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[joziel]

"Why this was not done as standard by Newson Health, "

.. because - why should it be done, if your serum estradiol is never high?

The amount you are applying externally to your skin (dosage) has often zero correlation to the amount you absorb (penetrance). Routine testing of women going by what they apply externally makes no sense.

[dangermouse]

Yes I get it, if they are doing blood tests and it’s about absorption.

Perhaps they should just do the scans etc when blood levels are higher than whatever the requirement is for the ratio of oestrogen to progesterone, as I am sure there were some accounts of the dose being raised based on symptoms alone.

[Sage 🍃]

Dangermouse, well said.

Liz Earle said 'Over 33,000 healthcare professionals have taken Louise Newson's course', and Liz thinks this is going to help women get their treatments on the NHS.

If that depends on the 'irrefutably safe information' that Louise Newson has been spreading, the NHS will have a hard time ahead.

'Irrefutably safe information' is unscientific rhetoric. Liz Earle's 3 own books on the table probably represent the extent of her 'researcher' status.



Joziel, 'if your serum estradiol is never high'? How does anyone know this?



Why continue to insist on something that doesn't work in the licensed dosage range? There are different HRT products to trial before prescribing off-licence doses.

Does Louise Newson try different HRT products? Are gels and patches absolutely necessary for 'poor absorbers', even if that means subjecting their skin to alcoholic gel or patches' glue daily, only to achieve low to medium levels of oestrogen? (according to your opinion, Joziel)

I think she is contributing to transdermal oestrogen waste, for the benefit of the manufacturers, the disgrace for the environment, and the potential risk for the patients, but I'm open to further discussion.

[joziel]

How do you know your serum estradiol is never high at any dose? There are women on 100mcg patches or 4 pumps of gel with 'high' estradiol doses.

For me, in the last 2 years my estradiol has been tested probably close to 10-12 times - and it has never been high, by anyone's definition. (Highest was 450pmol on the lowest dose of HRT I've ever been on, 37.5mcg patch. It was lower than that on 12 pumps of gel.)

Personally, I've tried Sandrena and Oestrogel before moving to a combination of Oestrogel and Estradot. So thanks for the advice to try 'different HRT products' before prescribing off licence. Done that. Sometimes it works but most of the time if women have issues absorbing transdermally (due to dry skin, thicker skin, too much/little fat etc etc), it's going to affect all transdermal methods.

No idea what you mean about 'subjecting skin to alcoholic gel or patches' glue daily. The frequency of application is exactly the same. I change my patches twice a week like anyone else. I don't change them daily.

Also no idea what magic solutions you would propose, seeing that injections are not available in the UK, pellets provide unreliable doses which can't be adjusted once inserted, and oral HRT carries the risk of blood clots and has to bypass the liver. I'd far rather take a higher transdermal dose.

The correct response really would be for manufacturers to recognise that women need higher doses and to manufacture more concentrated products which can provide these dosages in the same small patch size or just a few pumps of gel. Of course that isn't going to happen if everyone is sh*t scared of estrogen.

[Sage 🍃]

Thanks for replying.

How do you know your serum estradiol is never high at any dose? There are women on 100mcg patches or 4 pumps of gel with 'high' estradiol doses.

'Never' is not the most accurate term to refer to something that may (or may not) only apply to you, hence my question.

For me, in the last 2 years my estradiol has been tested probably close to 10-12 times - and it has never been high, by anyone's definition. (Highest was 450pmol on the lowest dose of HRT I've ever been on, 37.5mcg patch. It was lower than that on 12 pumps of gel.)

This is your experience, which is valid, but can't be used as an argument to defend Louise Newson's approach to the patients that have been treated with higher oestrogen doses, despite feeling that their symptoms were getting worse.

I think 450 pmol on the lowest dose of HRT is a considerable level of oestrogen, don't you? And why 12 pumps of gel, if that doesn't even equal what you had with the patches? Just trying to understand, but I'm aware yours can be a unique case, as it often happens.

Personally, I've tried Sandrena and Oestrogel before moving to a combination of Oestrogel and Estradot. So thanks for the advice to try 'different HRT products' before prescribing off licence. Done that. Sometimes it works but most of the time if women have issues absorbing transdermally (due to dry skin, thicker skin, too much/little fat etc etc), it's going to affect all transdermal methods.

I was referring to the doctor (Louise Newson), not you 'personally', but I understand that you are feeling 'empowered' enough to take control of your own treatment, which can be a good thing, if you are aware of the potential risks.

No idea what you mean about 'subjecting skin to alcoholic gel or patches' glue daily. The frequency of application is exactly the same. I change my patches twice a week like anyone else. I don't change them daily.

I'm referring to the amount of gel and glue. Applying 12 pumps of gel daily is not the same as applying 4 pumps of gel daily. Applying 3 patches twice a week is not the same as applying 1 patch twice a week, considering the fact that you have to change application sites constantly.

Also no idea what magic solutions you would propose, seeing that injections are not available in the UK, pellets provide unreliable doses which can't be adjusted once inserted, and oral HRT carries the risk of blood clots and has to bypass the liver. I'd far rather take a higher transdermal dose.

There are no magic solutions, including upping oestrogen doses for 'poor absorbers', that's exactly the point.

'I'd rather take a higher transdermal dose'... despite...?

The way you and Louise Newson put it, sounds as if high transdermal oestrogen doses have no risk at all, and this argument is often followed by the 'there are not enough studies' mantra to justify this approach, which is a fallacy. If there aren't enough studies regarding high doses, how can all patients be informed about the potential risks?

The correct response really would be for manufacturers to recognise that women need higher doses and to manufacture more concentrated products which can provide these dosages in the same small patch size or just a few pumps of gel. Of course that isn't going to happen if everyone is sh*t scared of estrogen.

That's not how it works. Manufacturers have to provide scientific evidence before having their products approved. It's a lenghty and expensive process.

By the way, do you know that it's much more expensive to put very small amounts (micrograms) of estradiol in a patch or gel than milligrams in a pill? And that's not just because manufacturing patches and gels is more expensive, it's also due to the fact that small amounts of estradiol molecules are more unstable than large amounts, which affects their bioavailability. Someone posted this on MM a while ago, I can try to find the link if you're interested.

Maybe that's one aspect (often disregarded by doctors who don't know how patches and gels work) that can affect absoption for some patients, after all not all patches and gels are exactly the same, many Oestrogel users have been experiencing inconsistencies for some time now, and I don't see Dr Louise Newson talking about it, apart from one lot of 'faulty pumps'.

[joziel]

I can't speak about the 5 other women mentioned in the Panorama interview. But I'm clearly one of the 45,000 of us not interviewed, who is extremely happy to have found a clinic prepared to actually treat me with hormones instead of anti-depressants.

"I think 450 pmol on the lowest dose of HRT is a considerable level of oestrogen, don't you? And why 12 pumps of gel, if that doesn't even equal what you had with the patches? Just trying to understand, but I'm aware yours can be a unique case, as it often happens."

It's not about serum estradiol levels. It's about symptoms. You do realise that in peri, much of that extra 450 was created by my own ovaries? And two days later could well be something like 50pmol? Of course, you don't know (because I didn't mention it) that on 65mcg patch my level was 170pmol. And that on 50mcg patch it was 150pmol. So clearly that 450pmol on 37.5mcg patch was largely made by my own ovaries... And doesn't represent what I was cutting out to.

My results have included 250pmol on 4 pumps of gel. 330pmol on 6 pumps of gel. Still 330pmol on 12 pumps of gel.

Why go up to 12 pumps of gel? Because my levels increased between 4 and 6 and we wanted to trial getting them higher to see if that helped with symptoms.

Frankly, I was near to killing myself because I was only getting 3 hours of sleep a night. I was shaking through the night in my sleep to the point that the bed felt like it was moving under me, with inner tremors. My heart was beating over 100bpm in my sleep (tested with Apple watch and ECG machine attached to iPhone) when my resting pulse in my sleep is usually in the 40s. Every time I felt like I might fall asleep, I was jerked awake with a hypnic jerk....

Since increasing my estrogen to (we estimate) the range of 450-650pmol, I am finally able to sleep about 6 hours a night now - and most of these symptoms have reduced to the point that they are barely noticeable.

So you can say whatever you like about 12 pumps of gel and high estrogen dosages, I would a thousand times over choose the treatment I'm currently receiving over a 'computer says no' response to above licensed doses.

Your care and concern about the application of alcohol and gel to women's skin is extremely moving, but please don't trouble yourself about it. I'd rather take 5 extra minutes applying HRT than lose 5 hours of sleep lying awake, not to mention being unable to work and having my relationships fall apart because I can't function.

As for 'risk', the greater risk, for me, was death due to suicide. Marriage breakdown due to lack of sleep. Loss of income and then house as a result, because I can't work. Those 'risks' off-set the very low risk of taking above licensed doses when !) my serum estradiol has never tested high (sorry, there's that 'never' thing again, but really it means 'something that hasn't happened yet', just to spell that out), 2) when I am on plentiful amounts of progesterone continuously and 3) when I am not having random breakthrough bleeding, sore boobs or any other high estrogen symptoms. I would much rather take body identical hormones than anti-depressants and sleep meds - all of which have proven side effects which in my mind are far greater than natural hormones.

Of course manufacturers have to have products tested and trialled before being manufactured. That doesn't mean they shouldn't be testing and trialling them and bringing them to market.

And of course there is a lack of research, but because this is women's health and there is no money in it, it is unlikely that much research will be done any time soon - and personally I would rather not sit around with the life I had before, waiting for something which may never happen. I value the CHOICE to take the dosage I need - as clearly do many others.

I can't be bothered to argue back with you any more so won't be posting again.

I find it offensive that you want to question my treatment and decisions - without knowing anything about my history or experiences.

[margherita]

I can't speak about the 5 other women mentioned in the Panorama interview. But I'm clearly one of the 45,000 of us not interviewed, who is extremely happy to have found a clinic prepared to actually treat me with hormones instead of anti-depressants.

"I think 450 pmol on the lowest dose of HRT is a considerable level of oestrogen, don't you? And why 12 pumps of gel, if that doesn't even equal what you had with the patches? Just trying to understand, but I'm aware yours can be a unique case, as it often happens."

It's not about serum estradiol levels. It's about symptoms. You do realise that in peri, much of that extra 450 was created by my own ovaries? And two days later could well be something like 50pmol? Of course, you don't know (because I didn't mention it) that on 65mcg patch my level was 170pmol. And that on 50mcg patch it was 150pmol. So clearly that 450pmol on 37.5mcg patch was largely made by my own ovaries... And doesn't represent what I was cutting out to.

My results have included 250pmol on 4 pumps of gel. 330pmol on 6 pumps of gel. Still 330pmol on 12 pumps of gel.

Why go up to 12 pumps of gel? Because my levels increased between 4 and 6 and we wanted to trial getting them higher to see if that helped with symptoms.

Frankly, I was near to killing myself because I was only getting 3 hours of sleep a night. I was shaking through the night in my sleep to the point that the bed felt like it was moving under me, with inner tremors. My heart was beating over 100bpm in my sleep (tested with Apple watch and ECG machine attached to iPhone) when my resting pulse in my sleep is usually in the 40s. Every time I felt like I might fall asleep, I was jerked awake with a hypnic jerk....

Since increasing my estrogen to (we estimate) the range of 450-650pmol, I am finally able to sleep about 6 hours a night now - and most of these symptoms have reduced to the point that they are barely noticeable.

So you can say whatever you like about 12 pumps of gel and high estrogen dosages, I would a thousand times over choose the treatment I'm currently receiving over a 'computer says no' response to above licensed doses.

Your care and concern about the application of alcohol and gel to women's skin is extremely moving, but please don't trouble yourself about it. I'd rather take 5 extra minutes applying HRT than lose 5 hours of sleep lying awake, not to mention being unable to work and having my relationships fall apart because I can't function.

As for 'risk', the greater risk, for me, was death due to suicide. Marriage breakdown due to lack of sleep. Loss of income and then house as a result, because I can't work. Those 'risks' off-set the very low risk of taking above licensed doses when !) my serum estradiol has never tested high (sorry, there's that 'never' thing again, but really it means 'something that hasn't happened yet', just to spell that out), 2) when I am on plentiful amounts of progesterone continuously and 3) when I am not having random breakthrough bleeding, sore boobs or any other high estrogen symptoms. I would much rather take body identical hormones than anti-depressants and sleep meds - all of which have proven side effects which in my mind are far greater than natural hormones.

Of course manufacturers have to have products tested and trialled before being manufactured. That doesn't mean they shouldn't be testing and trialling them and bringing them to market.

And of course there is a lack of research, but because this is women's health and there is no money in it, it is unlikely that much research will be done any time soon - and personally I would rather not sit around with the life I had before, waiting for something which may never happen. I value the CHOICE to take the dosage I need - as clearly do many others.

I can't be bothered to argue back with you any more so won't be posting again.

I find it offensive that you want to question my treatment and decisions - without knowing anything about my history or experiences.

Very well said

[Seasidegirl]

 Well said Joziel

This discussion really demonstrates what makes me angry about the Panorama programme and the state of menopause "care" in  England currently.   It's a polarised topic where the need for some to prove themselves right and others wrong is an academic argument and a sport.   This comes at the expense of those woman who are suffering and struggling to cope.   

The NHS resourcing issue is bad enough without bodies like the BMS taking this polarised stance rather than focusing on agreeing (not imposing) better guidelines and advice. 

I'm struggling to take "enough" progesterone each month,  I'm trying to understand exactly what risk this brings and it's really difficult as there is little research and much of the information stated is not backed up by published and linked research.   Lots of robust, polarised opion but  few facts. 

I read a quote from a HCP the other day that said that gynaes seem to be concerned about the number of referrals for unscheduled bleeding for women on HRT so their approach seems to be moving towards prescribing increasingly higher levels of progesterone to reduce the demand.   So we're told that there is no evidence for increasing oestrogen but it's OK to keep increasing P to much higher levels with (it appears) little consideration or evidence of the risks that this might bring,  let alone consideration of the balance of hormones and how it might make women feel. 

[CLKD]

Stick around joziel - it's what forums are for, discussion - often heated because the written word is static.

Out of interest and because I have yet to watch the programme: were all the ladies interviewed white because it is known that black skin makes absorption more difficult?  [I'm too angry yet to watch  ]

Sometimes patients have to work with medics who are prepared to 'experiment' regardless of risk, in order to help with easing symptoms and for progress.  For example, heart as well as kidney and lung transplants were pioneered when many medics thought these operations impossibly dangerous. 

[Ayesha]

Joziel, you've put up a great defence given the third degree cross examination you have been put through on this forum.
Well said and well done! 

[CrispyChick]

I dont think anyone should be questioned or have to defend their individual circumstances or decisions that have been clearly thought out.

But I thought the main point of the whole LN uproar and panorama programme was the adopting of the very high estrogen approach as a mainstream approach. Which is not the same thing as an individual needing higher E, because it's proven they don't absorb.

 

[Ayesha]

Back in the day when Dr Miriam Stoppard was the HRT guru I was given HRT in pill form, that's all we had back then, but taking a pill every day was too much oestrogen for me, unpleasant side effects, so I took it upon myself to take a pill every other day and it suited me perfectly. When I told the GP what I had done she was very unhappy and gave me a right old telling off, telling me all the terrible things that could happen. I fought back and said we are all different and I as a very small woman could not take the dose as prescribed. I was absolutely fine on my regime for five years but was glad to come off HRT because of all the hassle that went with it.

Moral of the story, we are all individuals when it comes to treatment and it seems HRT continues to be the poison challis and anyone thinking outside the box shot down in flames.

[joziel]

I'm not going anywhere  just not replying to the OP any longer to continue that convo.

Crispy, I haven't seen any evidence of high E doses as 'a mainstream approach' by Newson. The problem is that it is absolutely impossible (okay almost) for a woman to get prescribed above licensed doses by their GP. And there is an 18 month waiting list to get referred to an NHS menopause clinic. So what are all these suffering women who need higher doses supposed to do...? They go private. The NHS simply gives them no other options. That, or suffer. Or take a slew of psychiatric meds.

Which is all to say: The patient body which Newson Health has is already skewed towards women who need higher doses, simply because their needs are not being met elsewhere. It's a self-selecting population. There is a special irony about a system which fails women but doesn't care about that, then an organisation like Newson Health stepping in to meet their needs - and getting crap for it. Yes, there may be increased risks to treating this population - but does that mean no one should take that risk? Or the risk should be shunted out to Newson Health who can then be finger-pointed at, when the (inevitable) slightly increased risk becomes manifest?

Newson ran a survey and found that 25% of women registered with them don't absorb E well and need these higher doses. I don't know what the % is for women getting HRT from their GPs (assuming they even know they need higher doses and are not just being put on anti-depressants and fobbed off) but I'd bet it is lower in the general population.

I didn't know I needed higher doses when I first went to Newson. I went there because I was 42yo and my male GP had dismissed my symptoms and told me I was "too young" to have peri symptoms and that my bloods were "fine". He referred me to rheumatology for my joint pain. (Rheumatology told me to go on HRT and then come back, so maybe the message is getting out slowly.)

When I started at Newson, I was put on just 12.5mcg (half a 25 patch) and then increased to 25mcg and then to 50mcg, where I stayed for about 6 months. I wasn't just immediately put on high doses of E. That is happening for women who come to Newson already on the max licensed dose but still with symptoms - and Newson are then increasing above that accordingly.

I would say that I think Newson have in the past been a bit relaxed about P usage. I've always tolerated it well and taken a good amount of it but I do think that, in the past, if women couldn't tolerate it, they allowed them to take less. That might account for the cases discussed in the Panorama show. But I think that changed in recent years.

[Sage 🍃]

This thread is about Louise Newson, not you or me, Joziel. I could write an essay about my perimenopause experience, but I think it wouldn’t be of much help, given that we’re all different, but I know how sharing and venting can be very helpful during this extremely stressful time.

I’m not questioning your treatment or your decisions. I’m discussing Louise Newson’s approach to treating patients with higher doses of oestrogen, and you are one of her patients on higher doses, because you are, according to her, a ‘poor absorber’ and also according to yourself and your blood tests results.

You have posted about your 12 pumps of gel plus a patch treatment a dozen or more times, sometimes encouraging other women to increase their oestrogen dose. Why is it alright to post about it but it’s not alright to discuss it?

Again, I’m not questioning your personal issues, all women in this forum have/had a lot of symptoms and each one has been struggling with something (health, marriage, children, work, ageing) that peri and menopause can negatively influence, so it’s quite pointless to dwell on them, bar for the sake of reassurance and support.

Good to know you are extremely happy to have found a clinic prepared to treat you with hormones instead of anti-depressants, although I don’t think they are mutually exclusive. Long may it continue.

’It’s not about serum estradiol levels. It’s about symptoms’

I agree. And yet you post a lot about serum estradiol levels and based on them you tweak your HRT regime, dosage and dose. I don’t know if you still discuss your treatment with Newson Health doctors, do you? Some women might be encouraged to do experiments with HRT without proper monitoring, but hey, we’re all adults, right? Live and let live/die.

‘Your care and concern about the application of alcohol and gel to women's skin is extremely moving, but please don't trouble yourself about it.’

I’m not troubling myself about it, this is a discussion forum, I’m discussing facts, not personal options or emotional responses to facts. It is troubling.

‘As for 'risk', the greater risk, for me, was death due to suicide. Marriage breakdown due to lack of sleep. Loss of income and then house as a result, because I can't work.’

I know what you mean, the same has happened to me. Although my suicidal ideation only happened after taking Utrogestan. Again, each personal experience is different. I can empathise, and if your current regime has controlled your symptoms, great, and if the benefits outweigh the risks (although they’re not entirely clear at this point, hence the discussion), great.

But why, oh why can’t I talk about it? You, Liz Earle, Louise Newson & Co can criticise the BMS, Paula Briggs, Heather Currie, and many other GPs and doctors using words like ‘gaslighting’, ‘scare mongering’, ‘witch-hunt’…

Quoting you, Joziel:

‘There is an absolute witch-hunt against Louise Newson going on behind the scenes - which extends to kicking her out the BMS. There are people in this thread saying 'but she has been kicked out the BMS' [shock horror] as if this is now proof that she is a dodgy doctor - rather than realising that the BMS would have us all dissing HRT and has been dragged screaming away from the WHI study, never really refuting it with any explicit statement to equal the intensity of their initial support of it. The BMS is ultra-conservative and relies on research which is outdated and incomplete (there will never be funded research of the sort which is needed because this is women's health and we are not talking about new drugs here, but cheap hormones). That doesn't make it any more 'right’.’

So you can criticise, but you can’t take criticism.

Quoting you again, Joziel:

‘Secondly, I can 100% guarantee that for every woman interviewed in that Panorama programme with some scary story about high doses of estrogen, they could, IF THEY'D WANTED, easily have found as many women - actually even more - who would have told stories of NEEDING those doses and not having symptom resolution on lower doses, besides having no side effects from this dosage. (Newson herself is just one such case. Me being another. Hundreds of thousands of other women all over social media who are her patients, being more.) The fact that they only interviewed women touting this one angle was incredibly one-sided and unfair and I really hope Newson has got her lawyers on this for sure. That is not neutral and unbiassed journalism, it's professional assassination and a take-down and slander - to present such a one-sided view.’

‘Professional assassination’, Liz Earle starts her video with ‘Forensic investigation’. FFS, are you really getting emotional balance from HRT and Newson’s Health app?

As for you, ladies, who are prompt to give your emotional support without discussing facts, all I can say is ‘sigh’.

I don’t post on MM any more because this forum is currently mainly about HRT, nothing against HRT, it’s just not the main subject of my menopause journey.

I wish you all good luck.

[Wren]

It frightens, and angers, me that this ill-researched programme could have repercussions on the already dismal NHS menopause information available.
 
Thanks for the links in your post 23/10/24 joziel re Liz Earle's video and info on links to BBC and Ofcom.  I am about to make use of them - having noted the deadline for Ofcom complaints is today.

  Missed the Ofcom deadline - got my BBC complaint in but I need the BBC reply to do an Ofcom complaint.