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[lillith112]

We are all having a crap time of it at the moment   

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 ?

[Pippa52]

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

[joziel]

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.

[Pippa52]

joziel - so so pleased you had a better night that is great news.  xxxx

[lillith112]

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 ?

[joziel]

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    I really hope I don't need to reduce further and can now stabilise at 50 patch....

[Starbaby]

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.

[joziel]

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. 🤯

[Pippa52]

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

[joziel]

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...

[lillith112]

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 😥

[Pippa52]

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.''

[Pippa52]

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

[Pippa52]

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

[lillith112]

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 ?