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High dose HRT controversy

64 replies

Companyofwolves · 02/04/2023 02:37

Just seen this & a bit shocked.

I know she has encountered a lot of obstacles by a profession reluctant to admit their failings & change.

I feel like she’s such a trailblazer who genuinely wants to improve menopause care for women & is now being discredited for thinking & treating outside the box (of traditional menopause care).

Clearly research & development is much needed in emerging treatments & practise in menopause which has been massively under funded & under acknowledged to date.

So I don’t think she should be thrown under the bus for trying to do that on a case by case basis.

But obviously practise needs to be safe.

Thoughts anyone? It is in the DM & couldn’t see it in any other outlets.

https://www.dailymail.co.uk/health/article-11927783/Is-Britains-foremost-menopause-doctor-risking-womens-lives-alarmingly-high-doses-HRT.html

Is Britain's foremost menopause doctor risking women's lives?

Government adviser Dr Louise Newson - who also featured in TV star Davina McCall's trailblazing 2021 documentary Sex, Myths And The Menopause - is allegedly offering 'high doses' of HRT.

https://www.dailymail.co.uk/health/article-11927783/Is-Britains-foremost-menopause-doctor-risking-womens-lives-alarmingly-high-doses-HRT.html

OP posts:
Xrays · 02/04/2023 10:07

Companyofwolves · 02/04/2023 10:04

@Xrays this is interesting. Glad you’re getting the correct treatment now though via the nhs.

Thank you. I do think Newson is fantastic for very straightforward HRT requests where women don’t have other conditions. But then they’re simply doing what ALL GPs should be doing. They’re just a collection of doctors who have had menopause training - the same training all doctors should be having.

Abra1t · 02/04/2023 10:08

JinglingSpringbells · 02/04/2023 10:05

Is it that 'gold standard' Utrogestan simply doesn't work very well for a number of women?

No, it's more that all women respond differently to estrogen depending on their estrogen receptors.

Some have more in their womb, others in their breasts. Some women's boobs grow on HRT, some don't.

The other thing with you is that you may have had polyps or a thicker lining all along and didn't know - unless you had a scan prior to HRT. It's possible that HRT just tipped it over the edge so you got some bleeding.

There are also other factors involved in hyperplasia including women's weight, smoking, amount of exercise, etc.

There are other types of progestins like Norethisterone and MPA but these are known to have a higher risk of breast cancer especially when used daily.

Hyperplasia is more easily treated, in comparison.

I hope you get the all clear soon!

Thank you! Yes it's been a long three years.

I'm slim, fit, don't drink more than very moderately and eat a good diet, so wouldn't normally be considered at high risk for atypical hyperplasia.

Abra1t · 02/04/2023 10:09

And good point about not knowing whether i already had some polyps or hyperplasia before HRT started.

Companyofwolves · 02/04/2023 10:14

Thanks @Xrays that’s really informative & cautionary for us all too. Hope it comes back clear for you 🤞

OP posts:
JinglingSpringbells · 02/04/2023 10:14

Abra1t · 02/04/2023 10:09

And good point about not knowing whether i already had some polyps or hyperplasia before HRT started.

When I first saw my consultant (not about periods or meno) I was booked in that day for whole MOT of tests- internal scan, blood tests, internal examination. I was found to have an ovarian cyst which was benign thankfully, but I was scanned every 4 months for 2 years (till it went away.) I had no symptoms (it was small) but when I did start HRT a year or so later, it meant that I didn't link the cyst to using HRT and also HRT didn't make it grow.

ScooperPooper · 02/04/2023 10:17

It's not as easy to start research trials. They need funding by a pharma company. Also, you'd be asking women to either take a huge dose of estrogen that may cause cancer or use placebos

Jingling yes you’re right. I’m not a research expert but obviously there are many different kinds of research. So if you’re saying only clinical trials are worthwhile but they’re expensive, then I’m pretty sure the HRT product companies and Dr Louise Newson’s private business and others are making very good profits so they could chip in to fund this. There’s also research councils to fund work in the UK with public money.

However could there not be other types of research done less rigorously but cheaper and quicker? They could help to focus the questions that clinical trials ask. Since a lot of data is recorded these days, couldn’t there be data analysis of what high doses women have been prescribed and their self reported symptoms and their health outcomes? very detailed data is asked for by the Balance app so that’s a great resource and women’s NHS records show what happens over time.

For all I know this could be already be being done, but it sounds like something needs to change here. Women deserve to feel confident that the treatment they are getting is the most effective and safest according to current knowledge and that should be accessible to everyone.

JinglingSpringbells · 02/04/2023 11:02

@ScooperPooper The research is already there. Google estrogen / HRT and endometrial hyperplasia.

Pharma generally only does research if they are producing drugs that will benefit them in the long term. To provide money to prove something detrimental (in a high dose) is not in their interests, especially as HRT is dirt cheap to produce and they make very little profit from it compared to other drugs.

Observational data based on women's experiences isn't always worthwhile - many of the stats on breast cancer are based on these types of data and are shown later to be flawed as there are so many other variables that could affect the results.

It's already known that high, unopposed estrogen (with no or too little progesterone) can cause hyperplasia. What is needed if it's given off-licence, is careful monitoring of each woman, with regular scans and usually more progesterone to off-set the risks. It's pretty simple and anyone on a off-licence regime should be advised of the risks, and also informed that an annual scan (privately) is part of the treatment plan.

Choconut · 02/04/2023 11:36

ScooperPooper · 02/04/2023 08:08

Well- Tall poppy syndrome dictates the press would have wanted to clip Dr Louise Newson’s wings anyway at some point simply because her profile is high so they can sell a story out if it. In itself doesn’t mean she’s wrong or right.

Secondly- if the research is needed, is Louise Newson doing research on it? If not why not? She’s already got hundreds of women’s data about symptoms from the Balance app to combine with the exact dosages that her clinic has prescribed them. The NHS can’t access that data because it doesn’t prescribe that high. So only Dr Newson has that data and by looking at it researchers can know exactly what cause and effect is.

Why not make that data available to independent researchers so that all prescribing, including NHS prescribing can be properly linked to outcomes? Put a ‘are you happy for your data to be used in research?’ question on the Balance app and let women opt in to the research if the research needs to be done identifiably linked to an NHS number to see those records, for example?

Louise Newson doing the research herself wouldn't work though would it? Seeing as she makes huge sums of money prescribing it the risk of bias would be huge surely?

I don't have a problem with over prescribing like this if it does appear to work for individuals as long as the risks are made very,very explicitly clear - the big problem is that we don't actually know the risks - so people need to know that they are basically guinea pigs and decide for themselves if that is a risk worth taking. If you are suicidal and it appears to work then it probably is.

Runaround50 · 02/04/2023 11:46

What is a high dose to some women, is nothing to others. It's all relative. What about women who have had a full hysterectomy? They surely would need a substantial dose of hormones to feel well?

The doses of oestrogen which are commonly prescribed, are no where near the amounts that women would make naturally.

The menopause is shite beyond belief and as another poster pointed out, women are now expected to work until late 60's and run tmr home blah blah. That's not sustainable if you are sleep depressed, in pain, sweating etc etc

Typical DM, causing trouble!

lljkk · 02/04/2023 11:54

I'm getting impression that in the August 2022 article, DM journos already had story about LN's clinic, but were cagey about saying so because of LN's legal actions. Now they are reprinting same story with further developments because their lawyers gave them green light.

LN should welcome transparency & scrutiny. If her clinic is free of wrong doing, that will become clear and if some women can safely have doses LN endorses, that should become clear too. If any clinics are giving unproven to be safe doses, that practice should stop.

I wonder what international practices are compared to the dosing regimes being discussed. One gets impression UK medicines market is tightly regulated but elsewhere people can get whatever they demand. Whether or not it's in their own best interest.

lljkk · 02/04/2023 11:54

I'm getting impression that in the August 2022 article, DM journos already had story about LN's clinic, but were cagey about saying so because of LN's legal actions. Now they are reprinting same story with further developments because their lawyers gave them green light.

LN should welcome transparency & scrutiny. If her clinic is free of wrong doing, that will become clear and if some women can safely have doses LN endorses, that should become clear too. If any clinics are giving unproven to be safe doses, that practice should stop.

I wonder what international practices are compared to the dosing regimes being discussed. One gets impression UK medicines market is tightly regulated but elsewhere people can get whatever they demand. Whether or not it's in their own best interest.

OrangeKnot · 02/04/2023 13:08

@Xrays I’m a patient of theirs too and my experience has not been a shiny one. I still feel utterly rubbish and I am a proper chunk of money down. I have a consult and then when I have a follow-up question it’s another couple hundred quid. The cost would be irrelevant if I felt good, but I don’t. HRT not the magic I hoped for. Dr Jen Gunter is no fan of Newsom, and I don’t buy into the tall poppy syndrome that lots on this thread buy into. Admiring the clinic and actually using the clinic are very different things.

JinglingSpringbells · 02/04/2023 13:24

On balance, I think LN has done a huge amount of good for women. I am sceptical as to why some women offer themselves up as case studies for these critical features (they are probably paid a nice fee) and I wonder what the Mail is trying to achieve? Put her out of business? Where do they want this story to go?

But maybe she's become a victim of her own success? There are dozens of Drs on her website now, to cope with demand, that's good, but it does mean that many of them are not consultants, but GPs trained in her way of working.

The fees are expensive, comparatively, and if women were to shop around they would find that consultant gynaecologists, not just meno-trained GPs, are the same fee.

But she's been a success as women can access a dr quickly and almost guarantee they will get HRT.

AnnaMagnani · 02/04/2023 13:47

I'm not surprised by this story and suspected it might come.

When I realised I would get my HRT privately I looked at the BMS page of specialists and there were loads to pick from - and yet on Mumsnet people were waiting months for a Newson appointment as if only they would do.

In my appointment my specialist went through her training, how she kept up to date and 'didn't do Newson'.

I took it as a hint that Newson was controversial in menopause circles and felt I'd made the right decision.

wonderwhywoman · 02/04/2023 14:02

This is exactly what happened to me - I am now under a gynaecologist that treats me for HRT. She was absolutely horrified that I was on 200 mcg of Oestrogen and couldn't understand why Newson Health would have put me on such a high dose. I have spent thousands with them - I was a private patient of Louise's before she started Newson Health and was always a great supporter of her and all her work. Very sad as she has done so much for menopausal women.

wonderwhywoman · 02/04/2023 14:10

@Xrays Snap! My GP actually called me in to see them when they discovered LN had put me on 200 mcg of Oestrogen and warned me strongly that it was far too high. Having been bleeding I was told to have the transvaginal scan at Newson Health which I did do - thankfully they found nothing but yet again a big chunk of money spent. After losing faith at no after care from Newson Health I went privately to a gynaecologist who again was horrified at the level I was on and put me down to 100 mcg (now down to 50 mcg) and touch wood I'm fine. My gynaecologist is also not a fan of LN.

AnnaMagnani · 02/04/2023 14:13

Forgot to mention that my specialist (also not a consultant, didn't bother me as she has all the relevant training) costs less than half a Newson appointment.

wonderwhywoman · 02/04/2023 14:18

I also forgot to say that having started to bleed on 100 mcg Oestrogen and 1 tablet of Utrogestan and getting a clear result from my transvaginal scan, Newson Health DOUBLED my Oestrogen to 200 mcg and 1 tablet of Utrogestan which made the bleeding worse! I personally am really grateful to Paula Rastrick who has brought this out into the public domain. I wish I had done so too at the time. Thank God I now have an HRT specialist who knows what they're doing.

KnittingNeedles · 02/04/2023 14:39

You only need to read this forum for a week to see that so many women are getting extremely poor advice from their GPs about menopause. My story is not unusual - hysterectomy (kept my ovaries) at 46, looking back was in menopause 18-24 months after that, two visits to (female, middle-aged) GPs who prescribed anti-depressants, another visit to a male, younger GP who prescribed folic acid (wtf?) and it took a lot of reading and programmes by people like Davina McColl for the penny to drop. Getting HRT should not be a battle - but it is. Getting your GP to join the dots and realise your anxiety, repeated UTIs, lack of libido and however many other symptoms is menopause shouldn't be a battle - but it is. Getting your GP to swap you from patches to gel, or between two brands of patch shouldn't be a battle - but it is.

Then someone like Newsom comes along and says loud and clear - I hear you. I understand you, I know what you're going through.

All women are different. Some might be fine and dandy on a 25 mcg patch or one pump of gel only. Others need more. Newson's USP is that she offers a bespoke service and will prescribe based on a woman;s needs and symptoms rather than what some guidelines happen to say. I know of women who are on 150 mcg oestrogen a day prescribed through a different private doctor, and are very happy.

Some GPs really, really don't like having it pointed out that they are offering many of their female patients an utterly shit service, do they?

sunshinesupermum · 02/04/2023 14:55

My dosage prescribed by NHS menopause clinic is 6 squirts as a maximum dose. I've been taking HRT in one form or another for well over 20 years and stopped for an 18 month period only due to GP concern over breast cancer. I demanded to go back on after bone density scans showed osteoporosis in my hip. My latest BDS showed improved bone density.

PortiaWithNoBreaks · 02/04/2023 15:00

I see a consultant gynaecologist menopause specialist privately. She’s amazing and a half hour in person appointment costs less than one a NH. I pay £190.

norkmonster · 02/04/2023 15:23

Gulp! Am panicking now, having read the article. My mum died from breast cancer just before Christmas. I’m a patient of the clinic and am on 200 mcg oestrogen and 300 mg utrogestan 2 weeks out of 4. My symptoms are complicated by me suffering from long covid, so it’s hard to know what is long covid related and what is peri-menopause related (symptoms of which I think have been triggered by covid). Am now thinking I should be reducing my oestrogen down to at least half…

Moredarkchocolateplease · 02/04/2023 15:43

@norkmonster but you are also taking more than the usual utrogestan dose which is 200mg so it should balance you out?

norkmonster · 02/04/2023 15:53

@moredarkchocolateplease Not double the progesterone dose though - and tbh womb cancer worries me more than chances of breast cancer (less likely to detect it early). I have an appointment at the end of the month so will ask then what the advice is. I don't want to increase progesterone unless needed as I'm struggling physically and mentally anyway and don't want to add anything else into the mix.

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