Menopause Matters Forum
Menopause Discussion => Postmenopause => Topic started by: olive on September 19, 2024, 11:01:42 AM
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Hi lovely ladies. It's been a while. After Evorel patches (fail), 6 pumps of Oestrogel (fail), Elleste Solo tablets + testogel (higher bloods but no symptom improvement so both discontinued), I'm now on 125mcg Estradot (absorbing at least some, as my estradiol has gone from <88 to 132pmol).
But here I am still permanently drained of energy, less than half a brain and no libido :'( . In July my GP made it clear she won't dose me any higher. I don't know what to do. Push for referral to a specialist? (and end up waiting a year for an appointment!....) or consult with someone private and ask what they would do with me?
it's been such a battle so far and I'm no better off, but I can't live this way so I have to keep trying
Answers on a postcard...
Olive x
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This is likely to be beyond an NHS GP and best handled by a specialist.
Estradiol should be an absolute minimum of 250pmol/L for bone protection (as per NHS literature). The late Professor Studd considered 300pmol/L to be the threshold.
Some women need higher than this for symptom resolution.
First off I would get on the waiting list for an NHS menopause clinic. This however is likely to be months to years depending where you live.
If you can afford it, seeing a private specialist would probably be well worthwhile in this situation.
There is probably scope to try a higher oral dose - the elleste solo may only have been 1mg. Oral at least bypasses the skin barrier, and the NHS considers 2mg a standard dose so you might have better luck there in the meantime whilst you get this sorted properly.
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Thank you bomsh3ll.
The Elleste was 2mg, I should have specified, and my bloods went up to 274 on that. I fought for tablets due to having proved a poor absorber. But my already high SHBG (though nothing about me or my lifestyle explains that!) went through the roof so GP said no point in that as it's only reducing bioavailability. Had I actually felt better, I think she would have let me continue. I'm glad I've finally found a transdermal I can absorb, but it's clearly still struggling to get through...
I think you're right and I should probably go for private while also asking for referral on NHS.
It's a tricky time with lots of scaremongering and gaslighting about private clinics giving women "too much oestrogen" so it would be interesting to see if the private approach is still more flexible.
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Olive have you had thyroid checked? Other things that can cause the symptoms you describe are low iron and ferritin, low vit D and B12.
Get these checked if not already done so.
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The NHS gets hung up about the amount that goes on your skin whereas the important factor is how much is absorbed. The guidelines may be right for most people but not if you're a poor absorber. Given the length of time you have to wait for an NHS clinic I would go private if you possibly can. Your oestrogen is way too low but tiredness can be caused by so many other things too so I agree with the recommendation above to get other possibilities checked out too. You would probably benefit from testosterone too but that needs a specialist and usually your oestrogen levels need to be optimal first.
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Olive have you had thyroid checked? Other things that can cause the symptoms you describe are low iron and ferritin, low vit D and B12.
Get these checked if not already done so.
Elliebee thank you for asking. Yes, all done repeatedly and all normal/good. On paper I'm ridiculously healthy. Sadly I feel the opposite!
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The NHS gets hung up about the amount that goes on your skin whereas the important factor is how much is absorbed. The guidelines may be right for most people but not if you're a poor absorber. Given the length of time you have to wait for an NHS clinic I would go private if you possibly can. Your oestrogen is way too low but tiredness can be caused by so many other things too so I agree with the recommendation above to get other possibilities checked out too. You would probably benefit from testosterone too but that needs a specialist and usually your oestrogen levels need to be optimal first.
Thank you Sheila99 agree entirely. I've already spent £000s over the past 5 years trying to find out what's "wrong" with me and after mapping everything out, it all points to menopause.
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Hi where did U spend the £s?
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Hi CKLD
After my GP tested my iron (age 49 I said I'd been exhausted and 'off' for the past couple of years and couldn't think straight, but I knew it wouldn't be iron - I just didn't know what it WAS) it was clear we were done as far as she was concerned.
So I started doing my own research and paying for private tests, everything from cortisol to VitD, intestinal permeability (so-called 'leaky gut' which I was accused of in the annoying 'guessing game' often played by professionals), DUTCH test (don't! clinicians will dismiss it out of hand!), bone profile with vit/min analysis, worked with a very good nutritionist for 2 years with 4 rounds of personalised supplements to no avail, consultant endocrinologist with another raft of very expensive tests followed by a patronising pat on the head. The list goes on... NO one even raised the prospect that my problems could be menopause related. Given my age, that's astounding. Basically the only things out of whack on paper were sudden insulin resistance (I'm slim and eat low-carb so wtf?) and high cortisol (oestrogen plays a significant role in controlling both!). Otherwise it was crushing fatigue, early waking with palpitations, difficulty concentrating etc. which people kept blaming on me despite a super healthy lifestyle and no change in stressors. In my early to mid forties I was in a great place. At 47 I just started feeling like cr*p.
When I started hot flushes age 51 my GP did then put me on the lowest dose tablet. When I said it was helping with the flushes but nothing else, she said there was no other option on the NHS. I soldiered on. Cut to a couple of years ago and I finally found this forum and similar, thank god. At which point I realised it wasn't just me, I'm not a hypochondriac, and I had been thoroughly gaslit. Ultimately, after losing steam a few times, I sat down with it all and figured it out for myself. So while I'm still on a quest for the right formula, I'm hardened to the fobbing off now and won't stop pushing although it's still so draining. Ugh.
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If you have already shelled out that much money on fruitless endeavours that are heavy on marketing and light on evidence, why not just see a private menopause specialist and get on the optimal treatment for you.
That way you will a) know what you need and b) be comfortable and have a good quality of life whilst battling it out with the NHS to get your treatment long term.
In some cases the NHS will not support the totality of treatment that someone needs, for example higher doses of estrogen, or testosterone. In this instance you get what you can on NHS prescription and fund the balance yourself
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If you have already shelled out that much money on fruitless endeavours that are heavy on marketing and light on evidence, why not just see a private menopause specialist and get on the optimal treatment for you.
That way you will a) know what you need and b) be comfortable and have a good quality of life whilst battling it out with the NHS to get your treatment long term.
In some cases the NHS will not support the totality of treatment that someone needs, for example higher doses of estrogen, or testosterone. In this instance you get what you can on NHS prescription and fund the balance yourself
Yes indeed bombsh3ll, that's the plan I'm now thinking of. I did actually see a meno specialist a few years ago but it wasn't a good experience - long story - so I gave up and went back to my GP. But there's a good private meno clinic a few miles from here. I spoke to them this morning and they were really good. They also try to work with GPs to reduce the cost by asking GPs for bloods if needed, and by prescribing only what's necessary to supplement the NHS prescription. I'm going to book an appointment. I have a Simply Health cash plan so at least I can get the cost of the initial consultation back.
Thank you so much to you and everyone else for weighing in on this. It's helped me though the sunk cost fallacy and given me the oomph to try again. I'll be back with an update - 15th time lucky?! :D xx
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Good luck and please do share your experience after you see them, it really helps others who are looking for good quality menopause care.
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I am reading all this and thinking.. Why exactly NHS bothers with HRT at all...? Its recommended doses are neither here or there mostly doing nothing. What's the point of taking some drug that's is not doing anything?!
These doses they are so fearful to exceed do nothing, so what's the point in giving them to women at all?!
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The microdoses prescribed will be having a placebo effect in a significant number of people.
We know that by the fact that whatever is being tested the placebo group also improves.
Also there is the dogma about it only being for symptom relief, to take the edge off a few hot flushes.
Plus the fact that many clinicians and women understand that estrogen is heart and bone protective etc but not that all these findings came from an era when physiological doses were used.
"Standard" doses have been progressively reduced to cater to all the fear mongering, without regard for whether these either effectively treat symptoms or provide health benefits.
The clinicians who used to prescribe therapeutic doses pre- WHI are all now retired. Nobody dared to even say "hormone therapy" for 20 years let alone prescribe it.
Generations of doctors came through without any training and no idea what a therapeutic dose is.
The move to transdermal also masked a significant reduction in what dose is considered "standard".
For example a 50mcg patch is considered equivalent to a 2mg tablet or 1.25mg premarin, when it really, really isn't.
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Bombsh, when your time comes, you probably will be surprised. :)
When I was in peri I had horrible symptoms, I had hot flashes and night sweats, insomnia, foggy brain, fatigue, joint and muscle pain, dizziness, anxiety and depression, itchy skin over my whole body…. list of symptoms too long… Simple mirena coil sorted all symptoms out just overnight. :) “Heavy duty” HRT would kill me definitely. :)
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"Standard" doses have been progressively reduced
You quite often mention Tibolone, I noticed you advised it to ladies. Do you know Tibolone has a very weak estrogen activity? It is so weak that it cannot kill even me, normally after 1 pump of Estrogel I felt like a dead body, I couldn’t function.
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..hence 70% of women suffer later from VA, incontinence, two in one get Osteoporosis, and you name it..
All could be avoided with one patch slapped regularly on their buttocks!
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Tibolone is not really an estrogen, it is a synthetic compound with estrogenic, progestogenic and androgenic activity, so it is not directly comparable, however there is good data that the doses used are effective for bone protection, with no need to do blood tests to check levels.
Tibolone is also old school and hasn't seen the same shrinkflation in doses over the past 20 years.
I think tibolone may be my first choice when the time comes to graduate from Zoely as I've seen others thrive on it, I don't want transdermal, do need an androgen and would value the convenience of a three in one pill.
My main concern is osteoporosis, I had virtually no symptoms with chemical menopause and my mum didn't suffer with menopause either, she just started getting osteoporotic fractures in her 70s and so did my dad.
I agree orrla it's ridiculous that women can't get proper menopause care due to fear of breast cancer, which 1 in 7 get, and has really good treatment outcomes, yet nobody is bothered that 1 in 2 of us get osteoporosis which has no good treatment and high mortality once serious fractures occur.
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Tibolone is not really an estrogen, it is a synthetic compound with estrogenic, progestogenic and androgenic activity,
I mentioned estrogen part of it because there are a lot of talks about estrogen levels on the forum and dispute the estrogen activity is pretty weak in Tibolone, it is designed to protect against osteoporosis, which is quite interesting for me. I don’t think it may be the first choice for NHS primary level care, anyway I found it was impossible to get it from GP at all, but didn’t have problems to get it from secondary level care.
My mum never suffered from meno symptoms too, but I am suffering, we are so different.
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I think we need to learn to think differently about HRT. All that jazz one feels when Meno starts and during it is one thing, but more important, I think, are results of it. While HRT can help in going through it, reduce what we call symptoms, more important to me at least is in what kind of shape we end up after.
Many women, I can see, think 'oh, I can bear these sweats or whatever and do not need any HRT' thinking of themselves as of some courageous heros..
To me, point in HRT is that it first and foremost makes ones body stronger, slowes down all decomposing of organs in body which deteriorate anyways just less dramatically, like, for example, bones! Or, like muscles! ..because not only skin wrinkles. All inside goes floppy and I have no doubt HRT prevents it from going too fast, makes body fitter!
It doesn't mean women would became immortal, as they may seem to worry about that, it means they would see their GPs less often, have less surgeries, didn't wear nappies, hold urine, had no debilitating burning between their legs, took less medication, have more energy to deal with this stupid world. ...and enjoyed more of that what's left of their lives!
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That's very true.
I'm not one for conspiracy theories but I do believe there are some ways in which it rather suits a patriarchal society to have women who have outlived their usefulness as sex objects and baby factories just quietly shrink and shrivel away.
When I was young I actually used to share my feminist mother's concern about women being stuffed with exogenous hormones from adolescence to old age "as if we are inherently defective".
I now see how cruelly her generation were conned and gaslit into spending their later years in avoidable suffering.
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Hi ladies, I'm back with a (partial) update in case it helps anyone on here. I went to see Dr Joanne Horgan at the Female Hormone Clinic near where I live. She said my oestrogen level (I'm on 125mcg Estradot) is still well below where it should be (160 vs 250-600 pmol/l) and correspondingly, testosterone is low end of normal. She proposes to increase the Estradot by 25 mcg every 3 months until I feel better. This must be monitored with ongoing 3-monthly blood tests as it's above licenced dose. I asked if it was appropriate to request an NHS referral. She said it was, and that an NHS specialist would take the same course of action. Once my oestrogen is at a decent level, she would put me on testosterone if my libido still hasn't improved. She said oestrogen is much more likely to be the issue there. I'm inclined to agree as Testogel did me no good when I tried it for 6 months earlier this year. Interestingly she also requested FSH for the blood test - she said that tells you "if your brain is happy with the dose". It's the first i've heard of this so will try to find out more next time. Mine has come out higher than it should be.
I went back to my doctor armed with the letters from the clinic. GP has agreed to continue prescribing 125mcg which is my current dose, with the clinic prescribing the additional dose. But... she also said they "will not prescribe more than 125mcg in NHS practice". I didn't have the brain cells to ask exactly what that means at the time.
GP has also agree to continue blood tests so I don't have to pay for them (although it does cost £50 anyway for the private specialist to interpret the blood report each time!). I also asked for an NHS referral.
I've now been given a 30-minute (!) appointment at the end of this month with the surgery's menopause specialist, who I've never met, but I've not been told why. when I asked for an NHS referral to a specialist, I obviously meant a consultant not another GP, but I'll wait and see what happens at the appointment and will report back again then.
It's obviously going to be a relatively expensive 12 months, but the first step is to feel better. Once I cross that bridge I'll think about how to push for the necessary dose on the NHS.
Watch this space...
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Hello Olive.
Thank you so much for your update. It is very helpful when ladies report back and much appreciated.
I became a patient of Newson Health at the end of 2019, mainly because I wasn't feeling great on my HRT and COVID and lockdown meant that I couldn't get any doctors appointments.
Since then my GP surgery have set up their own menopause clinic run by a Senior Nurse Practitioner so I am now back with the NHS.
I hope you find the regime that works best for you and please let us know how you get on.
Wishing you well and take care.
K.
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You are waiting to see your GP surgery's menopause specialist? Good luck. I tried that approach after it became clear my GP is neither knowledgeable nor cooperative on the topic of HRT.
Their menopause specialist turned out to be my very own GP masquerading as some sort of HRT expert :o ;D ;D
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firstflush that's funny but not funny - I'm sorry :'( . The doctor I'll be seeing is definitely not my GP and I've heard she's their specialist - I'm not holding my breath but I looked up her qualifications and for example she's qualified to fit HRT implants. So hopefully more knowledgeable 🤞🏻.
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Hi again ladies, I'm here with another update after a 30-minute appointment with the ACTUAL menopause specialist at my local NHS practice. She totally got it, is taking over the plan from the private clinic (including dosage) so I don't have to pay, and has referred me to an NHS menopause clinic (there will obviously be a wait but at least I won't be paying for private consults and scripts in the meantime). Once my oestrogen is at least 250 she also proposes trying testosterone again if my libido doesn't pick up. I had to ask her 3 times if I had understood correctly. Then I burst into tears with relief. So what with that and my abundantly clear brain fog and inability to string a sentence, she can be in no doubt I'm genuine ;D
So my message to anyone reading my posts and progression in this thread is DO NOT GIVE UP. Keep pushing. Be a thorn in your surgery's side. If you can afford it, see a private specialist to bolster your case for treatment. If you can't, try menopausesupport.co.uk where they do a one-off consult for £75 which again will get you a proper, informed discussion and a letter to your GP with a proposed plan. My problem is poor absorption. Yours may be different but it doesn't matter. You deserve to be heard and to get the treatment you need without going bankrupt.
My only question of course, is why the hell didn't they send me to her before now?!?!? I'd never heard of her and another GP was supposedly the "female testosterone specialist" so that's all pretty confusing ... again the moral of the story is do your homework about your local practice. Ask women locally on Facebook if they recommend a particular GP for menopause at your practice... etc. Don't be fobbed off by conflicting information (e.g. in my last update, my own GP had told me they would not prescribe more than 125mcg patch on the NHS, whereas the doctor today told me in my situation that's not the case, and I knew that because my private consult told me the NHS does give significantly higher doses in cases like mine - along with anecdotal evidence from you lovely ladies :-*)
I really hope this helps you to keep pushing for what you need, and I'll continue to come back with updates. I'm now on 150mcg Estradot and will no doubt be going up to 175 in Jan so will keep you posted on progress - no radical changes yet but at 160pmol that's no surprise. Fingers crossed.
Also in my last update I said I would find out why the private specialist wanted my FSH tested - doctor today told me if your FSH is high it's your brain saying it's unhappy and crying out for more oestrogen. Good to know!
Olive x