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[Gnatty]

Yes in the white paper I mentioned above Nick Panay discusses this very thing. Benefits can be obtained for bones on a really low dose of oestrogen and adequate bone protection is seen with 1 to 2 pumps of oestrogel.

[CrispyChick]

Gilla - I was just reading this thread and thinking that very same thing!!!

I've previously read the research on POPs and bone health. It really doesn't make sense with the 300pmol a day thing, branded about on here. 

I know for example I feel hideous when my E is in the 300s and I have no progesterone. Yet when on the POP cerazette, to prevent ovulation and keep E levels steadily low, at 200 I felt much better.

Having felt as bad as I have over the last 7 years due to either too high E, unbalanced E or simply peri E fluctuations - I will never take E for the sole purpose of preventing other illnesses. If E can make me feel ill to the extent of has, I don't believe for one minute it is healthy for me.

But that's the crux of the matter. Everyone is very very different. Some need more E than others. Some get side affects from E, some don't. Some absorb HRT, some don't.

Surely the point of all this is that woman need options. Private clinics deliver those where the NHS is failing us. But - if those private clinics are a one way track of only prescribing the same doses to everyone - that's not good either.

I've personally used the marion Gluck clinic, because, i don't need extra E and, at the time I was aware the LN clinic would push E on me like the NHS do. But - someone has mentioned on this thread, and I've seen it mentioned elsewhere, that Newson are now supporting prog only therapy. Or at least one doc is.

Times change, knowledge is spreading. But ultimately we are being failed. How can the NHS think I need E, but the Marion Gluck clinic think I only need prog. Why have I had to resort to American Facebook groups for help???

Never mind taking down the 'opposition' through a BBC documentary, how about all working together to research and improve knowledge for us poor woman!!!

[dangermouse]

I had always assumed that the high oestrogen dosing was about suppressing natural hormone volatility, like the combined pill. It possibly explains why some on very high dose have low levels when tested which makes them assume it’s an absorption issue. Receptors can down regulate when they are saturated. I guess it’s safe with the pill though as they always had sufficient amounts of progestogens and, prior to peri, we have tonnes of our own progesterone.

Also, as oestrogen is a growth hormone, surely that can kick off overgrowth of cells all over the body, not just the womb, hence the need to control it with progesterone even without a womb?

[Gilla999]

It is definitely one possibility Dangermouse, but I do personally believe that high and low absorption really are A Thing. I use 1/4 of a 25 Evorel patch and I know from experiments/tests I've done that I get about 200 pmol from that, which is WAY over the average absorption. Some people say to me "that isn't possible" in the same way it's said that it's "not possible" that some women need very high doses. Just as the NICE guidelines are possibly too strict about higher doses being needed, there is also not enough options out there for those of us who need very small doses of things to feel well and cannot tolerate higher.

Crispy you're spot on - the crux of the matter is variability and everyone is very different. You have to have some sympathy with menopause specialists who are trying their best to navigate that. I  just wish there was more research being done into these differences and variabilities

[Gnatty]

It's so complicated Danger mouse. I see what you are saying but then how does that relate to women taking oestrogen only ( those of us who have no womb ) having a significant lower incidence of breast cancer?

[CrispyChick]

It is hard to have sympathy though Gilla.

I'm now under a gynae who specialises in meno. she is BMS and, as a result of that, can't see outside the set parameters.

An example is me suggesting low dose E could be trialled via one of the vag estrogens available. Now, I know she'll let me, if I want to. But...I was told categorically there is absolutely no systemic absorption. Yet anecdotedly on this forum there are plenty of woman feel systemic affects.

I just don't get why they are so blinkered.

I think that's it for me. I now guide my treatment but in doing so, I have to find experts that will let me try unconventional approaches and I have to manage how I engineer that and what I divulge. All very tiresome and consuming. 

It's really opened my eyes to the whole medical system and how I'd have happily trotted along and believed everything I was told - before!!!

[CLKD]

tamoxifen as my "estrogen" in that instance.. I was given this drug to lower oestrogen production having had breast treatment.  The lump was found at histology to have 'changes in the margins'.  The drug almost killed me  and as it was on an 'in case' basis I stopped after 3/4 months.  My sense of smell became acute: DH had made a Dundee cake and I could smell the tablespoonful of cold water every time I passed the pantry door: which was shut, the cake was in a tin with the lid on. 

My friend died of womb cancer due to this drug.  Both under the same Consultant Surgeon who told me and DH that 'none of my patients have developed womb cancer'.   . I didn't think to check any treatment as I went along .........

Medication is a minefield anyway, what suits some patients won't help others.  Any1 read the letters pages in the Telegraph etc.?

[Nas]

I was given tamoxifen after my primary BC to inhibit oestrogen production. Nasty drug it was too. Letrozole is worse! All a minefield and hideously stressful to navigate in the shit show of menopause and cancer.

Oh and if anyone has any brain fog remedies, please do share
( not testosterone).

Thanks 🙏

[Gnatty]

For me the best thing better than any hrt is exercise, as in cardio. My favourite being crazy Zumba classes x

[CLKD]

Tnx Nas U R the 1st woman to seem to have been badly affected by the drug. 

Gnatty - that sounds like hard work 

[Kathleen]

Hello again ladies.

Regarding Tamoxifen I read that medics agreed that this was a difficult drug for many women to tolerate but they thought that their patients were taking it as directed.
 A researcher decided to put this assumption to the test and looked at the number of repeat prescription requests that patients were submitting.  It turned out that a large proportion of women simply stopped taking the drug and therefore didn't need to ask for the next months supply. The doctors were unaware of this believing that the women were doing as they were told but evidently they were not!
I suppose if a treatment is intolerable it will be  discarded, no matter the proposed future benefits.

Take care ladies and wishing you all well.

K.

[Nas]

That’s exactly it Kathleen. Sometimes one has to prioritise quality of life over quantity.

I did take tamoxifen for the required ( then) 5 years. That along with a radical mastectomy and chemotherapy, may or may not have contributed to giving me 14 years, before it metastasised.

The body is complex and we do what we think is right at the time.

[joziel]

I think this thread is getting a bit off subject 

The fact is, whatever you think of HRT generally, we are all different and some of us need it - and need high doses of it. 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 - and then having to buy this privately. I would end up trying to get the max licensed dose from my GP (and the progesterone) and just topping up from Newson - but this would involve deceiving my GP somewhat as I'm not sure they would want me to be doing that or that they would continue to prescribe if they knew I was.

I don't think I could afford to buy my entire HRT prescription privately on this dosage. So that would be me f*cked. I've only just started to be able to sleep a reasonable amount and to get any deep sleep at all, on this dosage. I have no unscheduled bleeding, no sore boobs or high E symptoms - and when I stop my P each month for 5 days, it is a very light bleed. I will do bloods in a few weeks but, unless they are over 800pmol, I don't see a reason to reduce...

This is such a mess and it comes from under-funding women's health and a lack of research. We simply shouldn't be sitting here in 2024, going 'doh - is it safe to use this much estrogen? and how much progesterone do we need?'. The symptoms I'm experiencing are experienced by bazillions of women worldwide because I've found many online on Facebook and social media. Like me, they spend ages researching all kinds of other health conditions and getting sent from doctor to doctor - is it iron deficiency or restless leg? B12 deficiency? thyroid problems? low potassium? low calcium? low copper? is it hypnic jerks caused by some spinal issue? rheumatoid arthritis? FOR FOUR YEARS I have been bouncing around doctors with all this. For something which 50% of the population get... I now try to identify and rescue other women from this, so they stop going down rabbit holes of other conditions and trial some HRT. And this how it goes - women know more than doctors about it. Women tell other women and get there first. It's embarrassing for the medical profession. They should be ashamed (most of them) of their lack of knowledge. It is NOT okay. If they feel they are somehow losing control in response and there is some mass demand thing going on which is worrying them, the answer isn't to lynch LN - but to ask why it has reached this point...

SO - if they are going to be this behind, when the groundswell of women get with it and discover HRT and demand it - they had better be ready. They had better do the research. They had better have systems and protocols and guidelines which are not just hysterically conservative but which allow us to get all the benefits of it. Or there will be the absolute sh*t show mess and confusion which there currently is, society-wide, on a global scale....

[Ayesha]

Nas, I also don't take systemic HRT and I get annoyed by some posts here that insinuate if you don't take HRT you will suffer badly in old age with all sorts of diseases. HRT can cause lots of issues and can make life hell for some, its truly a minefield but for others it can be an easy ride and that's great.

I am still waiting for my body to fall apart as suggested on here it would without HRT but genetics will play a part and a healthy lifestyle is paramount if you want a good old age. Also just to mention, I don't know anyone else who takes systemic HRT and are all doing well in old age.

[Nas]

Ayesha, it certainly is a minefield, there’s no getting away from it. You are right, genetics and lifestyle are major factors; perhaps these need to be given more consideration. That said, we are all individual cases and one size doesn’t fit all. Hopefully our bodies won’t fail us any time soon! 

Some need no HRT, some a little and others much more and that’s where LN comes in I guess. I do remember when my own MS was prescribing HRT to me, she was absolutely of the opinion “ lowest dose for the least time possible” But how can that be right, when the lowest dose, doesn’t scratch the surface for some?

Let’s hope that those who need HRT, still continue to take it and without a fight.

Which ever way you look at it LN has had her name and credibility, dragged through the mud, leaving a right royal mess!