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Author Topic: HRT not working  (Read 16131 times)

Turtle45

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Re: HRT not working
« Reply #30 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!
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joziel

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Re: HRT not working
« Reply #31 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....
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Turtle45

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Re: HRT not working
« Reply #32 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!
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joziel

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Re: HRT not working
« Reply #33 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.
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Turtle45

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Re: HRT not working
« Reply #34 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?
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joziel

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Re: HRT not working
« Reply #35 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.
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Furyan

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Re: HRT not working
« Reply #36 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
« Last Edit: April 04, 2025, 11:30:59 AM by Furyan »
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Furyan

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Re: HRT not working
« Reply #37 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.
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joziel

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Re: HRT not working
« Reply #38 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....

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Furyan

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Re: HRT not working
« Reply #39 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.
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joziel

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Re: HRT not working
« Reply #40 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.
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Furyan

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Re: HRT not working
« Reply #41 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
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joziel

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Re: HRT not working
« Reply #42 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....
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Furyan

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Re: HRT not working
« Reply #43 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:
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joziel

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Re: HRT not working
« Reply #44 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.
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