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Menopause

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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:
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?

ScooperPooper · 02/04/2023 08:10

I’m sceptical of every situation in which private doctors say that not enough research has been done and then simply continue to prescribe away despite that lack of research.

Im really pissed off about the lack of research because menopause affects half the population and for many women it’s debilitatingly shit yet we’re expected to continue working until we’re at least 67 and running our families and homes as normal while dealing with it all. I don’t assume that the current upper limits are unsafe or not, I’d they’re based on the limits of what has been researched then I just want them to be urgently researched.

If we’d wanted HRT 20 years ago we would have probably have been refused point blank because medical belief was of an increased cancer risk, which turned out to be disproven by research. So the current medical opinion of 100 mcg upper limit means little to me if it hasn’t been researched. It could be too low. It could be too high. We need to see what improves symptoms without causing long term harm. Let’s see the data.

Companyofwolves · 02/04/2023 08:41

I agree. I know she is conducting & has research going on esp in MH & menopause. This article feels very inflammatory & instead of suggesting it be a much needed area of further research for which funding is urgently required - it’s feels like a campaign to bring her down. It’s always trailblazers that this happens to. I just hope it doesn’t harm all the good that she’s done & get GP’s saying “see we knew all along we were right” as I’m sure they’re sick of the added workload in patients requesting HRT & therefore the subsequent monitoring & management that it entails when it’s so much easier for them to just chuck you on an antidepressant & leave you to it.

OP posts:
JinglingSpringbells · 02/04/2023 09:01

Wow!

This comes over as a witch-hunt, maybe taking a shot at a private clinic.

I have read it, and it seems typical Mail journalism.

There are quotes from unnamed sources and former employees. That isn't good enough.

It's also not good enough to include case studies of a few women without knowing their medical history. We have no idea if the doses were actually given or if they were 'embellished' for the feature.

I'd love to know how these women were found- did they have a grievance, approach the media, and that's why the Mail wrote this, or did the Mail put a shout-out on social media for case studies?

There are quotes from other doctors but the quotes are out of context; those drs are making a general comment yet their comments are being 'subtly' placed as if to criticise Dr Newson.

I hate articles like this because professionally, no dr can redress the balance and put their side over in public. It would become a slanging match.
The Mail is very close to being accused of libel.

There are some causes for concern about the guidance she wrote for GPs which needs updating.

The alternate day or half dose of Utrogestan (used vaginally) is only based on one single study (Swiss) and should not be promoted as being suitable for all women, especially women on a high dose of estrogen (100mcg patch or 4+pumps gel). It may be suitable for some, with on going monitoring. But there have been many instances of posters here, suggesting that dose to other women, but they are forgetting that this regime was initially done with caution, for women who have easy access to private scans.

I wonder if Dr Newson will take legal advice as the article is sailing close to the wind.

JinglingSpringbells · 02/04/2023 09:06

One patient who had spent more than a year on a high dose of oestrogen – one of the hormones given in HRT – was diagnosed with womb cancer, while others developed endometrial hyperplasia – changes to the womb lining which can be a precursor to cancer. It is not known whether these diagnoses are linked to the drugs they were taking;

This is what I mean. The writer gives themselves a legal cop-out by saying they don't know if the diagnoses were linked to the drugs.

But they build up the idea they could be. One anonymous woman who may have had other risk factors for endo cancer- being overweight or smoking.

paperfarm · 02/04/2023 09:16

Surely this was inevitable. You prescribe off-licence and out of national guidance doses to a large number of women. It's inevitable some will get endometrial ca on a population risk basis. Oestrogen is known to have dose dependent effect on cancer risk. Women get upset that you've exposed them to risk that they never understood. What the hell was she thinking?

Snowontheblow · 02/04/2023 09:20

What is viewed as a "high dose"?

ScooperPooper · 02/04/2023 09:23

I’m sure Dr Newson is millions wealthy enough having built her brand to defend her reputation legally if this is in fact unfair reporting.

I really think the focus should be kept on accelerating high quality research in order to settle these questions. And it can’t be denied that if Newson clinics are prescribing higher than the NHS will allow then they need to be the focus of this research in the UK because they have this data.

A lawsuit about a critical media article about contestable dosage is obviously a reasonable approach to protecting a personal business brand. Doesn’t actually help patients, in the way that providing clearer medical evidence would though.

JinglingSpringbells · 02/04/2023 09:26

I have no idea if Dr Newson has had a hysterectomy as the article says! I don't think they ought to be sharing her medical details unless it's already in the public domain. Is it? It says she is on a huge dose of estrogen now as she had a hysterectomy as she was progesterone intolerant. I thought I'd read/watched her ages ago that she took daily Utrogestan.

Xrays · 02/04/2023 09:28

Snowontheblow · 02/04/2023 09:20

What is viewed as a "high dose"?

There’s a mention of 8 pumps of oestrogel. The standard dose is 2, up to 4 is relatively normal. 8 is very high.

I am on the fence about this. I think she’s done amazing work. But as a former patient of Newson myself I’ve not had the best treatment. They kept upping my dose of Oestrogel and I just wasn’t convinced they really understood my complex medical needs in relation to the HRT I was taking. I ended up coming off it completely after losing faith in them - long story- and waited to see an nhs menopause specialist where I restarted the HRT but with a lot more scans and tests which I did need as I have all sorts of other issues including pituitary tumour issues which Newson health really didn’t understand. They just wanted to keep increasing my dose and I just felt really unsupported. Then every few months they’d want me to have a 5 min telephone call follow up appointment for which I got charged £200.

Oblomov23 · 02/04/2023 09:31

This does look like nasty writing, scaremongering. However the dosages listed, if true, are worryingly high. One had patches and 6 pumps. One had 8 pumps. And not enough progesterone to balance. That's not good.

Snowontheblow · 02/04/2023 09:37

Thanks, @Xrays

JinglingSpringbells · 02/04/2023 09:40

@ScooperPooper Notice how the words 'allegedly' are included and also all those unnamed sources.

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.

There is a lot of research already on estrogen-only hrt in women with a womb as this was how HRT was once prescribed decades ago, mainly in the US.

Greensleevevssnotnose · 02/04/2023 09:40

Snowontheblow · 02/04/2023 09:20

What is viewed as a "high dose"?

It says 200mcg of oestrogen, I am on 75 at the minute with my next prescription being for 100. So anecdotally it sounds high but I know people on 200mcg of Setraline when my dose was only ever 50. We aren't doctors and don't have the knowledge to say if it unreasonable or not.

Moredarkchocolateplease · 02/04/2023 09:42

@JinglingSpringbells yes she talks about her hysterectomy on her podcast quite a lot.

BatshitCrazyWoman · 02/04/2023 09:43

The Daily Fail are always going to have an angle on this. Women hating misogynists. How dare women not just suffer.

But I also think there needs to be a lot more research into HRT generally because a lot of it very out-of-date. I was originally prescribed HRT by the Newson Clinic, just a very normal dose of 2 pumps of Oestrogel and progesterone for two weeks out of four. I get my testosterone from them because my GP won't prescribe it. I'm happy with my treatment and have no complaints 🤷‍♀️

Abra1t · 02/04/2023 09:45

I think there's definitely a story about Utrogestan in general. I was a Newson Patient, starting on two pumps of oestrogel and never going above three, for a few months only. Daily continuous Utrogestan, either orally or vaginally.

I still developed bleeding, polyps and suspected atypical hyperplasia. The bleeding stopped when I had a Mirena, but I have had six, soon to be seven hysteroscopies and biopsies, with suspected atypical hyperplasia. They hope the next hysteroscopy will allow them to discharge me.

Is it that 'gold standard' Utrogestan simply doesn't work very well for a number of women? I was offered a Mirena by Newson in place of Utrogestan and wish I'd taken them up.

Companyofwolves · 02/04/2023 09:45

@JinglingSpringbells it does feel like a witch hunt & not a balanced piece at all. But she is going against medical mainstream practise. Looks like there will be repercussions.

I thought higher doses are often suggested if you’re not absorbing correctly as well.

I can’t believe that her patients aren’t informed or risks & that she’s prescribing off label. Certainly for those who’ve had breast cancer she advocates that HRT can be used - if quality of life is so impeded & the patient is fully aware of the risks & prepared to take them.

OP posts:
Greensleevevssnotnose · 02/04/2023 09:53

I have daily utrogestan prescribed as a pessary for dryness. But I became so wet I was told to cut it down to every other day. I also catheterised my bladder with it as the applicator is so sharp and was in agony for a month. Apparently a junior doctor would have been envious of my technique! Any way it seems to have righted itself, the dryness that I just use one every now and again and Evorel 75 currently. I will up it to 100 on my next batch as my energy levels are still low. I declined testosterone as she told me there are not enough clinical studies to its efficacy but anecdotes told her it would help.

Abra1t · 02/04/2023 09:58

Is that utrogestan for progesterone, though, or a vaginal oestrogen?

Companyofwolves · 02/04/2023 09:59

@Abra1t forgive my ignorance - are you saying the mirena coil may have prevented the atypical hyperplasia?

It’s all very confusing. Which is why funded research programmes are sorely needed!

I’ve always thought that gold standard care would be endometrial scans prior during & at intervals throughout taking HRT so as to be able to monitor any risks, changes etc. Obviously it’s not affordable for most of us or feasible in the NHS for all. So bleeding has become the main indicator of things being amiss. Perhaps Newson should only be increasing dosages over recommended limits in the presence of a healthy scan?

Clearly I’m no doctor!

OP posts:
Abra1t · 02/04/2023 10:04

Companyofwolves · 02/04/2023 09:59

@Abra1t forgive my ignorance - are you saying the mirena coil may have prevented the atypical hyperplasia?

It’s all very confusing. Which is why funded research programmes are sorely needed!

I’ve always thought that gold standard care would be endometrial scans prior during & at intervals throughout taking HRT so as to be able to monitor any risks, changes etc. Obviously it’s not affordable for most of us or feasible in the NHS for all. So bleeding has become the main indicator of things being amiss. Perhaps Newson should only be increasing dosages over recommended limits in the presence of a healthy scan?

Clearly I’m no doctor!

Yes, I'm wondering whether, in my case, a Mirena might have prevented the hyperplasia. Newson offered me the choice of having one inserted. And, as I said, I was never on high-dose oestrogen anyway, so I don't want to derail the thread.

I just wonder whether Utrogestan works on all of us. It's frustrating that progesterone seems to be the weak link in HRT for some of us. Though I have been happy on the Mirena.

Companyofwolves · 02/04/2023 10:04

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

OP posts:
JinglingSpringbells · 02/04/2023 10:05

Abra1t · 02/04/2023 09:45

I think there's definitely a story about Utrogestan in general. I was a Newson Patient, starting on two pumps of oestrogel and never going above three, for a few months only. Daily continuous Utrogestan, either orally or vaginally.

I still developed bleeding, polyps and suspected atypical hyperplasia. The bleeding stopped when I had a Mirena, but I have had six, soon to be seven hysteroscopies and biopsies, with suspected atypical hyperplasia. They hope the next hysteroscopy will allow them to discharge me.

Is it that 'gold standard' Utrogestan simply doesn't work very well for a number of women? I was offered a Mirena by Newson in place of Utrogestan and wish I'd taken them up.

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!

Xrays · 02/04/2023 10:05

The bleeding thing is one of the issues I had. Newson kept saying it would settle down and was a sign I wasn’t taking enough oestrogen. Their next step is to offer an internal scan to assess the lining of the womb. If this is normal they will tell you to increase the dose of oestrogen further. As I said this is a very long and complex story for me but after ceasing my relationship with them and going back under the nhs I have had several scans with them (nhs) and I’m currently waiting to have a biopsy done. I have been told that without a biopsy they cannot be sure there isn’t a cancer of the womb; even if the lining scan comes back clear. So Newsons health approach which seems to rely purely on a scan of the lining may be doing a disservice to a lot of women in the long term especially coupled with the higher doses they recommend. (I should add I am a very young woman in terms of menopause- I went into early menopause aged 37 due to autoimmune issues and I’m now aged 42).