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[Shannonplussed]

I know this is absolutely muddying the waters, but what I’m doing seems to be working. I’m using a Mirena and Estrogel. I’ve tried all doses of Estrogel from zero to 4 pumps (the 4 pumps was with the intention of switching my own hormones off). I’m 44 and several FSH tests have declared me to be post-menopausal, but because of taking HRT I can’t “officially” be 1 year bleed-freee (let alone 2!). I’m surprised to find that I feel better on the lower dose of Estrogel. So many people here say oh you’re young so with early menopause you need more estrogen. I don’t think that’s true across the board. I think many of my awful symptoms before diagnosis (I also had every test under the sun), in retrospect, were from high estrogen rather than low. I did have bouts of low estrogen when peri menopausal (vaginal dryness and painful sex) but they were followed by high estrogen symptoms. The classic roller coaster.

I’m now taking the approach of working with what my body is doing rather than fighting against it. The Mirena covers the progesterone side so I’m free to play with the estrogen side. I really am surprised to find that for me less is more. (Lower weight, less hunger, less bloat, more sleep, less feeling on edge.) When I have days where I’m feeling jittery, then I’ve stopped for a couple of days. The histamine info has been helpful and rings true with me! Of course this means occasional spotting but I’ll take it.

Also worth noting, I had stopped my sertraline because I felt I was being overserved. Feeling jittery and like a box of frogs. In retrospect, I think it was too much estrogen. I can relate to all of the awful, awful mood instability, rage and irritability that you’ve experienced as well. I didn’t want to have to go back to sertraline but my mental health, work and family life were really suffering, and I know the drug works for me. I think I’ll be on it for life at this point. And that’s okay—I’m much more pleasant and I like myself so much more on it.

Oh also because I’ve had vaginal dryness before with the Mirena, I use a local treatment about once a week (Premarin cream; I’m in Canada). Even if I don’t have any estrogel, I can still use the local cream.

I was in such a rush to get on HRT with my early menopause diagnosis but it’s taken me 2 years to realize all this. Trial and error takes ages!

[Floo36]

Hi Shannonplussed

I have read on here a few times where ladies have had worsening of symptoms when they increased the dose of Estrogen, so it’s interesting to hear you say it too.  I keep thinking the same which is why I think about stopping and starting again but I’m too scared so I have dropped my dose instead and I will wait a few weeks and see if there’s any change.  It’s the hot flushes and sweats that are confusing me because they appeared when I went up to 2 sprays and were even worse on 4 sprays,  it may be a coincidence though and I may not even be absorbing the spray.  It’s so confusing I have all the symptoms of low Estrogen. 

It’s great to hear that you worked it out after lots of trial and error. 

[RebJT]

Hi Girls

Day 1 of pack two and I have a 5 out of 5 level of histamine today, which I think is my own estrogen spiking.  I've read your posts elsewhere Shannon and think you are on to something, the received wisdom in gynaecology is women our age complaining of symptoms must be suffering low estogen (and I'd agree I am at some points in my cycle) but what depletes first in women our age is progesterone, so part of the issue is we have too much estrogen *relative to progresterone* ie estrogen dominance.  I know this through testing that my worst histamine days are my high estrogen days, and once you are in that washing machine it gets nasty really quickly!  We also have estrogen spikes as the ovaries go through the death rattle of failing fertility.  There's a canadian gynae who writes about this (but I am not sure she's right on the cure) that might interest folks: https://www.cemcor.ubc.ca/resources/life-phases/perimenopause

I've always thought I was progesterone sensitive, or intolerant as I've never get on with phased utrogestan (and felt dreadful on the mini pill etc) but after having had a really good month (relatively speaking) on Qlaira, which is 23 days of prog, I'm starting to wonder whether what the issue is the DROPS in progesterone, and whether I do better on a steady dose.  My other option with all this was Jaydess (mini mirena) but I was too scared to try because a) I've never had kids and I had an agonising attempted mirena fitting years ago when I screamed the practice down and nearly crushed the bones in the nurse's hand - it was so painful they had to give up (!!) and b) fear about progesterone sensitivity and lack of control on stopping it if it didn't suit me. 

However, last month at period start was better than this one (I have cheated a bit on my low histamine diet this month as I've felt so much better so that probably didn't help) and I'm wondering if it's because I've just had two days of estrogen only pills, and two days of placebo pills, causing a steep drop in progesterone?  I'm thinking I might take Qlaira back to back and skip the dummy pills, as my 'vibrations' today (as I call them) are really bad.  Progesterone is mast cell calming, estrogen is mast cell aggravating.

It's so confusing, and I wish I could know what's going on in my body, as it all feels like guess work sometimes.  Anyway, despite feeling worse than last month at day 28, I'm feeling no worse than I usually do so that's a blessing so will plough on with pack two.  Oh and the five pounds I've gained has come off again, so does look like that was water weight, so I'm pleased about that.  I've also had virtually no bleed at pack end (spotted through the month, hoping that'll taper off) so I'm also not flushing lots of lovely iron down the loo like I normally do either, which is a miracle!

Reb
x

[Gilla999]

Reb just to say I totally agree with you on the "it feels like guess work". I feel so strongly after the last 12 months that women should be able to test what their hormone levels are in an easily, accessible way. Much like a diabetic can easily test their blood sugar, or you can test your blood pressure. The blood tests that even the best gynaes do only show you one moment in time, they aren't showing the fluctuations at the root of the problem in Peri. When I mentioned this to the "menopause expert" I paid to see, she replied "women's hormones fluctuate all the time, that's just normal" and I felt very dismissed. At the very least if we were able to test our hormones daily ourselves, we'd be able to count them out as the cause!

[RebJT]

Gilla

If this was happening to men, they'd have figured this out already!!  It's why there's still no male pill, too many side effects (haha).  I totally agree, a little monitor would be a god send as then at least you could learn your symptoms.  My symptoms are cyclical, day 14 and just before and as my period starts are the worst.  First two weeks of cycle I feel great, second two weeks not so great.  If I knew what was causing what, that'd go a long way to 'cracking the code' as it were.  You'd know your target levels where you feel good, and your ratios.  It's not rocket science. 

The reason I go without other things and go private is I'm simply not prepared to be spoken to like that anymore.  Plus I lived in Greece for a long time, when I explained to friends there that you have to get around a paltry family doctor before you can have any specialist care, they were absolutely appalled, it's a ridiculous system. I had very very very serious thyroid disease, it went undiagnosed for ten years (they truly very nearly killed me) and then the cure was even worse. Oh and then they blamed me, the LIES they put on my notes!! The last decade, I'm only not an invalid as I just decided these barbarians weren't in charge of my health any more.  It's a disgrace really.  It's not a 'health' service, it's a sickness service.  Anyway, rant over ..

I just wish they'd hurry up and develop one of those Star Trek scanners, or like they have on the film 'Aliens' - you just hop in and it scans your whole system, knows your DNA and figures it out!!  Alas, still science fiction ...

PS do you know, is Qlaira 'low dose' estrogen compared to other pills, from your trawl the other day?  Not specifics, just roughly?

Ta

Reb
x

[Uptick]

Hi ladies, just came across this supply notification on contraceptives, including Qlaira.

https://cached.offlinehbpl.hbpl.co.uk/NewsAttachments/2MM/MSN_2020_043_U3-Oral-Contraceptive-tablets.pdf

 

[CrispyChick]

Hi Reb, I've got a random question for you  since you know all about histamine.

So, I've akways been on fexofenadine for allergic rhinitis. But I tried coming off it when I had my initial dizziness etc... Which I now know was hormones.

However, from May - Oct I suffered a weird nose feeling most days, that often triggered a headache. It was a feeling like someone had punched me deep behind my nose. Anyway, I eventually concluded it was the steroid nose spray which I was taking for my allergies that was also causing it.

I also stopped my pill trial around the same time.

Fast forward 3 months of no pill, was OK in nose dept and 2 months of microgynon - no problem. Until now!!! Had migraine last night and today and now I am left with the nose feeling.

Could the pill be causing it??? A quick Google tells, me the pill can cause congestion and also thickens nose mucus...

I can't for the life of me remember when I last took my antihistamines. I was avoiding them as they're known to dry your nose and the feeling is quite dry.

Do you think the pill could be increasing my histamine??? I have plenty fexofenadine in the cupboard, but I don't want to make my nose worse. Currently have few allergic symptoms... So not needing it for that...

Thanks so much x

[CrispyChick]

Ah. Scrap that. I just found my old diary entries. I stopped the antihistamines in June to try and deal with the nose issue...

Appreciate your view on whether pill increases histamine though??? It certainly feels like the combined pill causes this nose issue for me, which would mean it's the estrogen. As I was OK on the mini pill, in the nose respect!

Never ending...

[RebJT]

Estrogen could cause a histamine issue or aggravate one, as estrogen tells the mast cells to realease more histamine, and histamine tells your ovaries to make more estrogen, causing the wheel of death.  Obvs in peri we are getting estrogen surges anyway, and that seems to be going on for you along with taking the pill ...

I had to come off hormones, sort the histamine and start again.  Although as I said the other day, there's also a link with iron and histamine and I've had - overall - a massive improvement in histamine symptoms and severity since the iron infusion.

If you google link between estrogen and histamine, you should find some useful stuff.  That said progesterone is mast cells stabilising, so in theory should calm things down.

I've been thinking about it today, I always feel rubbish day 28 / day 1 so today is no exception, but I had been sooooo much better this last month overall, so I think it's the placebo pill days and the drop in hormones that's also part of it for me, going to try back to back this month if gynae says it's OK.

Reb
x

[Gilla999]

Reb I have literally had the Star Trek scanner thought to myself sooooo many times throughout out all of this!

That sounds awful over your thyroid, thank God you managed to get proper treatment in the end!

On Qlairna, yes - my understanding is that whilst it's not low when you look at the mg vs other pills, in terms of strength ethinyl estriadol is significantly stronger than either estridaol valerate (Qlaira) or estriadol hemihydrate (Zoely). Here was one link I found:

https://obgyn.onlinelibrary.wiley.com/doi/abs/10.3109/00016348209156956

and here's an excerpt from a similar paper which quotes the above:

"Measurement of a highly estrogen-inducible plasma protein (the pregnancy zone protein/pregnancy-associated alpha 2-globulin (PZP/PAα2 G)) in postmenopausal women suggests that ethinyl estradiol has a potency 500 times more than 17-β estradiol and 650 times more than estradiol valerate (. Estimates from the pharmaceutical company (Solvay Healthcare Ltd – personal communication), however, suggest that 1 mcg ethinyl estradiol is equivalent to 100–250 mcg 17-β estradiol. "

17-B estriadol is another name for estriadol hemihydrate (Zoely) I believe.

I would also back this up personally that since starting Yasmin my boobs have gone back to being swollen and painful which is my classic estrogen dominance symptom. It's not as bad as when I started Zoely or HRT at first, but it's definitely there since switching to Yasmin, so there must be an increase in Estrogen that's happened.

Hope this helps - again it's just what I've found and someone like Nick Panay may say differently... xx

[RebJT]

Thanks Gilla

How are you getting on apart from the sore boobs?  Is your rationale that you want to shut your own hormones down and need a bigger / more potent dose of hormones to do it?  Be interested to hear how you get on, as my hormones are obvs still surging after the jittery couple of days I've had.

And thanks, women's healthcare makes me very angry, it's not just that it's not good enough, we're not believed, and we're so often written off as 'emotional' when in fact we are suffering and ill.  This is why I am extremely careful what I tell my doctor, once you have anything that suggests you are an hysteric or vexatious on your notes, forget it.  That said, here and there I've met some lovely doctors who've gone the extra mile.  Private doesn't mean better either, I just tend to do my research. I can attest that Nick Panay's name on a letterhead focuses a few minds at the GP practice!! Lol.  My sis in law now sees his team too, she had a surgical meno after a total hysterectomy following four caesarians and then adhesions and all sorts of misery.  Her NHS gynae put her on two pumps of estrogel!! She was 42 with five young kids.  His answer to her MIA libido, weight gain and exhaustion?  Get your husband to take you out for a nice dinner.  She should have the letter from Mr Panay's team framed, suffice to say she's now on 6 - 8 pumps and some testosterone!  All on the NHS :-)  They properly jumped to attention (although her GP did ring her and shout for ten minutes about going private, and then rang her back and apologised and wrote the script!).

And thanks, that's super helpful, that makes sense, that explains why Qlaira and Zoely are Mg and the others are Mcg, all becomes clear.  It also suggests I probably wasn't imaginging it when I thought I'd read you could top up Qlaira and Zoely with estrogel, makes sense now too!

Let us know how you go with Yasmin, although I think my doc's logic for Qlaira was the dienogest to cut the bleeding, and the milder estrogen because of my histamine sensitivity (I've spotted this month but had no bleed at pack end, which with my iron woes is very good news, will scan again in a couple of months, but also hoping my endometrium is back to being negligible too) but I don't know whether it's strong enough to shut down my fluctuating hormones and sometimes my symptoms are so severe, I'd love for my renegade ovaries to be put to sleep! 

Reb
x

[Gilla999]

I'm fine so far with Yasmin - feel mildly yucky/sicky/tired, but it's mild. Certainly not what I recall it being like when I tried it in my 30s so it looks like Crispy is right about it being easier to switch from one Pill to another than start anew. Too early to tell if it helps with the original problem - I think I'll need to give it a couple of months.

Yes on my rationale - I don't understand the physiology of why (no one seems to be able to tell me) but my gut sense is that my body has become very sensitive to any drops in estrogen. Whether that's because it is fluctuating erratically or whether somehow my body has just become super sensitive to fluctuations, I don't really know or understand. My problems match the cycle that you've described exactly - all my symptoms were from day 21 to day 28, always. Then over the space of 6 months it grew to be from day 14 until day 1, so I was literally living half my life with horrific insomnia and night sweats. Then the first two weeks of every cycle I was totally fine - slept like a log, no night sweats, always great. It took me a year to make the connection and I'm so thankful I had always tracked my symptoms on my calendar so I was able to look back and realise (despite being told repeatedly by doctors that I was too young at 41 for "menopause" and that my hormones were fine).

It seems like some people are fine with the hormone "topping up" functionality of either HRT or Zoely/Qlaira, but whatever is going on with me has been so bad that I need to shut my own hormones off totally.

OMG that is awful about your sister in law!! What a joke. It makes me so angry how women (especially ones still in their 40s) are treated over Perimenopause. I would love to see Nick Panay but I think there's a 6 month waiting list 

[Floo36]

Hi ladies,

Well I did another blood test yesterday.  I planned an doing it on a day when I was really ill and terrified so it was really difficult going, my husband took me, it’s 1/2 mile from my house so I managed it but it was awful but so glad I did as the results really confirmed what I thought which is the depression / terror set in when my hormones drop too low for me.  The Estrogen level was 457pmol, my fluctuations are extreme, I feel ill every day but to varying degrees, with spikes which were in the thousands to the dips like yesterday. 

We can’t win I don’t think unless we can stop the fluctuations. 

[CrispyChick]

Hi ladies.

Glad to hear things are manageable for you Gilla. Yip, I do think you'll have a fair level of hormones in your body, but you're clearly increasing the estrogen now.

Reb, I totally recommend skipping the breaks, I can get significant mood changes etc after missing 1 pill.

So that's me week 9bof microgynon complete. I'm happy (for the first time) to report that my anger is abating. Yay!!! And I no longer seem to feel depressed in late afternoon. Woo hoo.

However, maybe with that clearing I focus on other things, but I've felt pretty dreadful. I'll discount last week as I'm non the wiser if it was covid jab side affects... But this week. Not good. I've felt nauseous and off. Had my first microgynon migraine yesterday and my nose now has the continuous blocked/punched behind the nose feeling... Which I had all summer.

Today I feel dreadfully fatigued avd a bit off... With the nose feeling.

So, I'm actually due nose surgery, so I called up to find out about my wait time as I would've had itast year ordinarily. Anyway, whilst I was on, I asked for my last iron readings. These were in June 2019.

She said iron was 18. I asked about ferritin. She said ferritin was 29.

So... I've read your article Reb and had a quick Google. Seems pretty low yeah? Perhaps she misread the iron one. How do I sort it myself??? How was yours identified if not by gp???

Many thanks, this forum is so helpful xx

P. S I'll just add that this was 1 1/2 years ago, at the same time my vit d level was found to be low avd I was told my b12 was normal. I had a very sore tongue. When I got my b12 level avd googled I found I was at the very bottom of an extensive range. Started supplenting. Never had sore tongue since. This was also the summer when I kept getting lightheaded and nearly fainting. This was all blamed on my low blood pressure...

[Gilla999]

Reb this is a bit off topic but you asked in an earlier message if I'd been tested for coeliac because of my tummy problems. I didn't pay much attention at the time but I found out a couple of days ago that a lot of the symptoms I'm having (not the hormonal symptoms like night sweats and insomnia - I mean other stuff) are classic coeliac symptoms. I'm waiting for an appointment with a doctor for a blood test but do you know anyone with it? I just wondered as you mentioned it. xx

Crispy I'm really sorry to hear you're not feeling great. Those iron readings definitely look low!! (I found my ferritin level int the end and it was 60 so I think I'm fine). Probably not connected but I've noticed that when I have my "episodes" of night sweats and insomnia I also get a blocked / punched nose feeling. I'm sleeping like an absolute log at the moment but this is what it's always like - and then suddenly something changes and I literally don't sleep for a week!