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[Tabitha73]

I watched the Panorama programme with a lot of interest. I was a patient of John Studd in the 1990s when I was in my 30s and was amenorrhoeic due to being underweight. He prescribed me high doses of oestradiol (initially implants then later 200 mg patches) with Norethisterone as a progestogen. I developed atypical endometrial hyperplasia and had to have extensive high dose progestogen treatment and a Mirena IUS to try to rid me of the hyperplasia. I’m now 60 and possibly facing a hysterectomy given that I’ve struggled with endometrial hyperplasia ever since. I’m still on HRT (Estraderm MX50 and Mirena).

[CLKD]

Who will agree to on-going Research  is there any incentives to the drugs companies to fund Research?

It's about time that women were listened to.  It's about time that the BMS began advertising Conferences for medics and women to attend, not just in London but around the UK.  Not just in Cities but in the villages too.  Educating Nurse Practitioners who could hold discussion Clinics ......... with Minutes taken and published.

The BMS don't seem to be present on MM 

[CLKD]

Agreed - I've been fortunate in not requiring anything other than VA treatment.  I do wonder whether it's because I have been taking anti-depressant medication since 1988 as well as anti-anxiety assistance in various forms when necessary: so any peri-anxiety may have been better controlled?

[Penguin]

Agreed - I've been fortunate in not requiring anything other than VA treatment.  I do wonder whether it's because I have been taking anti-depressant medication since 1988 as well as anti-anxiety assistance in various forms when necessary: so any peri-anxiety may have been better controlled?

I wonder the same. I started hrt because of peri symptoms, quit after 14 months due to too many fluctuations, my E jept spiking and i just couldn't tolerate tge utrogestan. At the same time as quitting, I started an AD called fluoxetine (aka prozac), been on that since May and pretty much zero meno symptoms returned aside from a bit dry down below. Zero hot flushes at all and I'm sleeping really well too. It's weird. Good but weird.

[wenbird75]

Dear Gilla 999!

I couldn't agree with you more!!!
I've been thinking about posting about my own experience with crazy perimenopausal hormone fluctuations for a while now.

I am 49 years old and my periods are every 22 days, very light and last only 2-3 days.
I have been struggling with night sweats, chronic insomnia, and very loud tinnitus for 1 year now.
This spring, I felt anxiety for the first time, which made me unable to function anymore, so I quit my job.

My gynecologist prescribed me HRT lanzetto spray 2 pumps and utrogestran 200mg for 12 days in the evening during the second part of the cycle. My levels of estrogen at the start of therapy was 16 pmol/L, progesterone 0.3 pmol/L, FSH 53.

After 1 month my symptoms only got worse. The gynecologist then advised me to increase the spray to 3 pumps. After 3 weeks, the symptoms continued to worsen. Then she advised me 4 pumps. My condition worsened to the point where I was getting absolutely no sleep and my anxiety was through the roof, mood swing  horrible! Even the night sweats were back and tinnitus worsened.

Then the gynecologist changed my therapy to trisequence tablets, but did not inform me about the possibility of progesterone intolerance. Within 1 week I became so depressed that I even thought about suicide.
I stopped everything and decided, even though it cost me a small fortune, to monitor my  hormones in a private clinic for a whole month according to the phases of the menstrual cycle.
Hormone monitoring was performed 1 month after stopping HRT.

I was shocked at how hormones fluctuated from one extreme to another.
At one point estrogen levels was 475 pmol/L, then 122, then 48, then 68, then 178. Progesterone fluctuated from 0.3 pmol/L to 7.2, FSH from 53 to 7.2, then 22 to 8.3.

I realized that as long as I am in perimenopause, when my hormones fluctuate to such extremes, I will not be successful with any HRT therapy.
I'm sure that experimenting with HRT would be torture for me at this point.

What I want to emphasize is that there is not enough talk and research about HRT during perimenopause, when hormones are in constant chaos and, unfortunately, for some women, the increase in estrogen does not help. For me it was horrible experience!

Please take my writing as my personal experience, because I do not want to convince anyone that HRT is bad or not to try it.
In my opinion, it is necessary to help women in perimenopause in a different way or with a different approach, which all specialists dealing with menopause should first discuss and decide which is the right way.

I wish all the ladies who are in peri to menopause all the best!

Hi I turned 49 on Sunday and my experience has been very similar to yours. I have started with very terrible insomnia, as well as as many perimenopause symptoms over the last year.  The estrogen patch seemed to help at first, but got worse and worse to the point where I was barely sleeping at all..   I am praying to God that I get through the perimenopause time quickly so hopefully my hormone levels will even out after that. I have always been very high energy and high functioning and some days I feel like I can barely do a thing because I have had so many sleepless nights.   It’s so frustrating because I have always slept very well previous to this. I do hope there is some light at the end of this tunnel.

[Ayesha]

The fallout from the documentary continues. Today I received an email from a website called 'Rock The Menopause', a website recommended by my surgery practice nurse.
It asked if I would fill out a survey on the Panorama programme which I did and gave my thoughts, I used a lot of the words from this thread on how I and others felt it portrayed Louise Newson.

 

[TheMidnightSkulker]

For LN to be castigated like this is just public lynching by the mob.

As someone currently on over 3x the max licensed dose (doing better than I have in the last 4 years), I now live in fear of my NHS GP refusing to prescribe what the Newson Clinic letter recommends

I am not in a position to know whether LN should or shouldn't have been kicked off the BMS, nor whether the BMS guidelines are unreasonably conservative.

However, one would hope that GPs can tell the difference between Panorama and a medical journal. If your GP is treating Panorama as an authoritative source, you're in much bigger trouble than you realize, and HRT is the least of your problems.

[somewhere out there, a GP is writing "watched Panorama" under "continuing professional development". they are writing it in crayon. they are sticking their tongue out while they write.]

While having accreditation stripped by the BMS must be very damaging to LN's credibility - she hasn't been struck off. She's still a doctor. Other doctors watching this episode will have put themselves in LN's shoes.

[joziel]

My GP previously wouldn't (couldn't?) prescribe above licensed dose without a letter from a menopause clinic (either NHS or private).

So if LN is discredited as a result of this programme, it's going to have an impact. I can ask for a referral to an NHS clinic but that will probably take years and there's no guarantee whoever I see is going to agree to high doses either.

[Dandelion]

The BMS and NHS are very quick to say 'there is no evidence for...'. Usually there is no evidence against either, the research simply hasn't been done and isn't likely to be either.

Perhaps someone whispered in their ear that the hrt bill is getting too big a new scare story was needed to reduce it.

Cynical? Moi??

That sounds like something I’d say 🙂

[Dandelion]

This feels like it may be another WHI type watershed where treatment for many woman is adversely affected by what should be a discussion about a specific issue - ie off licence oestrogen. 

I am also a Newson patient,  forced to pay because my GP refused me HRT (in favour of AD's).   The GP has  taken on my prescription but refuses to prescribe at 75 rather than 50 despite me still being symptomatic at 50.

I'm now paying again to try testosterone as GP regards T inside the reference range (0.101 upwards)  as being OK, again despite me being symptomatic in line with the nice guidelines. 

This is another pop at LN after the "how dare she prescribe T" guff from a couple of months ago.

I really fear this noise is going to make it even harder for woman to access HRT going forward as it creates confusion in already under informed HP's.

75mcg is within the licenced prescription, why does your GP refuse to go over 50?

She listed an additional risk of blood clots and that I wouldn't be able to stay on it very long.    All incorrect but she wasn't having any of it.

I took the success of her taking on the prescription and I'm going back to see another GP.    Baby steps

It's hard work and it wastes appointments

I might be wrong but it sounds like she is out-of-date.
Best of luck with your GP.

[TheMidnightSkulker]

My GP previously wouldn't (couldn't?) prescribe above licensed dose without a letter from a menopause clinic (either NHS or private).

So if LN is discredited as a result of this programme, it's going to have an impact.

But she's lost her accreditation to the BMS, so she has been discredited (assuming BMS accreditation is essential for a menopause specialist, maybe it isn't). And it happened before this programme was released, therefore it can't have been as a result of this programme.

I can ask for a referral to an NHS clinic but that will probably take years and there's no guarantee whoever I see is going to agree to high doses either.

If you're a patient of one of LN's clinics, then her loss of accreditation is definitely going to be a blocker for you, because it makes her an example to other specialists that you otherwise could have turned to. But Panorama didn't remove LN's accreditation, because they don't have that kind of power. The BMS does. So the BMS would be the ones to challenge over this, because it would be their guidelines that are standing between you and your treatment.

What Panorama does have the power to do is scare people off treatment, and evidently they know this, because according to other posters here, they put up a sign like "don't just stop your treatment, teehee!" So Panorama are the ones to challenge over mis/disinformation, because they are the ones scaring people off treatment. Realistically, the best outcome might be a mumbled one-paragraph apology published in some obscure place. But imagine some dream outcome whereby Panorama puts out another program consisting entirely of apologies and debunking this specific episode, and they publicize it widely and aggressively, and everybody who got misled by the original episode changes their minds. That would be awesome. But it still wouldn't get LN her accreditation back, nor would it change the BMS guidelines.

[CeCe]

I was a patient of Newson Health and my experience was the complete opposite of the Panorama programme. I was prescribed progesterone only. No oestrogen at all. After 2 years they tried to introduce oestrogen starting with half a 25mg patch but I still couldn’t tolerate it, so continued on with progesterone only.

If I have any criticism of them it’s that I did feel they tried to push testosterone at every appointment.

However I can’t fault my treatment at all. Wherever I was in the World, they replied to my emails and questions (no charge)and at my last appointment they suggested stopping HRT to see where I am and only get back to them if I felt I needed to. I actually feel much much better without HRT so I don’t need to go back.

I was really sad to see and read that some people have the opinion Newsons are pushing high doses of oestrogen. That wasn’t my experience or the experience of friends I referred there when the NHS were failing them. Also, at no time did they suggest HRT would provide long term health benefits to persuade me to keep taking it. They really didn’t push it all. They focused on my needs only.

I hope the programme hasn’t put anyone off seeking their help if they need it. I couldn’t recommend them more highly.

[joziel]

I think you're giving the BMS way too much power in all this. It's just a charity bringing together doctors who specialise in the menopause and offering education and training - and membership.

It's not a requirement to belong to the BMS - and neither, in my eyes, is it a marker of a 'good' menopause doctor necessarily, at all. Just as, in the US, there are 'NAMS' (North American Menopause Society) doctors still prescribing oral estrogen and 'shortest dose for shortest time' stuff. Just because an organisation exists and proclaims itself THE definitive organisation for something, doesn't make it into that.

I don't have much time for the BMS because I've seen a BMS certified menopause doctor before the Newson Clinic who had all kinds of crap information, told me I couldn't have local estrogen AND systemic HRT. Told me I couldn't have 2 types of local estrogen (Vagifem internally and Ovestin externally) and she'd 'never heard' of that before. Expressed surprise that I'd just come off the pill and could feel twinges and sharp pains from my ovaries as a result ('but how do you feel your ovaries?') and so on.

So no.... Doctors have to prove themselves in conversation with me, that they know about the menopause. That they know more about it than me (which frankly is quite a lot, by this point) and that they will work with me and not just exercise power and tell me what to do. I don't really give even a tiny little sh*t about whether they are a member of the BMS, which is an organisation which until a few years ago thought the WHI was THE BOMB and has had to be dragged screaming out of conservative-land and into modern menopause care - embarrassingly by people like Louise Newson and Davina. They then looked incredibly behind with things and now are on a vendetta as a result. It's like we're still in the school playground.

Every time I see someone write 'but LN has lost her BMS accreditation' as if it therefore proves she's some kind of quack, I'm like... what...? What did you really think the BMS is?? She hasn't lost her licence to practise medicine.

So no, she hasn't been 'discredited' officially at all. And, even if - in the eyes of my GP - she has, that (as you say) happened last year. But doctors are easily influenced (sadly) and making a song and a dance about it via Panorama can easily lead to them suddenly deciding this is a very bad thing, having not cared about it before.

[ElkWarning]

There's very roughly the same number of women over the age of 45 in England as there are children under the age of 18.

It's a national outrage that we don't have something like a menopause tsar (instead of some crappy employment champion or hrt supply investigator because this is too ad-hoc and piecemeal). Can you imagine if we didn't bother to have a robust approach to education or work and pensions? Women once again getting the mucky end of the stick, being told they're not important enough, even though, for example, evidence shows that post-45 women are far more at risk from mental health issues, especially those leading to suicide.

And in the meantime, on the side, we've got rank profiteering and celebrity status advocates. It's not helping.

Panorama or not, what this highlights is a Russian Roulette system of supposed healthcare that affects millions.

We need properly funded research and resources. Anything else is just bizarre tinkering.

[Fizwhizz]

I’ve just had an interesting private consultation for thyroid and meno. My 25mcg estradot patch wasn’t sticking well and I ditched it for a week because of spotting but my bloods are showing my blood oestrogen level is 18 and I have no testosterone. Potentially I’m a poor absorber of patches BUT the GP was able to listen to my symptoms AND cross reference with my blood tests it’s expensive though. It’s not necessarily just menopause causing issues women need a much better holistic health assessment service. Anyhow at least I now know why I feel so rubbish. I have no sex hormones whatsoever although this is exactly what mother nature intended the menopause to do….🙈