Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[Teresa]

Hi All,

I posted this week  about my issues with low estradiol after nearly two years on HRT ( Thankyou to those who responded) but I  wanted to ask a direct question to any of you who are on a higher than 100 mcg oestrogen amount ( so above the ‘guidelines’) due to symptoms, but especially due to low estradiol blood test results. If you are on a higher dose, how did you manage to obtain these?

I have what seems to be a declining estradiol amount in my blood, even though I’ve been on a 75 mcg patch for 18 months. My recent blood test shows  only 88 pmo/L. It’s not worth me being on HRT at this level.

Just before I went on the 75 patch from a 50, eighteen months ago, it was 106 pmo/L, so it’s actually got worse. I am seeing a private gynaecologist ( who is also NHS) on Monday to let her know of this result and to ask for an increase in the patch. I have seen her a couple of times already about my HRT and she has recently increased my patch to 100 Mcg, but I have my doubts about her reaction about going higher. Eventually, I imagine I need at least 150 mcg, based on results. She also wasn’t prepared to prescribe me more patches, so I could change one every 3 days, instead of 3.5 days as I feel I need to change more frequently. I struggle with insomnia and anxiety. I also worry about bone health, which was a big reason for me wanting HRT as both my parents had osteoporosis.

I am pretty certain it’s another medication that I take called carbemazepine that is responsible for the fact that I don’t absorb oestrogen very well. It’s ‘known’ to do this and is also reflected in the NICE interactions ( that  the NHS use). Unfortunately it’s not a medication I’d be able to change, especially as I’ve been on it for nearly 30 years.

So, to recap, if you are one of those ladies who is currently on a higher amount than the ‘recommended’ maximum, please can I ask, how did you get it? 

Thankyou,

Teresa

[CLKD]

I can't remember but have you been seen by a dedicated menopause clinician?  U could send an e-mail to Dr Currie who runs the Forum, for a fee.  A specific query regarding interactions between your HRT and your regular medication.  Let us know how you get on. 

Blood tests for hormone levels are reliably un-reliable.

[Teresa]

Thanks CLKD,
I have only seen the Gynae doctor, but she is apparently a menopause specialist ( which is why I saw her). I have contacted Dr Currie in the past for other things, but I think I need to speak and see someone face to face for this and to know my history.
I know they can fluctuate but I think post menopausal the fluctuation is a lot less? And to have two estradiol tests around the 100 mark or less, I’m thinking they must be that low and the way I’ve been feeling for this length of time too.

I just wanted to know how ladies in this forum managed to get their HRT at a higher dose as I know there are some.

Thank you for coming back.
Teresa

[Jjumper]

Hi Teresa

Like you, I am an extremely poor absorber. So I am on a dose much higher than the NHS cut off. My private doctor (Newson) writes to my GP to politely request that they prescribe the higher dose for me, which they do.

Hope that helps.

[Teresa]

Hi Jjumper,

Thankyou sooooo much for coming back. I was beginning to give up hope. I saw the gynae yesterday and told her of my latest readings of 88 pmo/L (after two long years on HRT) and although she sympathised and said they were low, she said she couldn’t prescribe me anything above a 100 patch  she said perhaps I needed to go a synthetic oral Estrogen instead, but I’ve tried that, right at the beginning and that was worse and I never wanted that type of estrogen as it didn’t suit me at all. She said she would ‘get into trouble’ if she prescribed a higher dose for me, but I kept repeating that I’m clearly not absorbing it and there are women who take higher doses purely on that fact.  I was looking at other on line clinics last night and this morning, in the hope that some of them don’t just think that one size fits all. I’ve been feeling very sad about it all and a bit emotional 

Please can I ask what your absorption levels were, what PMO/L  you need to aim for and what Estrogen patch/gel /pill amount you have now?

Thankyou so much,
Teresa

[Jjumper]

Hi Teresa,

I'm really really sorry, but I don't really want to give exact details of my blood levels and current dose. I'm sorry as I know that I would love to have this sort of information too - information about this sort of thing is so scarce and would be really helpful and reassuring for those of us in this position. I will try to explain why I don't want to share below and I hope you understand.

It has taken me a long time to accept that my problems are caused by low estrogen. I have not yet achieved full symptom relief (have been on HRT over a year) and it is immensely frustrating that I am both a poor absorber and someone who needs high levels to even begin to achieve symptom relief. Every time I increase my dose I get a tiny reprieve for about a day and that's about it. I still regularly doubt myself and think that it is something else causing my problems and from time to time I even worry that I am on too high a dose, even though all evidence points to low estrogen being the cause. Luckily I am under the care of a doctor who is very much in agreement with me which helps me to stay on track. It has been my observation over the last year of being on this forum, that there is some judgement from some members on here about high doses, and I really want to avoid any of that, as it would cause me to doubt myself even further. So I'd prefer to keep details general for now.

I suggest you take a look at this guidance for practitioners from Chelsea and Westminster: https://www.chelwest.nhs.uk/professionals/gp-hrt-advice-guidance
In the Clinical Considerations and Troubleshooting section there is a bit about hormonal depression which gives dosing guidelines.

You could also look up Dr Studd's work, which I think talks about levels of 600pmol/l to treat depression, achieved through a 200 patch. I can't find the reference, and I don't have time to look now I'm afraid.
 
As I understand it Dr Louise Newson is also working on research about doses so hopefully that will be out soon as we desperately need this sort of information.

That's all I can think of for now.

[meno-mel]

Hi Teresa & jjumper, I'm sorry you both have such trouble absorbing oestrogen.
I'm at the start of this journey, tried Evorel Conti which was ok for symptom relief but crashed my mood into a cliff face, then I tried Evorel50 with various progesterones.
Evorel50 doesn't work as well as Evorel conti did for the symptoms and all the progesterones so far have made me suicidal, even utrogestan.
Is it worth trying other brands, for example if I'm not absorbing Evorel would estradot or a spray or gel be better?

I'm under an NHS meno clinic so I don't have blood tests, do you think it's worth getting the levels tested?

Jjumper, you are right to keep your details private, there would be complaints that you weren't representing the average woman and you'd risk getting deleted.
Dr Who comes to mind with cybermen chanting "delete", rationally identical I guess 

[Teresa]

Hi JJumper,

Thanks for coming back and I do understand and I’m sorry to read that you’ve been judged in the past  it shouldn’t be such a struggle for some of us should it? Not in 2023.
Thankyou for all the links - I will have a look at them and I appreciate you attaching those. It’s funny you say about getting a reprieve for a day when you change your dose…I feel like that when I change my patch half way through the week, it’s like I get a surge and feel better, a few hours after the change and then it goes back down again, a few hours later.

Good luck in the rest of your journey and I hope things work out for you.

Thanks again for your help,
Teresa

[Teresa]

Hi MenoMel,

Thanks for coming back. It’s very hard isn’t it, all this HRT stuff and it shouldn’t be so difficult to navigate for us….unfortunately I’ve tried a few different preparations now for my Estrogen. I did start on Estradot 25 and then progressed to Estradot 50, but then there was a shortage back in 2021 so that’s when I got Evorel, which I stuck with for a few weeks, then I moved up to 75 as my levels were low. I then couldn’t get Evorel, so went to Estradot and I felt awful 😞 then the Evorel magically came back into stock so I stayed on it for nearly 18 months but still ‘suffered’ silently. I’d had enough of this suffering, so saw a gynaecologist & In the past couple of months I’ve since tried Estrogel and couldn’t sleep - at all, on the two days I applied it my anxiety was through the roof …I couldn’t risk it for a third day, so went back to Evorel pretty sharpish….was on that for a couple more weeks, then got my estradiol results which showed my Estrogen was even lower….I then got a private prescription for a 100 patch which is Estraderm, which I’m not a huge fan of, but I’m unable to get a GP appointment until next week, to get more Evorel 100 to tide me over 
saw a gynaecologist yesterday who prescribed me Lenzetto and told me that 3 sprays were the equivalent of a 100 patch….I’ve since googled and see the BMS website say it’s the equivalent to a 50 Patch  so I’m not going to get that, it’s not worth the risk. She was adamant it was 100. I’ve also read mixed reviews on Lenzetto and as I’m such a poor absorber anyway, it’s a no from me, sadly.
I’d have hoped the NHS meno clinic would offer you a blood test to check your levels, it was my GP who agreed for me to have mine done, though I know they always say to go by ‘how you feel’ - but if your symptoms are much better then it must be working? I wanted a blood test, because of some issues I still have and I now know why I still have these issues, as the test has confirmed it. If you don’t feel that great though, I would ask them if you can have your levels tested.

Teresa

[Winterose]

I have been on Hrt for 16 years , starting on 75 and then 5 years or so ago moved to 100 , 2 years ago symptoms returned so I just cut up the patches so was getting roughly 125 and that stopped the symptoms . It stands to reason if we get symptoms as oestrogen declines then upping the dose if there are no contradictions seems reasonable.

I use Evorel

[Teresa]

Thanks Winterose,

Thanks for coming back. The trouble I have found is that no GP or gynaecologist is prepared to actually prescribe above the maximum dose of 100. I could cut them up and add more but I’d struggle to get above my ‘requirement’ via my Dr on prescription, to enable me to add more. My prescription doses are ‘timed’ and if I try and order early, it gets rejected. You are doing very well if you are able to get higher amounts via your surgery. I didn’t want to get used to a higher dose then find I ran out.

I’ve since had an on line meeting with a menopause specialist…who can prescribe above doses ( in the right circumstances) but I’m actually trialling Lenzetto now, which I know is supposed to be a lot lower…however, I’m pleased to say it amazingly appears to be working so far…I’m only on Day 4 and already my sleep has improved immensely and I’m feeling better in myself. Just hope I don’t crash or something  - must be something to do with the place it’s put and the mechanism it has for absorption as it’s so different to gel or patches. I’m keeping everything crossed for now…
Thanks again,
Teresa

[Winterose]

Glad about Lenzetto working for you . I’m sure there’s absorbency issues too which must vary for us all which means you have to take a higher dose to get the benefit of the lower one if you see what I mean.
Yes lucky that my requests for Hrt aren’t timed , when I’m about to run out I just order more .
Haven’t even been in for a check over Hrt for 4 years as surgery is struggling with admin but I regularly take my own blood pressure and keep weight down . I don’t drink very much as alcohol makes me feel rough so feel I balance out health “ risks” the extra oestrogen gives with pretty much a no drinking regime .

Am sure in 30 years or so they will have all this cracked but until then it does seem a bit hit and miss .

[Teresa]

Hi Winterose,
Thanks for coming back….I’ve been thinking about this absorption ‘lark’ a lot and I think the problem for me, is that because I absorbed virtually nothing, ( probably nothing at all actually) from a 75 mg patch, then if I absorb from a 35 mg or a 50 mg dose of Lenzetto and my oestregen rises above 88 pmo/L to say 300 or whatever, I might be ok with that….and perhaps they’ll even suggest 4 sprays, if it’s nearly there….I don’t know. I do feel ‘better’ though not perfect….You are lucky managing to obtain HRT as you need it. I use an app to order my HRT and meds and I just can’t order too early as it stops me and gives me the date for when I can.

It’s not great though, if your surgery is struggling like this as it could impact their patients. They should be doing periodic checks or blood tests now and then to keep an eye on you and others. Doesn’t sound like they’d have time to check results though from what you say.

All the best to thou,

Teresa

[Winterose]

Funnily enough just after I wrote this I got a call from surgery saying my Hrt review was overdue so they are now catching up .

Also interested in the lady posting about progesterone after a full hysterectomy.  I feel we only have some of the picture .

I was on Estradot which I loved because it was so small but when it was in short supply I was switched to Evorel and felt better on it . Am sure that’s down to absorption

[Winterose]

I’ve never been given a blood test for the whol,e time I’ve been on Hrt - is this standard or do people get one once a year?