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Author Topic: What Do You Wish You Had Known?  (Read 3148 times)

CLKD

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Re: What Do You Wish You Had Known?
« Reply #15 on: July 22, 2022, 07:26:12 PM »

As well as telling every young girl to exercise well, eat plenty of dairy and enjoy Life.  When she gets to her 20s, she needs to be aware of The Change !
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joziel

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Re: What Do You Wish You Had Known?
« Reply #16 on: July 22, 2022, 08:16:17 PM »

I'd say that the 300pmol thing depends on who you ask. There are many research papers (and so, doctors) who say that any amount of estrogen, even a low dose, is protective. There are many who refuse to consider blood estrogen levels as relevant and advise you just to treat until symptoms go (including Dr Currie who is behind this forum). I guess if you maybe have a predisposition to get osteoporosis (but maybe don't know you have that predisposition) you probably want more - you can actually build bone at higher levels. Otherwise you can just maintain what you have. If you can tolerate estrogen to get up to 300, then that's great. But not everyone can...

Oh and that's another thing I wish I knew, that I shouldn't have assumed how much estrogen I'd be aiming for before I'd even started it. I thought I'd need a 75-100mcg patch. So I went whacking up through the patches heading in that direction - and hit huge estrogen sensitivity problems and had to come back down again to 37.5. I wish I'd taken it really really slowly and really gradually with increasing. But not all women are as sensitive as me, so not sure this advice is useful generally!
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margherita

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Re: What Do You Wish You Had Known?
« Reply #17 on: July 22, 2022, 10:13:03 PM »

I'd say that the 300pmol thing depends on who you ask. There are many research papers (and so, doctors) who say that any amount of estrogen, even a low dose, is protective. There are many who refuse to consider blood estrogen levels as relevant and advise you just to treat until symptoms go (including Dr Currie who is behind this forum). I guess if you maybe have a predisposition to get osteoporosis (but maybe don't know you have that predisposition) you probably want more - you can actually build bone at higher levels. Otherwise you can just maintain what you have. If you can tolerate estrogen to get up to 300, then that's great. But not everyone can...

One source I've come across time and again re the 300 pmol minimum recommendation is from Professor Studd, arguably this country's leading indeed pioneering HRT specialist who also trained Nick Panay who is his de facto successor and not only them. And up to 800 pmol for anyone with hormonal depression according to their research.
Versus the official guidance on this site, both the information pages and the email consults (I don't mean the forum) which I find really retrograde: to cite just a couple of examples, saying that testosterone is only to be used for libido otherwise why bother (ie it has no connection with cognition, bone density, energy, mood etc), or that agnus castus can't be taken if on HRT, or that vaginal utrogestan needs to be taken as often as oral on conti rather than on alternate days.
I know whose guidelines I'd follow between the two though of course I realise that not everyone can tolerate higher doses of estrogen to up their plasma levels.
I haven't come across any of the research papers you mention that say any amount is protective - can you point me in the right direction?
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Kat36

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Re: What Do You Wish You Had Known?
« Reply #18 on: July 22, 2022, 10:16:48 PM »

Hi there, my ovaries went to sleep at age 36. I’m can sympathise & I’m so sorry you’re going through this.  It’s a  heartbreaking diagnosis.  I met the man of my dreams just as all this was happening & was robbed of having my own children with him(we are both childless).
I wish I had known more about hormones in general and how they work.  I wish I pushed my Drs more on things and that I had contacted a specialist sooner.  A string of GPs poo-pooed my concerns for soooo long in such an appalling manner.  In fact, my GPs continue to show their incompetence when dealing with POI. I bypass them at any opportunity now as I don’t trust them to provide good care to me with this condition. 

I also wish I was more aware of VA (as many others have stated here) and started treatment for that sooner.  I had no idea that it was even a thing. I suffered unnecessarily for some time. 
I also wish I’d known that it wouldn’t be as simple as getting a hrt and all would be well in my world.  I wish someone had told me there’s a lot of trial and error involved for most women. 
Finally, be gentle with yourself. It’s ok to not be ok with this. Lean on your support network. Take care❤️.
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ange63

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Re: What Do You Wish You Had Known?
« Reply #19 on: July 23, 2022, 05:00:10 AM »

Wish I had known that you can go through peri and meno for years whilst thinking you are getting through to other side - not easy but getting through.  Then you can get hit by the lot later on.....  no one told me I could get worst symptoms ever 5 years post meno and at the age of 58!!!!   I wish I had known that you should educate yourself on what can happen and how you can best look after yourself to be prepared for it....  I had no female relatives to get information from so no one to talk to about it.    Wish I had thought about HRT sooner in my early meno years as it may have saved me a lot of the nightmare issues I have now - but I was coping ok till now so probably would not have felt I needed it.     
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Poppy61

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Re: What Do You Wish You Had Known?
« Reply #20 on: July 23, 2022, 05:40:18 AM »

Yes, wish I'd known I'd become worse post meno. Very confusing, as most information is aimed at peri meno women and therefore, completely complexed  as to what was happening to me.

Please don't be scared by these accounts. Just take note, take good care of yourself and learn from all of our mistakes and lack of awareness. Knowledge is power! I'm hoping that for my nieces and great nieces, menopause won't even be much of an issue, as we will have laid all the groundwork for them and I'm sure there will be greater advances made with regard to treatments. X
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joziel

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Re: What Do You Wish You Had Known?
« Reply #21 on: July 23, 2022, 10:18:19 AM »


I haven't come across any of the research papers you mention that say any amount is protective - can you point me in the right direction?

Here:

https://www.webmd.com/osteoporosis/news/20040504/ultra-low-dose-estrogen-patch-helps-bones

"The study enrolled more than 400 postmenopausal women aged 60 to 80. All had thinning bones and were at higher risk of having a spine and/or hip fracture -- as indicated by bone mineral density tests. The women also had blood tests to look for markers of increased bone turnover.....Researcher Bruce Ettinger, MD, of Kaiser Permanente in Oakland, Calif., tells WebMD that the ultra-low dose patch significantly increases bone density in the spine and at the hip.

"The dose in the patch is only about "one-fourth the traditional 0.625-milligram dose" contained in most estrogen pills used in menopausal hormone therapy,""... The study results are good news says Nahum. He tells WebMD that the new study confirms something that he and other obstetrician/gynecologists have long suspected: "A little bit of estrogen goes a long way."

The patch which they made is now on the market and is called Menostar. It is just 14mcg of estrogen: https://www.rxlist.com/menostar-drug.htm#indications  I think I'm right in saying that it actually doesn't need any progesterone to oppose it because the estrogen is so low, but don't quote me on that - I read it in one of the research papers.

And here:

https://pubmed.ncbi.nlm.nih.gov/16607111/

And here:

https://www.uptodate.com/contents/menopausal-hormone-therapy-in-the-prevention-and-treatment-of-osteoporosis

"Women who seek MHT for menopausal symptoms in their late 40s or early 50s will have the additional benefit of a reduced risk of bone loss and fracture [3,4]. In such women, a separate first-line drug for prevention or treatment of osteoporosis is usually not required with estrogen (estradiol) doses equivalent to or higher than 25 mcg/day of transdermal or 0.5 mg/day oral. Lower doses of transdermal estradiol (14 mcg) have also been shown to have skeletal benefits. With this ultra-low dose of transdermal estrogen, bone density should be monitored in women at high risk for osteoporosis and fracture as another agent (eg, a bisphosphonate) may be needed."

And here: https://academic.oup.com/jcem/article/85/12/4462/2852143

"The purpose of this study was to examine the effects of three doses (0.25, 0.5, and 1.0 mg/day) of micronized 17β-estradiol on bone turnover, sex hormone levels, and side effects compared with placebo in healthy older women...All markers of bone resorption significantly decreased at 12 weeks on treatment compared with placebo and returned toward baseline at 12 weeks posttreatment. ... Based on equivalence testing, the response of markers of bone turnover to therapy with 0.25 mg/day was similar to that seen with 1.0 mg/day.... We conclude that low dose of estrogen (0.25 mg/day 17β-estradiol) reduced bone turnover to a similar degree as that seen with usual replacement therapy (1.0 mg/day 17β-estradiol), but had a side effect profile similar to that of placebo. In our study additional increases in estradiol levels, as seen with 0.5 and 1.0 mg/day 17β-estradiol treatment, resulted in more side effects without evidence of additional benefit to bone. These data suggest that 0.25 mg/day 17β-estradiol may be an effective and tolerable agent for the treatment of osteoporosis in older women. "

And there are many more.... Most of the women in these studies were post-menopausal and 60+ so whether this translates across to younger women with earlier menopauses, I'm not sure. But it's promising.
« Last Edit: July 23, 2022, 10:21:55 AM by joziel »
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Limpy

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Re: What Do You Wish You Had Known?
« Reply #22 on: July 23, 2022, 12:00:48 PM »

Those links are really helpful Joziel. Thanks for posting.
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Songbird

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Re: What Do You Wish You Had Known?
« Reply #23 on: July 23, 2022, 01:32:21 PM »

Re perimenopause, I wish I knew then what I know now about the process women go through (and how it can vary from person to person).
I can't be sure when peri started for me but, at 57 now (and 5-6 yrs post meno), I have only recently started on patches for symptoms that simply got too much for me to cope with.  Trouble is, I didn't realise what was happening to me, maybe, 10 years ago and, at 54, had to give up work as I simply wasn't coping. Had I started on an HRT regime years ago, I'm confident I would still be working.
Having said all that, I'm enjoying my retirement with OH and am feeling really well on my current regime.
Hope all goes well with you,  Lyndsey 🙏
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margherita

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Re: What Do You Wish You Had Known?
« Reply #24 on: July 24, 2022, 12:01:13 PM »

Thanks for the links to the studies Joziel. While the amount of estrogen the women were consuming was low, I found nothing on their plasma estradiol levels.
So personally I would still use the 300pmol minimum as a reference point for bone density protection and probably quite a bit higher for other symptoms such as depression.

I also wonder why they gave all the women calcium and vitamin d supplements alongside the low estrogen given that they are protective of bones as one can't isolate which was responsible for the improvements.
Also seems odd that they used women of 60-80 years old.
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joziel

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Re: What Do You Wish You Had Known?
« Reply #25 on: July 24, 2022, 12:47:27 PM »

There are several different studies there, margherita.

The last study definitely looked also at plasma estrogen levels and concluded (as pasted above): "In our study additional increases in estradiol levels, as seen with 0.5 and 1.0 mg/day 17β-estradiol treatment, resulted in more side effects without evidence of additional benefit to bone."

The second study mentioned also didn't use women who were 60-80: ""Women who seek MHT for menopausal symptoms in their late 40s or early 50s will have the additional benefit of a reduced risk of bone loss and fracture [3,4]. In such women, a separate first-line drug for prevention or treatment of osteoporosis is usually not required with estrogen (estradiol) doses equivalent to or higher than 25 mcg/day of transdermal or 0.5 mg/day oral. "

I appreciate that one didn't look at serum estradiol levels but I doubt many are going to be sky high at 25mcg.

I'm currently reading everything Lara Briden has written and she is also against higher doses of estrogen and/or testing bloods, since blood levels vary so much on a daily basis. She quotes Professor Prior (Canadian endocrinology professor) who says 'no menopausal woman should need more than 50mcg' and she agrees... I'm not sure I'd go that far as clearly some women do better on higher doses, but it's reassuring anyways. She also reminds people that progesterone (body identical) is also really important for bone health, and often overlooked - and should be taken even if people have had a hysterectomy.
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CLKD

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Re: What Do You Wish You Had Known?
« Reply #26 on: July 24, 2022, 01:01:04 PM »

Difficult to believe any 'professional' who makes such statements when every lady is different  :-\
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joziel

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Re: What Do You Wish You Had Known?
« Reply #27 on: July 24, 2022, 01:15:13 PM »

Well, you could look at it like that - or you could think... wowsers, here's a doctor who sees bazillions of menopausal clients and hasn't found it necessary to prescribe estrogen higher than 50mcg? What is she doing...? Is she just ignoring the experience of loads of her clients, or is she doing something else which results in this?

The answer seems to be - starting with body identical progesterone only (which she says helps with most symptoms) and only then adding in estrogen. Starting at 25mcg and only increasing if needed up to 50mcg.

I know what she says doesn't really fit with what I've heard online from other women - but it's also very possible that, whilst some women may need high doses, there are many women on them who don't need them: Many women are just started out on a high dose so never get to trial lower doses in the first place and then end up increasing and increasing because they know something isn't right - and/or they don't remain at the lower dose for long enough to see if it could be enough. (Newson told me to increase from 25 to 50 after just 2 weeks! Having emailed Dr Currie via this site, any dose should be trialled for 12wks before you know where you're at with it.) The starting dose in the UK seems to be 50mcg (that's the basic dose in the combined patches which are available) so people only want to go up from there...
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CLKD

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Re: What Do You Wish You Had Known?
« Reply #28 on: July 24, 2022, 01:54:57 PM »

Yet many women on the Forum complain that the progesterone part of their regime causes most of their problems.  "bazillions"  ::).  Would be interesting to see any published studies from Prof Prior., also ages and ethnicity of women treated. 

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