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Author Topic: Newbie - 66 and still going through it!!!!  (Read 2171 times)

sheila99

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Re: Newbie - 66 and still going through it!!!!
« Reply #15 on: August 01, 2025, 06:20:12 PM »

There's normally a very long wait for an NHS meno clinic, a year isn't unusual. I agree with everyone else that 25 mcg isn't enough for you and you should increase. Unless you can see a more knowledgeable GP I'd advise you to go private if you can possibly afford it. Newson does video appointments so you don't have to let be near a clinic and they will prescribe the amount you need to feel better (others available too). I know it's expensive but there's anything worth spending on it's your health. Might be worth asking your surgery first if they have a meno specialist.
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CLKD

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Re: Newbie - 66 and still going through it!!!!
« Reply #16 on: August 01, 2025, 07:17:45 PM »

Health should be our first priority especially when we can't access medics with knowledge. 

Where's the BMS in all this?
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Shirazette

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Re: Newbie - 66 and still going through it!!!!
« Reply #17 on: August 01, 2025, 08:55:48 PM »

After having hot flushes and night sweat for 15 years, both of which improved re intensity over the years, when the nght sweats suddenly increased to 8/9 a night I decided I had to bite the bullet and see a specialist to get full info on what could possibly be done at age 68. I'd been waiting 5 years for Fezolinet (?) to be approved in the UK and wanted advice on that because I couldn't see any other alternatives due to my age.

Much to my surprise the specialist started me on Estradot 12.5, then 25 after 6 weeks. The day flushes improved quite quickly but night sweats were more tricky. I gradually increased and 2 years on am now on 75 (+ utrogestan 100). The day flushes are no more but I do properly overheat doing exercise (tennis) when it's warm which is rather embarrassing. I still wake up 5- 6 times a night, sometimes hot , sometimes not, sometimes sweaty but generally get back to sleep okay. The specialist doesn't really want to increase Estradot any more as I'm little (46kg). My oestrogen levels last year were 290.5. She suggested lots of other things to try (supplements, CBTi, foods, plus several other ideas) all of which I did in earnest, I even tried a sleep restriction programme for 6 weeks but nothing made any difference so I have now accepted that this is as good as it gets. My mum was still having them to her dying day in her 80s so I think it's in my genes!

As others have said a 25 patch is a low dose and going by my experience it would be well worthwhile increasing the dose but will probably mean you'll have to go private unfortunately though worth giving the GP a go first.
« Last Edit: August 01, 2025, 08:57:59 PM by Shirazette »
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bombsh3ll

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Re: Newbie - 66 and still going through it!!!!
« Reply #18 on: August 01, 2025, 09:32:15 PM »

290pmol/L is still pretty meagre and if I were paying for treatment I would want at least a 100mcg patch.

I don't think being small justifies subtherapeutic treatment, your low weight is a risk factor for osteoporosis and you don't have the thrombotic risk of someone who is overweight.

If you still have symptoms I would advocate for an increase in dose.

You say your specialist doesn't want to increase your dose, but it shouldn't be a unilateral decision, paternalistically handed down without regard for your ongoing symptoms or your voice being heard within the decision making process.
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sheila99

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Re: Newbie - 66 and still going through it!!!!
« Reply #19 on: August 02, 2025, 08:30:07 AM »

Your levels (and your symptoms) should be the determining factor not your weight. It doesn't work the other way round, they wouldn't give you more because you weighed more than average.
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Dragonladee

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Re: Newbie - 66 and still going through it!!!!
« Reply #20 on: August 02, 2025, 09:03:38 AM »

Thank you all for your replies and comments, I will certainly give my GP a try to see if I can increase the dosage through her and if not it looks like it will be back to the specialist. 

Shirazette, you sound like you are having a horrible time of it, and probably not helped by knowing your mother went through it until her 80's.  My mother grew up in an era where you didn't talk about these matters and I don't really know how she went through the menopause.  I can remember her being hot and fanning herself during the summer months, but didn't realise what it was and I don't know if she "came out the other side" or continued with problems.
You just keep hanging on and hoping it will end, but thanks to suggestions on here it appears that an increase in estrogen will improve things and I have to give this a try.
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MrsMitch

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Re: Newbie - 66 and still going through it!!!!
« Reply #21 on: August 02, 2025, 09:49:11 AM »

Hi Dragonladee, as others have said, you definitely need a higher dose. I had the same as you,  my head used to drip with sweat & even in winter the hair on my neck was wet. I'd actually forgotten I used to get that until I read your post. I use 4 pumps of oestrogel a day & in the past I have been on 6. Other ladies on here use much more. There's absolutely no point in using any HRT unless you use a high enough dose to control your symptoms. I've recently been seeing a surprisingly helpful GP who told me she would not want to stop prescribing me HRT regardless of age (I'm 57). She said the practice policy is: if a patient gets relief from it, it can be prescribed indefinitely. She said she is happy to persevere until my symptoms are under control. But as you will learn the longer you're here, we often have to fight to get what we need. If you print out as much information as is relevant to your issues that contains all the guidance the NHS should be working to if necessary, you can challenge any refusals you come up against. GPs don't like it but you don't need to suffer & are entitled to appropriate treatment.
Also, there are neck fans you can buy on Amazon. They are rechargeable & look a bit like a set of headphones. They are really good & target the area you need cool air the most. They'll actually dry your hair. They're only about £20. There is one that is about £200 that actually blows chilled air like a mini air conditioner round your neck, if funds allow.
Do let us know how you get on.
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Wrensong

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Re: Newbie - 66 and still going through it!!!!
« Reply #22 on: August 02, 2025, 11:05:28 AM »

Quote
I am beginning to think this will never end, as I have friends who have had a few months of discomfort / symptoms and then they are all clear, I am at nearly 12 years and each year feels worse.  Sorry for the long story, but is anyone the same or similar?
I'm 63, in my 20th year since onset of perimenopause at 44, still distressingly symptomatic, most problematically with persistent vasomotor symptoms & debilitating insomnia.  Despite working my way through the catalogue of HRT options over the past 11 years, I still get a variable no of long-lasting episodes (up to an hour) of intense overheating every night & the dreadful associated fight or flight cascade that can make it v difficult & too often impossible, to get back to sleep.   

I do also get flushes by day but these are less problematic than those overnight.  I can't sweat under any conditions & while this means I don't have to cope with the horrible effects of that as sadly you & others who've posted here do, it does make it very difficult to cool down, hence the overheating episodes & frightful adrenalin effects remain intense & last a long time. 

I remember my Mum, never on HRT, still flushing into her late 60s & possibly until she died at 74.  So like you, I very much fear I'll be one of the few who continue with vasomotor symptoms for life.  I do have other systemic conditions complicating matters, meaning HRT's efficacy is probably compromised, so please don't take my circs as likely to mean you'll also continue to suffer given appropriate advice & help.  I'm just posting in solidarity as it can be be isolating & v demoralising to feel an outlier with something that badly & persistently compromises QOL.  Worse still, there can be a sense of personal failure when inevitably we compare ourselves with those of our peers who seem to have struck luckier in the menopause lottery.

Though I understand your clinician's sensible approach in starting you on a low dose given your age, I agree with the others that a 25mcg patch seems unlikely to control the degree of sweating you experience, so it seems well worth pursuing a dose increase & if this either isn't forthcoming or effective enough, another appt with a menopause specialist.
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bombsh3ll

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Re: Newbie - 66 and still going through it!!!!
« Reply #23 on: August 02, 2025, 12:07:35 PM »

Also just putting up with symptoms isn't a good idea from a health point of view either - untreated hot flushes aren't benign and there is good evidence that they are a predictor of worse health outcomes in later life.

Even if your provider doesn't consider your quality of life important enough to warrant treatment, the health risks of going untreated or suboptimally treated should also form part of the discussion.

If you have any risk factors for osteoporosis I would also emphasize these and the fact that estrogen is licenced for osteoporosis prevention in the UK. This can help in situations where inappropriate treatment options for menopause are being pushed, as you can point out that none of these have a licence for osteoporosis prevention.
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Dragonladee

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Re: Newbie - 66 and still going through it!!!!
« Reply #24 on: August 02, 2025, 01:03:33 PM »

Hi Mrs Mitch, sorry to hear you are also having a prolonged menopause, it just drives me nuts that women aren't all given what they need to normalise things and ease these awful and distressing symptoms, even female Drs dont seem to want to help or can't help, I'm sure it is all down to financial reasons. 
I did actually buy a neck fan a couple of months back and it is brilliant, the only problem is you can't watch TV at the same time as it wafts past your ears and you can't hear whats going on.

Hi Wrensong, I haven't had the feelings of flight or fight that you detail on waking in the night, but do wake up a lot in the night with overheating and sometimes can't go back to sleep too easily.  I have had many other symptoms over the years, some have gone, some remain and some are new.  Like you say it is quality of life that is compromised as I find that I don't like to go out and socialise due to the sweating and the weight gain (which is not drastic but I am concious of it, having always been fairly slim 10/12 and now a size 16 creeping up to 18).  I know people say don't bother about it (weight or sweating), but it is easier said than done.  I was in a restaurant a few weeks ago madly fanning myself with the menu and people look as they go past and women give you that knowing sympathetic look, which makes you feel uncomfortable. 
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CLKD

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Re: Newbie - 66 and still going through it!!!!
« Reply #25 on: August 02, 2025, 01:09:07 PM »

Interesting bombsh3II - mayB another thread about how they may be a predictor and of which health outcomes ? 
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Mary G

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Re: Newbie - 66 and still going through it!!!!
« Reply #26 on: August 02, 2025, 01:24:45 PM »

I hope there are some very embarrassed doctors reading this thread because it is actually negligent to leave women suffering in this way. 

I'm wondering what sort of person sits in front (or perhaps I should say sits at the other end of a phone) of a deeply distressed woman with debilitating symptoms and comes out with the nonsensical crap we hear on here all the time.  A lot of women have had to stop working because their symptoms are so unbearable.  It's incredible and I wish these were Guardian comments so I could have a good swear about them.  It's difficult to know if they are useless or just don't care.

I've been on this forum for about 10 years now and I'm greatly encouraged by the newer, younger generation of menopausal women on here who are more assertive and don't just meekly suck it up and accept any substandard treatment that's dished out because they think the doctor is automatically right.  It's very refreshing.

My advice is get help privately if you can afford it.
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Dragonladee

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Re: Newbie - 66 and still going through it!!!!
« Reply #27 on: August 02, 2025, 04:42:14 PM »

Yes, Bombsh3ll, great observations and I'm about to look into future outcomes of putting up with menopausal symptoms.  These are things that you don't really think about and just since my start of this thread yesterday, I have been given so much food for thought.
I really can't believe that women aren't just given HRT as a matter of course.  Its astonishing and more to the point, I can't believe that I have put up with it as long as I have without informing myself more. 
I am so glad I joined this forum and thankful to all you ladies who contribute and inform.

Great comments Mary G and I completely agree that Drs should be reading this (it was actually my GP that put me onto this site, as I never knew it existed).  It does make you wonder how different things would be if men were menopausal???
You must have seen many changes in attitudes and treatment over the 10 years you have been on here.
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Wrensong

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Re: Newbie - 66 and still going through it!!!!
« Reply #28 on: August 02, 2025, 06:38:10 PM »

Dragonladee
Quote
I haven't had the feelings of flight or fight that you detail on waking in the night
I'm glad you don't as this is the worst aspect of it for me.  But I can also well imagine the distress you feel if you're sweating copiously in a public setting.  I find I do flush badly (I'm fair skinned & go very obviously red) in stressful situations & that makes it difficult to focus on what's being said, how I need to respond etc.  In fact very recently an important (to me) & v stressful encounter took a horribly unexpected turn when I was thrown by soaring adrenalin, flushing badly & unable to decode what the other person meant & ended up completely flunking the exchange.

Bombsh3ell yes
Quote
untreated hot flushes aren't benign and there is good evidence that they are a predictor of worse health outcomes in later life
the awareness of this adds to the stress & sense of helplessness of the situation.
« Last Edit: August 02, 2025, 06:44:27 PM by Wrensong »
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Shirazette

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Re: Newbie - 66 and still going through it!!!!
« Reply #29 on: August 02, 2025, 09:05:19 PM »

290pmol/L is still pretty meagre and if I were paying for treatment I would want at least a 100mcg patch.

I don't think being small justifies subtherapeutic treatment, your low weight is a risk factor for osteoporosis and you don't have the thrombotic risk of someone who is overweight.

If you still have symptoms I would advocate for an increase in dose.

You say your specialist doesn't want to increase your dose, but it shouldn't be a unilateral decision, paternalistically handed down without regard for your ongoing symptoms or your voice being heard within the decision making process.

Hope I'm  doing this right, I haven't used the quote function before.

Thanks for your reply Bombsh3ll but I'm going to stick to the 75 until I see the specialist again, probably in January. I'm sure she would agree to increase the dose if I was keen to try but it would also mean doubling the progesterone which I'm very reluctant to do.  I might have another test to see where my levels are in January, I think I might have been on 50 when I had that test. I do manage alright now despite the disturbed sleep. I must be getting enough sleep as I'm not tired during the day, it's more a concern over any long term damage it might be causing (alzheimers and the like)

Re the specialist, nothing paternalistic going on and I feel very listened to, I'm very happy with her care. I do have osteoporosis and have been seeing an excellent (NHS) consultant for many years and I am now osteopenic through treatment (yes it can have scary side effects but can't imagine what state I'd have been in now without it). Of course I'm hoping the HRT will help with that too.
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