Menopause Matters Forum

Menopause Discussion => All things menopause => Topic started by: Turtle45 on February 24, 2025, 06:17:06 PM

Title: HRT not working
Post by: Turtle45 on February 24, 2025, 06:17:06 PM
Hi

Has anyone else found that HRT did not help with their symptoms, especially the psychological ones?
I started to get mood swings in December 2023 and various other symptoms. Then I became severely anxious about 4 months later. I had had PMDD for years but not suffered massively from anxiety before.
I was tried on a variety of HRT but nothing helped with their symptoms, especially the anxiety so my Dr had completely dismissed it having anything to do with menopause. 
I just wondered if anyone else knew their symptoms were menopausal but they had found that HRT didn’t seem to work for them?
Would really appreciate any insights! I’m quite frankly a mess. I’ve gone from having a good job, home, friends and being really healthy to being a husk of the woman I was.
Title: Re: HRT not working
Post by: Fizwhizz on February 24, 2025, 06:25:44 PM
I found it took a long time to improve my menopause psychological symptoms and in the end it turns out it was both menopause and hypothyroidism that needed addressing with hormone replacement treatment. Things have improved a great deal but I still struggle with things and I’m definitely a very different version of myself now and will never be the person I used to be. What symptoms are you experiencing? Is it mainly anxiety that you’re struggling with? Mine was more low mood, flatness, lack of motivation.
Title: Re: HRT not working
Post by: SundayGirl on February 24, 2025, 06:51:18 PM
As Fizwhizz said, just because you're a certain age, please don't put everything down to menopause.

HRT made me anxious and before that, anxiety, depression, moodiness were only relieved by appropriate thyroid meds and getting my core vitamins to a decent level for me.

When was the last time you had a full health MOT?
Title: Re: HRT not working
Post by: Turtle45 on February 24, 2025, 07:10:59 PM
Thanks for the responses.  It’s nice just to not feel alone. I have always struggled with my hormones having PMDD most of my life but I started to get the low mood and sobbing everyday rather than cyclically. The. The anxiety kicked in.
 I also had sweats, brain fog, bladder issues, tinnitus and a range of other things. I’ve had lots of tests and they haven’t shown anything.
There were other factors affecting me emotionally but I struggle to believe I went from being really good at my job and having a friendly, confident  personality to  the other end of the spectrum without it being to do with my hormones.
Title: Re: HRT not working
Post by: Kathleen on February 24, 2025, 07:57:41 PM
Hello Starfish


A GP told me that HRT is very good at treating the physical symptoms but not the psychological ones and that has certainly been my experience.

I never had PMDD and I didn't suffer any issues post natally but I am much less stable emotionally now that I am post menopausal.

I am continuing with my HRT and looking at life style changes to help myself but I think the level headed person I used to be had gone  forever.


I am sorry that I can't be more helpful but you are not alone and I definitely think our hormones are to blame.

Wishing you well and take care.

K.
Title: Re: HRT not working
Post by: Turtle45 on February 24, 2025, 08:43:05 PM
Thank you Kathleen. I genuinely think I am going mad with the anxiety and memory issues. HRT and antidepressants haven’t helped so at a bit of a loss as what to do.
Title: Re: HRT not working
Post by: Jopurpose on February 24, 2025, 10:40:57 PM
I think my HRT has stopped working too so I’m currently undergoing investigations.
I asked my GP how I was supposed to continue coping with the panicky-like anxiety and tearfulness in the meantime and she has given me Propanolol to take as and when necessary. It’s really helped me.
Title: Re: HRT not working
Post by: Epona52 on February 25, 2025, 06:36:18 PM
Hi starfish,
I can absolutely feel your pain, and everything you have said feels as though your telling my story,
I was a happy outgoing person who has health issues, but at 52 anxiety hit me head on and I have struggled ever since, gp upped my oestrogen gel to four pumps but I feel I'm not a good absorber, I wake every morning with raging anxiety that's there for no reason, I have depression on and off and now suffering with bladder issues, I struggle to go out sometimes to the point the anxiety controls me and I can't get out of the door, I've also given up driving through anxiety and panic attacks,
I always loved to get out and be independent but not now, my confidence has gone and I feel I will never be the same as I once was, gp's are pushed these days and when you phone for an appointment and message says your number 83 in a queue it just makes you
Give up, if it wasn't for this site I would feel so alone in this journey,
Take care and best wishes
Title: Re: HRT not working
Post by: bombsh3ll on February 25, 2025, 07:29:32 PM
When you say you have tried HRT, what are/were you taking?

Often when people think their treatment isn't working it turns out they are on a very small dose, or a preparation that isn't the most suitable for them.

Psychological symptoms, particularly on a background of reproductive mood disorders such as PMDD often require higher doses of estrogen than it takes to simply suppress hot flushes, and testosterone can also be extremely helpful.

It may be that you are sensitive to either some or all progestogens and need an individualised approach here too.

Others find tibolone a great option where standard HRT preparations haven't suited.

I would suggest seeking help from a specialist given that primary care treatment hasn't helped.

Whilst nobody can promise that any particular treatment will be a silver bullet for what can be really complex and challenging issues, it would be premature to write off hormone therapy until someone with the appropriate skill level has been involved.
Title: Re: HRT not working
Post by: joziel on February 26, 2025, 06:51:33 PM
I echo what bombshell says. My experience is that people are not being given anywhere near enough estrogen to help them. Doctors are obsessed with the dosage prescribed and not how much you are absorbing or serum levels. And everyone is an individual and needs varying amounts, with the amount needed for PMDD and neurological issues being known to be much higher.

If you haven't taken enough estrogen to get up to 800-1000pmol, I would strongly recommend you try that. There's nothing to lose, if it doesn't work, you can just come off it if you want to, or reduce. But at least you will have trialled it.

To be able to do that, you might need to go to a private clinic like Newson Health. That's where I go. I need to have estrogen around 800pmol+ for my neurological symptoms.

For more information, look up Dr Felice Gersh on YouTube or join the Bio-identical Hormone Replacement Therapy group on FB. It's in the US so you need to convert from pmol to pg using an online calculator, but the ranges they are dosing in are absolutely what I need and their info on progesterone is spot on as well.
Title: Re: HRT not working
Post by: DottyD68 on February 26, 2025, 07:36:45 PM
Hi Starfish43,

I tried several different combinations and regimes of HRT over a 3.5 year period after having struggled with perimenopause symptoms for 7 years. I really wanted it to work but it never gave me the relief I had hoped for. Some symptoms disappeared temporarily whilst new ones appeared, the worst one was anxiety which I had never previously experienced in my life. It was worse when I was on 4 pumps of gel. As I reduced the gel, the anxiety eased along with the huge sore tender boobs. The less I had, the more my symptoms reduced.

I found I was unable to get a balance between my dose of HRT and my own wildly fluctuating hormones.

I have recently stopped HRT as a trial to see where my own body is at. I am willing to retry HRT if my symptoms come back. But so far I have felt the best I have in years and my weight has dropped to near normal levels. Maybe it is a temporary relief or maybe I have finally got over the worst and things are starting to settle naturally as a lot of ladies say it does. Time will tell.

What I have learnt is that HRT is not a one size fits all and it has to be tweaked until you find what is right for you individually.

I hope you start to feel better soon with whatever you find helps X
Title: Re: HRT not working
Post by: Turtle45 on February 26, 2025, 08:07:10 PM
@joziel - how can you find out if your serum levels are high? I’ve been told my blood test show normal oestrogen levels when I’ve had them done. Haven’t had any for a while. Dr is reluctant.
Title: Re: HRT not working
Post by: Mary G on February 26, 2025, 08:54:29 PM
joziel, I completely agree about meddling doctors constantly badgering women to reduce their oestrogen dose.  It really fouled things up for me years ago when I was settled on an HRT regime and I stupidly allowed a doctor to persuade me to reduce my dose - never again.

You are right, the menopause unleashes a complicated set of health events and in my case it's migraines which can only be prevented by a decent, stable dose of oestrogen.  If I go too low, I'm plagued with migraine auras.  Different medical conditions require different doses of oestrogen but generally speaking, women with depression and anxiety need to go high.
Title: Re: HRT not working
Post by: joziel on February 26, 2025, 09:10:57 PM
@Dotty - things can be much more complicated because we are really in the dark ages with all this, in fact we are all pioneers thanks to the WHI putting the brakes on this for decades.

In my own case, anxiety (as with you) got worse initially with each increase in estrogen. So of course I assumed it was being caused by the estrogen and I stopped it. All my low estrogen symptoms returned and the anxiety didn't go away. So I restarted HRT and, this time, felt no worse with each increase. I have no idea why. Since I had explored no HRT, low dose HRT and average dose HRT, I decided the only unexplored thing remaining was getting levels up. So I increased... and hey presto, all my anxiety went away. If you try to reason it, it makes no sense - why was anxiety not a symptom for me UNTIL I started HRT? But stopping HRT didn't stop the anxiety? And then getting levels HIGH got rid of it??

This is exactly what I mean. We can't reason this stuff yet, because we don't have the research. There is only trial and error and working through different combinations of things, systematically. Best not to assume things, because they can be wrong and we might not try the one combo which works. And one thing many women don't even get to explore, is those higher E doses.

@Starfish - don't accept being told that you have 'normal' estrogen levels, because that is completely meaningless. Request all the actual results of your blood tests - which you are legally entitled to ask for copies of - from your doctor. Look at all the results. Anything under 270pmol is LOW, by anyone's standards. An average-ly acceptable level for many women is between 400-650pmol. And some women need to be between 650-1000pmol to get relief. It is very individual and involves trial and error.

Personally, I had inner tremors through the night which would feel like the bed was moving under me, hypnic jerks every time I began to fall asleep and my heart would beat incredibly hard and fast in my chest through the night - even when my estrogen was around 450pmol. NHS doctors would all tell me my symptoms most definitely could not be due to menopause or estrogen with levels like that. Only Newson Health told me they wanted me to get my estrogen up and see what I felt like with it much higher. As soon as I got to around 600 I noticed a huge improvement and even more around 800pmol. I now sleep about 7 hours a night and get 1 hour of deep sleep (according to my Apple Watch). Previously I was getting about 2 hours of dozing and I was a zombie every day. The NHS would have put me on pregabalin or gabapentin or SSRIs. I take nothing other than hormones at the moment (including for my thyroid). I am still not 100% perfect, in terms of sleep - I should be getting over 8 hours, I still have very faint tremors and I wake many times a night but I am able to go back to sleep now. I will be trying to get slightly higher to 1000pmol - except now there's an Estradot shortage so I might have to wait...
Title: Re: HRT not working
Post by: DottyD68 on February 26, 2025, 10:16:30 PM
Hi Joziel

Sorry the anxiety didn't go away for you when you reduced your HRT but glad you were able to feel better on the increased dose.

Our situations appear to differ in that for me reducing the dose definitely reduced/eliminated several symptoms for me that I didn't have prior to starting HRT. Anxiety was only one of them. I tried several different combinations of HRT which did not eliminate the new HRT symptoms. It was a no brainer for me to reduce, then try stopping HRT, as being on it made me feel much worse than being on a very reduced dose (or off it).

What is apparent is that we all react differently to HRT. Starfish43 asked if anyone else found HRT didn't work for them and my post was in response to her question.
Title: Re: HRT not working
Post by: Fizwhizz on February 27, 2025, 10:35:16 AM
My mood has definitely slipped. Last time my bloods were taken they were 230 ppmol for oestrogen and they’ve dropped to 180 ppmol on 50mg patches. I just seem to be poor at absorbing everything, including my thyroid meds. I’m also on testosterone now and my free testosterone is above the range but my other level is low end of within range. I’m going to stick another patch on as I just can’t be bothered with anything currently and feel flat, negative and low. I was definitely feeling better with slightly higher oestrogen. It’s helpful reading everyone’s different experiences.
Title: Re: HRT not working
Post by: joziel on February 27, 2025, 04:49:10 PM
Fizwhizz, you should easily be able to increase up to 100mcg patches via any GP. 180pmol is really low, not enough for even bone protection or the health benefits of HRT. 280pmol is the bare minimum really... 
Title: Re: HRT not working
Post by: Fizwhizz on February 27, 2025, 04:58:41 PM
Fizwhizz, you should easily be able to increase up to 100mcg patches via any GP. 180pmol is really low, not enough for even bone protection or the health benefits of HRT. 280pmol is the bare minimum really...

Thanks, I’ve stuck another patch on. I was a bit worried about the progesterone but I think one tablet of 100 mcg per day is still ok especially as I’m not absorbing well. I’ve definitely felt my mood drop so I wasn’t surprised to see my oestrogen levels have dropped. I’ll arrange a review and see what’s suggested. I really do feel very low and absolutely lacking in any interest in anything whatsoever and clearly am not getting any other benefits at these levels either. 
Title: Re: HRT not working
Post by: joziel on February 27, 2025, 11:15:36 PM
Yes, at that low level your P should be fine where it is. If you manage to get to the dizzying range of 400pmol you might need to consider an increase.

You might need some testosterone as well, if you are finding you have no interest in anything. For me, that is very T related... Libido is not just about sex, it's about creativity and investment in life etc.
Title: Re: HRT not working
Post by: Fizwhizz on February 28, 2025, 07:51:26 AM
Yes, at that low level your P should be fine where it is. If you manage to get to the dizzying range of 400pmol you might need to consider an increase.

You might need some testosterone as well, if you are finding you have no interest in anything. For me, that is very T related... Libido is not just about sex, it's about creativity and investment in life etc.

Thanks, somehow I doubt I’ll be getting to 400 pmol, based on previous experience but we’ll see! I’m already on testosterone and my free testosterone is out of range but my systemic levels are just in the low end of the range. I seem to be generally poor at absorbing/converting everything. Testosterone definitely makes a difference but obvs I need my oestrogen levels up as well to feel better and get rid of this horrible feeling of apathy.
Title: Re: HRT not working
Post by: Turtle45 on February 28, 2025, 06:06:17 PM
I’ve had a blood test which shows estrogen is high, progesterone is low and LH and FSH are really low. Does anyone know if this means anything? Thanks x
Title: Re: HRT not working
Post by: joziel on February 28, 2025, 07:04:48 PM
You need to post the actual numbers. Otherwise that's pretty subjective and meaningless. You have a legal right to the actual results.
Title: Re: HRT not working
Post by: Fizwhizz on February 28, 2025, 08:22:28 PM
I’ve had a blood test which shows estrogen is high, progesterone is low and LH and FSH are really low. Does anyone know if this means anything? Thanks x

I’m assuming you’re peri menopause Starfish? So trying to balance hormones when they’re shifting around isn’t easy either. Sometimes adding extra oestrogen in can actually cause symptoms. As Joziel says you need your test results to try and understand what’s happening.
Title: Re: HRT not working
Post by: Turtle45 on February 28, 2025, 10:48:46 PM
Estrogen was over 1000. Progesterone 0.9 and FSH and LH both around 0.4
If that means anything to anyone!
I’ve had lots of peri symptoms so I believe so.
Title: Re: HRT not working
Post by: joziel on February 28, 2025, 11:34:56 PM
What day of your cycle was that test taken on? It could well be your own estrogen spiking and contributing. This is one of the problems with doing tests during peri. I tend to do at least 2-3 tests and see what the average is and if results are consistent, before I adjust any dosages - otherwise it's just a moving target. I test myself, because I don't think my doctor would agree to test that often.

It's also worth considering contamination. Was the blood drawn from an arm you apply gel to (if you use gel)? Did you apply gel the morning of the test? (It is best not to, since it peaks a few hours after application.)

It's fine (good) that FSH and LH are both low. That suggests that your body is getting enough estrogen.

However, progesterone being low isn't good. What dosage are you on and how are you taking it? Was this taken whilst you were on progesterone? (In the last 2 weeks if on sequential?) The NHS ignores progesterone results - I think because the test is not reliable if you take progesterone orally (which most women on HRT do). It is only reliable if you take it vaginally and rectally. However, if you take it orally it will instead read metabolites produced by the liver as progesterone proper - which they are not. This means you will get a falsely high reading. Your reading isn't high which means your real levels could be even lower. I'd increase progesterone dosage if I were you and also consider taking it vaginally if you're not already as this leads to better absorption.
Title: Re: HRT not working
Post by: Fizwhizz on March 01, 2025, 08:40:33 AM
Estrogen was over 1000. Progesterone 0.9 and FSH and LH both around 0.4
If that means anything to anyone!
I’ve had lots of peri symptoms so I believe so.

Good advice from Joziel. When you say HRT isn’t working anymore what are your specific symptoms? Have you looked at the symptoms of oestrogen dominance? Do they correlate? I had problems on HRT in peri as my own oestrogen spiked hugely and adding in extra sent me loopy. I remember in peri the aim was to try and balance the hormones out more so as Joziel says the low progesterone could be your issue. Alternatively have you had your thyroid checked? This can go out of whack too.
Title: Re: HRT not working
Post by: Turtle45 on March 01, 2025, 08:50:16 AM
@joizel really appreciate the advice. I’m not having a cycle because I was put on the progesterone pill. How do you do your own testing?
Title: Re: HRT not working
Post by: joziel on March 01, 2025, 06:38:56 PM
Yeah my thyroid is messed up in all this too, although that's a long story. But I'm now on both T4 and T3.

I don't understand, Starfish, when you say 'I'm not having a cycle because I was put on the progesterone pill'. Remind me what you are taking? Are you taking utrogestan as well as a synthetic progestin? Or just the synthetic progestin?

If you're taking a synthetic progestin, then it will most likely be suppressing your own ovaries and it's less likely that the estrogen is from you - although the effects vary depending on the pill, with some more suppressive than others. (Desogestrel prevents ovulation and is more suppressive than levonorgestrel for eg.)

But it's really not surprising your progesterone is low if you're on a synthetic progestin. Most of them prevent ovulation, that's how they work. If you don't ovulate, you won't produce any progesterone of your own. Progesterone is made from the corpus luteum at ovulation. There is no corpus luteum without ovulation. There is no ovulation on the majority of synthetic progestins... That's how they are birth control.

Really if you want to balance your hormones and get some body identical progesterone, you need to take utrogestan. You can take that as well as the synthetic progestin if you want although ideally you wouldn't. Why are you on the progestin?

As for the testing, the best option I think is the Tasso Female Hormones test with Randox Health. It costs about £45, you do it at home and because it takes blood from your shoulder/arm, it avoids the issue of finger tip contamination. So as long as you don't put gel on your upper arms, you will avoid a contaminated result.
Title: Re: HRT not working
Post by: Turtle45 on March 01, 2025, 09:30:08 PM
Thank you so so much for all the information. I really appreciate it. Drs do not tell you enough and I know very little about the pill as when I first went on it in my teens I had lots of side effects.
When I first became anxious I was convinced it was peri because of all the other symptoms. I went to newsome health who put me on utrogestan and Estrogel. At one point they tried me on large amounts of cyclogest (1600!) instead of utrogestan as a number of years ago a study suggested it possibly helped PMDD but i was all over the place.
I truly believe peri kicked off my anxiety but I wonder now if the anxiety is there because everything then fell apart.
Thanks for the info on the testing. I’m thinking I might come off the pill and then try to see what my baseline is.
Title: Re: HRT not working
Post by: joziel on March 01, 2025, 10:06:03 PM
So you never came off the pill, even when on the utrogestan and gel from Newson Health? What is the name of the pill you're on?
Title: Re: HRT not working
Post by: Turtle45 on March 03, 2025, 09:58:08 PM
No I’ve only been on the pill for 7 months. I wasn’t on it before. I tried it for a short while at 18 but stopped because I put on so much weight.
And today after nearly a year of no period it’s come back even though still taking pill at the moment. It’s called noriday

I’m all over the place with no idea what is going on!
Title: Re: HRT not working
Post by: joziel on March 04, 2025, 07:49:48 PM
Well the pill is going to complicate a lot of things. I mean, when I went on desogestrel, I bled slowly with dark blood for probably about 6 months or so, then the bleeding completely stopped. When I took levonorgestrel for the second time, I couldn't stop bleeding after an entire year on it and had to stop and switch to desogestrel.

If you are on Noriday which is norethisterone, you are not going to cycle properly anyway. It will stop ovulation in most (not all) cases and it will thin the uterine lining and cause erratic bleeding for a lot of women. That is what POPs do.

These are not proper periods or cycles and they can't be used to time taking utrogestan. They are break-through bleeds caused by your uterine lining being thinned as a result of a synthetic progestin. Unless you are on Noriday for some explicit reason, like contraception, I can't see why to keep taking it....
Title: Re: HRT not working
Post by: Turtle45 on March 04, 2025, 09:24:52 PM
@joziel you are so knowledgable and I can’t thank you enough for your advice. I honestly feel completely blind with my drs here who are absolutely no help. Like I’ve been dropped off a cliff.
I pretty much want to start again as it is all such a mess. I’d like know where my cycle is at for starters and if I even have one!  I think  I am going to stop the pill and speak to someone about my options. Thanks again!
Title: Re: HRT not working
Post by: joziel on March 05, 2025, 12:09:14 PM
You won't necessarily know where your cycle is or if you even have one, if you are on HRT. Taking estrogen causes a build up of uterine lining and (dependent on the dose you take and the dose of utrogestan) you may or may not have a bleed.

For eg, Dr Felice Gersh (who has some interesting ideas) believes that we should take enough estrogen to have a bleed when we stop utrogestan, because really we need that kind of dose for best health benefits in other ways. As in - if it is not enough estrogen to cause growth factors which proliferate the lining of the uterus, it is also not enough to cause growth factors or best beneficial effects in other ways.

Which is all to say - HRT itself (at decent dosages) causes bleeding, but hopefully scheduled bleeding when you stop the utrogestan. That doesn't mean it's your 'cycle'. You probably need to let go of the idea of a 'cycle' because you are entering peri-menopause and menopause and there is no reason to need to know this or to use this info in any useful way.

What you do need, is to be able to schedule a bleed. If I were you, I would stop the progestin and stick to HRT only and use it sequentially until I could coordinate it with what my body was trying to do.
Title: Re: HRT not working
Post by: Turtle45 on March 28, 2025, 12:36:00 PM
Hi Joziel,  I’ve changed to utrogestan and had an incredibly heavy bleed. First one since October.
I’ve taken another blood test and it said exactly the same. High estrogen of over 1000 and progesterone under 1.  I’m now wondering about estrogen dominance or maybe I’m not absorbing progesterone or what it could be but I have no idea how to find out. Any thoughts?
Title: Re: HRT not working
Post by: joziel on March 31, 2025, 04:08:45 PM
How much estrogen are you on? I've looked back through posts here and can't see you mention that anywhere.

If your estrogen truly is over 1000 on 2 different tests, if these were venous draws (finger pricks are not reliable) and you are sure this can't be due to contamination (you are not taking from an arm where you also spread gel for eg), then you should reduce your estrogen dose slightly. But only down one click before you test again - don't overreact and reduce by loads. Even being around 800 is fine. Some women really do need to be around 1000 to feel okay and if you need that, then that's okay too - but you might not need it.

With the progesterone being around 1, are you taking it orally? Because it's really not absorbed well orally at all. You need what sounds like A LOT MORE progesterone. Join the FB group called 'Bio-identical Hormone Replacement Therapy'. It has some flowers as the icon for the group. It's the best group on HRT that I know of. Don't be put off by the fact that they are mostly using injections. They use the same utrogestan as UK and Europe. And you can convert levels they mention from pg to our pmol using if you google estrogen conversion etc etc. You will get calculators up.

ANYWAY - point being, to get levels up of progesterone to manage higher estrogen levels, you really need to dose the progesterone. I take 300mg at night and 200mg in the morning vaginally (which absorbs much better than orally) and at the moment, sequentially (day 15-26). I am testing on this dosage next week, but on 300mg at night only I was barely scraping in at the recommended level and, as my estrogen level is quite high, I really want the progesterone to be higher as well to balance that out. It sounds to me like you need a LOT more progesterone.

Forget about 'estrogen dominance' it doesn't exist. There's no such thing, just progesterone deficiency.
Title: Re: HRT not working
Post by: Furyan on April 04, 2025, 10:29:34 AM

ANYWAY - point being, to get levels up of progesterone to manage higher estrogen levels, you really need to dose the progesterone. I take 300mg at night and 200mg in the morning vaginally (which absorbs much better than orally) and at the moment, sequentially (day 15-26). I am testing on this dosage next week, but on 300mg at night only I was barely scraping in at the recommended level and, as my estrogen level is quite high, I really want the progesterone to be higher as well to balance that out. It sounds to me like you need a LOT more progesterone.

Forget about 'estrogen dominance' it doesn't exist. There's no such thing, just progesterone deficiency.

Hi Joziel - You sound better compared to where I’ve known you to be and I’ve also read a couple of your recent posts about cortisol, which sound similar to my issue. Primarily I’m working on normalising my spiky cortisol using Seriphos and Relora which helps but I’m now wondering recently whether the raised cortisol might be because my sex hormones are too low for my needs. Like you, I tried no, low and now moderate HRT (.70 patch equiv) and my cortisol is spiking like mad if it were not for those supplements.

I know that too low sex hormones can be a stressor and therefore cortisol spiker so I’m tentatively thinking of increasing HRT.

Just wondering about your higher progesterone dose. Does it cause you additional symptoms? I tend to get very painful breasts past 250mg but I know I would have to increase it if I trial an increase of oestrogen.
So do/did you have issues with increasing and how did you deal with?
Hope that makes sense x
Title: Re: HRT not working
Post by: Furyan on April 04, 2025, 11:40:37 AM
Thanks for the responses.  It’s nice just to not feel alone. I have always struggled with my hormones having PMDD most of my life but I started to get the low mood and sobbing everyday rather than cyclically. The. The anxiety kicked in.
 I also had sweats, brain fog, bladder issues, tinnitus and a range of other things. I’ve had lots of tests and they haven’t shown anything.
There were other factors affecting me emotionally but I struggle to believe I went from being really good at my job and having a friendly, confident  personality to  the other end of the spectrum without it being to do with my hormones.

Hi Starfish - sorry to hear that you’re struggling with the anxiety and the other stuff which has also ramped up for me over the past year or so since I ‘crashed’. Turns out for me that my cortisol has got so dysregulated that it’s impacted on EVERYTHING and causing nothing short of havoc on the body. But it has got me thinking about what Joziel says about trialling an increase in HRT. It’s the only thing I briefly tried and felt notably better for it but, as I didn’t balance it right (or even wait for it to settle) I had other symptoms so I backed down, which made me regress. That was months ago and my cortisol is now spiking even more! I know GPs are ok for us to play with our doses a little but I’m nervous about making things worse if I increase so I’d ideally do this  under specialist supervision - very expensive though, but it might be something you consider.
Title: Re: HRT not working
Post by: joziel on April 05, 2025, 10:14:45 AM
Hi Furyan -

Yes, I'm better than where I have been - but I'm by no means perfect. At the moment I'm going through a bout of going backwards slightly and finding it difficult to fall asleep - I tend to be in a light patchy sleep for several hours, then I wake fully around 2am because I've had enough of it - and I take double doses of melatonin, l-theanine and apigenin. That usually does it and I can sleep okay, although I don't really feel rested in the mornings.

Like you, I think this can be cortisol related. The inner tremors and buzzing in my feet are the main reason I can't quite relax and sleep and I just startle and feel I'm on high alert. I also take Seriphos, zinc and ashwaganda as well as magnesium. I take that lot around 8pm. I've tried Relora in the past as well. I've done saliva cortisol tests and they come back high at night, when I'm supposed to be going to sleep... I do think this is some kind of panic state I get into due to my body or brain thinking my E is low. BUT - WHY DOES IT DO THIS?!!? Considering I've been on desogestrel POP for 10 years before starting HRT to manage my endo - and my E would have been lower on that. (I never bled for almost those 10 years.)

Since all this got much better for a while and has come back a bit, I'm wondering if my E has dropped again. I tested on 200mcg patches and 6 pumps of gel and it was around 890pmol (that was when I felt good) but then I tested again a month or so later and it was 650pmol - which is when things started to backslide a bit. Why I dropped that much, I'm not sure.

It doesn't help that with the Estradot shortage, my dose has had to be made up of loads of 25 patches. And they all get a grimy ring around them, so I reckon I absorb less from 4x 25 patches than from one x 100 patch, for eg. Because there's just one grimy ring around the 100 and there's one around every 25 patch! I tried to compensate for this by increasing my dose. I'm supposed to be on 200mcg patches plus 6 pumps of gel but I've increased the patches up to 300mcg. (I always put my order in about 1 week early so have accumulated excess 25 patches now!) I can't increase the gel because I don't absorb more than 6 pumps. Which is a shame as I seem to have about 15 extra bottles of it now  ;D  Anyway, it doesn't seem to have helped.

I am doing another home Tasso test this coming Wednesday so will see what my E levels are. I really wish we had access to injections in this country as this is just ridiculous now, trying to get enough E into me. I don't really want to use oral due to increased clot risks and also it increases estrone (inflammatory estrogen) and transdermal doesn't - plus if you ever have surgery you have to stop oral, and can continue transdermal.

Yes, I think increasing your HRT to get to 800-1000 is a good thing to trial. I have no probs with taking P, whatever route. The main reason I take it vaginally is because the UK blood tests can't accurately test levels if you take it orally due to the metabolites. And I want to be sure I'm getting high enough for endometrial protection, on this kind of E dose. Have you tried taking it vaginally? It might not cause the same painful boob issues that way....

Title: Re: HRT not working
Post by: Furyan on April 06, 2025, 12:12:58 PM
Hi Furyan -

Yes, I'm better than where I have been - but I'm by no means perfect. At the moment I'm going through a bout of going backwards slightly and finding it difficult to fall asleep - I tend to be in a light patchy sleep for several hours, then I wake fully around 2am because I've had enough of it - and I take double doses of melatonin, l-theanine and apigenin. That usually does it and I can sleep okay, although I don't really feel rested in the mornings.

Like you, I think this can be cortisol related. The inner tremors and buzzing in my feet are the main reason I can't quite relax and sleep and I just startle and feel I'm on high alert. I also take Seriphos, zinc and ashwaganda as well as magnesium. I take that lot around 8pm. I've tried Relora in the past as well. I've done saliva cortisol tests and they come back high at night, when I'm supposed to be going to sleep... I do think this is some kind of panic state I get into due to my body or brain thinking my E is low. BUT - WHY DOES IT DO THIS?!!? Considering I've been on desogestrel POP for 10 years before starting HRT to manage my endo - and my E would have been lower on that. (I never bled for almost those 10 years.)

Since all this got much better for a while and has come back a bit, I'm wondering if my E has dropped again. I tested on 200mcg patches and 6 pumps of gel and it was around 890pmol (that was when I felt good) but then I tested again a month or so later and it was 650pmol - which is when things started to backslide a bit. Why I dropped that much, I'm not sure.

It doesn't help that with the Estradot shortage, my dose has had to be made up of loads of 25 patches. And they all get a grimy ring around them, so I reckon I absorb less from 4x 25 patches than from one x 100 patch, for eg. Because there's just one grimy ring around the 100 and there's one around every 25 patch! I tried to compensate for this by increasing my dose. I'm supposed to be on 200mcg patches plus 6 pumps of gel but I've increased the patches up to 300mcg. (I always put my order in about 1 week early so have accumulated excess 25 patches now!) I can't increase the gel because I don't absorb more than 6 pumps. Which is a shame as I seem to have about 15 extra bottles of it now  ;D  Anyway, it doesn't seem to have helped.

I am doing another home Tasso test this coming Wednesday so will see what my E levels are. I really wish we had access to injections in this country as this is just ridiculous now, trying to get enough E into me. I don't really want to use oral due to increased clot risks and also it increases estrone (inflammatory estrogen) and transdermal doesn't - plus if you ever have surgery you have to stop oral, and can continue transdermal.

Yes, I think increasing your HRT to get to 800-1000 is a good thing to trial. I have no probs with taking P, whatever route. The main reason I take it vaginally is because the UK blood tests can't accurately test levels if you take it orally due to the metabolites. And I want to be sure I'm getting high enough for endometrial protection, on this kind of E dose. Have you tried taking it vaginally? It might not cause the same painful boob issues that way....

Hey Joziel - sounds like at least you know there is a key player in town aka Cortisol! I’ve discovered that cortisol imbalances, especially when high, trump everything so NOTHING is likely to work unless that fire is tamed. High cortisol can also interfere with absorption so this could be influencing why you’re not absorbing the patches too well, so my guess is your primary focus would be to regulate your cortisol, which I know you are trying hard to do.

I upped my patch the other night to a full 75 and I can’t begin to tell you the relief I felt within about an hour! There were a couple very minor anxiety wobbles for sure but generally a positive change. Today I upped it again by adding 1/4 of a 25 patch, which totals an 81.25 patch equivalent! I’ve learned that any change - good or bad - can cause upheaval like hot flushes, so I aim to stick with this dose for couple weeks to see how it settles. Think I need to stay away from oestrogen dominant sites while I’m experimenting though!  ;D
I should say that my bloods on a full 75 patch a couple months ago were 255, which I thought would be higher on that dose…

Re: progesterone, I’m increasing to 300mg Utro since I’ve upped the patch as my lining was recently 5mm - 200 vaginal in the morning and 100 oral at night. Unsure about the breast tenderness, maybe give it time to see if it settles? I know some ladies here say similar things about this.
Title: Re: HRT not working
Post by: joziel on April 07, 2025, 11:29:28 AM
Yes, when you start to increase the E and see the benefits, it gives you much more confidence to keep going up. That's what happened to me. I just have to be careful now I'm towards to top of where I want to be, and have to test more often.

I am sleeping better since I started back on P again 2 days ago (vaginally). Some cycles I sleep fine on the E only phase, other cycles I don't. I have no idea why. Still, it is weird to wake in the night and feel that I am tremoring in my sleep. It's been about 3 years since all this started and I can confidently say I've NEVER HAD a single night with NO tremors. Just nights where they are mild and I can sleep through mostly.

And yes getting cortisol down is very important. But I think cortisol goes up due to low E - and it might be that the brain needs higher levels of E than the rest of the body, for some women with these neuro symptoms.
Title: Re: HRT not working
Post by: Furyan on April 09, 2025, 09:52:12 AM
Yes, when you start to increase the E and see the benefits, it gives you much more confidence to keep going up. That's what happened to me. I just have to be careful now I'm towards to top of where I want to be, and have to test more often.

I am sleeping better since I started back on P again 2 days ago (vaginally). Some cycles I sleep fine on the E only phase, other cycles I don't. I have no idea why. Still, it is weird to wake in the night and feel that I am tremoring in my sleep. It's been about 3 years since all this started and I can confidently say I've NEVER HAD a single night with NO tremors. Just nights where they are mild and I can sleep through mostly.

And yes getting cortisol down is very important. But I think cortisol goes up due to low E - and it might be that the brain needs higher levels of E than the rest of the body, for some women with these neuro symptoms.

I’ve just switched to gel and splitting the dose and it seems it works better to alleviate some symptoms, though not completely. As 3 pumps feels better than the 75 patch, I’m starting to figure that maybe I wasn’t absorbing the patch well, something that has crossed my mind over recent months. My guess is that I may have to increase a little more but I’ll see how this change settles first as don’t want to do too many changes at once. There may be some truth in the idea that less than optimal levels of sex hormones causes cortisol dysregulation - including not taking enough HRT for our current needs…

Thanks for your thoughts on this one Joziel x
Title: Re: HRT not working
Post by: joziel on April 10, 2025, 09:44:03 PM
Good luck. I do think, if your symptoms are during the night, putting some gel on a few hours before bed (if you can) helps. It takes about 2-4 hours to peak in the blood I think.

It is a faff to go upstairs and do that in the evening but I usually just put shorts on and then I walk around and do stuff whilst I wait for it to dry....
Title: Re: HRT not working
Post by: Furyan on April 11, 2025, 09:35:37 AM
Good luck. I do think, if your symptoms are during the night, putting some gel on a few hours before bed (if you can) helps. It takes about 2-4 hours to peak in the blood I think.

It is a faff to go upstairs and do that in the evening but I usually just put shorts on and then I walk around and do stuff whilst I wait for it to dry....

Thanks Joziel, I feel it’s a faff switching to gel period as it’s yet another alarm to manage but, hey, needs must to get a break with symptom relief! It’s also just dawned on me that I possibly need to tweak my T3 - been on same dose despite upping my oestrogen last year and I noticed that’s when my body got into a state of flux rather than settling properly. My thyroid doc and a few ladies here said it’s quite usual to have to increase thyroid meds when you increase oestrogen and I suspect there’s also this to consider. This could also be dysregulating the cortisol a bit. Never bloody ends does it…  :bang:
Title: Re: HRT not working
Post by: joziel on April 11, 2025, 12:17:23 PM
Yes, I have to be careful with the T3 as well. I'm on 30mcg now and on 75mcg T4. I'm waiting for results for bloods I did a couple of days ago, but it'll be 3 weeks because I tested rT3 again (having increased T4 dosage).

I'm also about to go to my NHS GP in a couple of weeks, to discuss how/why I did not regain previous function when I came off thyroid meds and whether I need to have further tests done on my pituitary and other pituitary hormones. If I felt absolutely amazing and symptom-free, I probably wouldn't bother with this - but given the ongoing night time symptoms, it's probably a good idea.
Title: Re: HRT not working
Post by: Fizwhizz on July 17, 2025, 06:46:13 AM
Hello ladies,

I’ve been reading back and I’m in the same boat. HRT works for me initially then stops. I strongly suspect I’m not being prescribed enough, I’m a poor at absorbing. I’ve tried patches and gel and have currently fallen into another black hole. My last blood tests were 230pmol oestrogen and I knew my mood was slipping. I have Hashimotos too so pay privately for blood tests, meds and consultations. The GP I see wanted to go low and slow with the HRT but I’m really struggling to function currently. At my last appointment a few weeks ago we agreed I could experiment. I have various Estradot patches and gel. I’m wanting to try the patches again as more convenient. I currently have 3 25mcg Estradot on and I used I pump of gel yesterday. I feel down, unmotivated, tearful, can’t concentrate etc. I’m taking 200 progesterone plus testosterone which I don’t absorb either. It’s patch change day today and just wondering whether to up it to 125mcg or 150mcg and if I need more progesterone then? I’m post menopausal. Thanks
Title: Re: HRT not working
Post by: joziel on July 18, 2025, 01:54:42 PM
I wouldn't recommend going immediately from 75mcg to 150mcg(!!). Even if you are not waiting 3 months between increases, you should give it 1-2 weeks at least.

And yes, current advice is 300mg progesterone if you are over I think 75mcg.

Aim to get your estrogen to 400pmol and see how you feel then.
Title: Re: HRT not working
Post by: Fizwhizz on July 19, 2025, 03:15:10 PM
I wouldn't recommend going immediately from 75mcg to 150mcg(!!). Even if you are not waiting 3 months between increases, you should give it 1-2 weeks at least.

And yes, current advice is 300mg progesterone if you are over I think 75mcg.

Aim to get your estrogen to 400pmol and see how you feel then.

Thanks Joziel,

I went up to 125 mcg via patches alone. It’s hard to be patient when I swing from functioning to an absolute and not functioning mess but if I’m too quick chopping and changing I know I might miss the HRT sweet spot and will further mess up my thyroid too.

I’m not feeling so much better on 125 of patches but I don’t feel any worse.

I have been on this merry go round of trying to get HRT to work in a suitable and sustainable way for around 6 years and haven’t found my optimal yet.

I’m not sure how much oestrogen I might need to get to the dizzy heights of 400pmol. Thanks for the info on progesterone. I’ll keep trying to find a regime that works.
Title: Re: HRT not working
Post by: joziel on July 19, 2025, 09:37:03 PM
I needed about 200mcg to get there, if that helps (2x 100 patches).

Then I went higher, to get up to 850pmol. But now reducing slowly on the gel and feeling no worse and wondering if I was actually absorbing any of that gel anyway....
Title: Re: HRT not working
Post by: Fizwhizz on July 19, 2025, 09:59:33 PM
I needed about 200mcg to get there, if that helps (2x 100 patches).

Then I went higher, to get up to 850pmol. But now reducing slowly on the gel and feeling no worse and wondering if I was actually absorbing any of that gel anyway....

Thanks Joziel,

That’s useful to know re the 200mcg.

I know from blood tests that I have none of my own hormones now and so I think I’m likely under medicated with the HRT. The thyroid seems more stable.

I shall try to be a bit more patient with things.

I’m in the same boat with the gel! Initially I was absorbing it better than the patches but then I just seemed to stop absorbing it 🤷‍♀️ x
Title: Re: HRT not working
Post by: joziel on July 20, 2025, 09:41:59 AM
I got up to about 400pmol with 6 pumps of gel. Then we tried to get higher, but even on 12 pumps of gel I was still around 400pmol (plus it took forever to put on and dry!!).

So I went back to 6 pumps, as that seemed to be the max I could absorb, and we started adding in patches instead. This worked. Now I don't know if I'm really getting anything from the gel. I've now reduced to 3 pumps (from 6) and feel just the same. I think I might even be sleeping better, although that could be because my thyroid is getting optimised...

Anyway, my plan is to wean off the gel totally as long as my symptoms don't get worse and to re-test and see what I'm getting from 300mcg patches....
Title: Re: HRT not working
Post by: Fizwhizz on July 21, 2025, 02:53:11 PM
I got up to about 400pmol with 6 pumps of gel. Then we tried to get higher, but even on 12 pumps of gel I was still around 400pmol (plus it took forever to put on and dry!!).

So I went back to 6 pumps, as that seemed to be the max I could absorb, and we started adding in patches instead. This worked. Now I don't know if I'm really getting anything from the gel. I've now reduced to 3 pumps (from 6) and feel just the same. I think I might even be sleeping better, although that could be because my thyroid is getting optimised...

Anyway, my plan is to wean off the gel totally as long as my symptoms don't get worse and to re-test and see what I'm getting from 300mcg patches....

It really is a rollercoaster Joziel. 12 pumps of gel is a lot to apply and dry, 6 is still quite a lot! I find anything more than 2 pumps of gel a palaver as I’m using testosterone too so application sites become limited.

Initially I absorbed the patches, I was ok on 25mcg then I had a box that refused to stick then my levels dropped even after upping to 50mcg so went on the gel. Similar story, initially felt ok on 2 pumps though I was prescribed 3, then didn’t so upped to 3 then 4 with no change.

I haven’t had many symptoms like hot flushes, sweats etc it’s more mental ones my mood and energy crash and I feel really low and lethargic and just can’t function.

My thyroid was ok at my last appointment and blood check a couple of weeks ago but I know as I up the oestrogen that might wobble too. It’s costing a small fortune in blood tests, consults and meds and frustrating to feel ok for a bit then plummet. It’s hard to do the self care bit when feeling depressed too.

Do you have physical symptoms still on your current regime or is it similar to me and you are trying to get your mood and energy more stable?

Title: Re: HRT not working
Post by: joziel on July 22, 2025, 11:08:34 PM
I'm the best I've been since all this started about 3.5 years ago. The symptoms I've been battling are mainly at night. My body can get into a fight or flight state where my sympathetic nervous system is ramped up. But it's gone from heart beating so fast and hard I can hear it and inner tremors which make the bed shake, to a tiny tingling in my feet and sometimes in my sleep I get a raised heart rate (much less raised) about 2 hrs after I fall asleep.

So - not normal yet, but nothing like it was. I still have bad nights sometimes. Last night I went to bed at 1.30am, which was silly but I've got a huge project due and I'm self employed. Then I woke at 4.30am - I think because I kept dreaming the same thing and felt like I couldn't get out of it and was bored of it (does anyone else do that?!) and then I couldn't go back to sleep. I was awake 4.30-7am, then I took my thyroid meds and fell asleep until 9am.

I am wondering if my thyroid is still a little low and I need a bit more T4. But I've just had bloods done and I'm waiting for the results so we'll see...