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[Pippa52]

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  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

[Pippa52]

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

[joziel]

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 

[Pippa52]

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

[joziel]

Hi Pippa, I envy you having someone you can make an appointment with so easily    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...

[Pippa52]

Hi Pippa, I envy you having someone you can make an appointment with so easily    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

[Pippa52]

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

[Kathleen]

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.

[Marchlove]

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.

[Pippa52]

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

[Pippa52]

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

[joziel]

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!?  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...

[Pippa52]

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

[Pippa52]

Hi ladies - latest update - this is becoming like a hormonal blog 

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

[Gnatty]

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?