beyond the normal mantra.
Hope everyone has a good day. x
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joziel im so happy to hear your heart is ok and you are feeling uch better. off the estrogen. Thank you for your help and advise on here, I will be sorry to see you go x
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I’m glad your heart is better and you’ve resolved your issues Joziel but I’m so sorry to see you go. Your posts were very helpful ❤️
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Hello lovely ladies, I know this thread has been dormant for a few weeks but I see that you've had a lengthy discussion about symptoms of oestrogen being too high, and I was wondering if I could jump on and pick your collective brains please as it looks like some of you have been in the same boat. I'm 45 years old and started Estradot 50mcg about 3 weeks ago, mainly for unbearable cortisol surges/panic/anxiety although I do also get night sweats and horrible periods.
I'm going absolutely demented with the oestrogen rollercoaster. On the day I put on a new patch, I feel like I'm on some kind of amphetamine for about 12-18 hours: jittery, wired, tense, extremely uncomfortable, with just occasional flashes of bright mood followed by high anxiety. The next day I feel a bit worn out and then I only really feel good and normal on the day before the patch is due to be changed again. I'm with the Newson Clinic and will try to get an appointment soon but it looks like some of you ladies were on a similar journey re: adverse effects of oestrogen, and I wonder if you could update me with anything you learned after a few months of trial and error? I kind of feel like my body must be absorbing a massive wallop of oestrogen on day one and then just tiny dribs and drabs by day three. I'm thinking about whether I should just go down to half a patch (25mcg) or just ask to be switched to gel so I can tweak it day by day. Thank you so much to anyone who sees this and replies, I'm going mad over here!
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Hi Peri
It sounds like you may have started on too high a dose. So yes you could half the patch and see if that helps.
Then by the time you get your next appointment you should know if it’s worked or not and can switch if necessary.
M x
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Hello ladies.
Peri2022 - I could have written your post lol!
I currently use one sachet of Sandrena gel but your experience of feeling drugged certainly resonates with me. Perhaps some of us absorb Oestrogen too quickly or unevenly?
I am also with Newson Health and, like you I will try to speak to my Dr asap.
I am sorry that you are also on this roller coaster but you are not alone and hopefully someone in the medical community can explain what is happening to us and provide an effective treatment!
I must also say that the lovely ladies on the forum have been an amazing source of support and good advice and I am sure they will help you too.
Wishing you well and take care.
K.
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As Kathleen so rightly says, we’ll all get there lovely ladies :)
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Thanks so much for your replies, it’s reassuring to know that I’m not alone and things may get better. I’ve been reading about ‘oestrogen dumping’ which apparently is when your body absorbs too much of the drug straight away, either because of your personal physiology or heat at the patch site. This sounds like me. I’m going to try taking half a patch every 2 days until I can speak to my doc and maybe try gel instead. I just want my life back, and not to feel like I’m wired to the moon on drugs half the time!
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Peri2022 - I was exactly the same as you with those symptoms when I was swopped onto patches and also the spray. It wasn't until I went back on my original HRT Oestrogel that I started to improve. Both the dose and the type of HRT proved the turning point after months of feeling like you did The patches gave me a huge jolt of oestrogen like it does you and also violent migraines. Wired describes it perfectly. Do hope you start to feel better soon xx
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Hi Peri2022,
Sorry to read you’re struggling. I very much relate to the HRT rollercoaster ride.
I felt exactly the same as you when I first started HRT. I was high as a kite, often felt like I was on the ceiling and other people noticed too. Rightly or wrongly I put up with it because it was mildly better than how I felt pre-HRT. I’d have done anything to not got back to the misery I felt without oestrogen. The good news is that it calmed down within a few weeks.
I started on gel, I prefer gel because it’s more flexible but once I’d got a steady estrogen level I found I was ok on patches too.
Whatever you decide, good luck.x
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Thank you all so much for your replies. Honestly I don’t know what I’d do without the wisdom and support of women on forums like this one! It’s reassuring to hear that others have had the same experience and improved over time. But also, it makes me bloody angry! HRT is presented in the media now as a miracle drug - and for many it is - but nobody tells you how painful and challenging it can be to get your treatment right. I had a long consultation with my Newson doc who was lovely, but if she had warned me that I might feel this way and explained why it might happen, it would have saved me a lot of desperation and sadness. Sorry for ranting but I just can’t believe what we all have to put up with! I work in women’s health so I thought I was pretty clued up but I have to admit this whole shenanigan has really shaken me up and opened my eyes.