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Author Topic: GP has prescribed Qlaira - Feeling scared and need encouragement!  (Read 92833 times)

RebJT

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #255 on: March 22, 2021, 06:02:18 PM »

Hey good stuff

Good idea to get tested but you do sound (and have sounded since we started conversing) like a woman with an iron problem.  Don't take what your GP says too seriously when you get your results, do your own research, The Iron Clinic have some good resources on their website too.  I feel dreadful, so wired and over revved.  I wish I knew what was causing it, is it too much of my own estrogen, is it a build up of progesterone, is it just the ups and downs of trying a new pill and I need to grit my teeth, is it progesterone intolerance??? WTAF is going on?  I hate this, so badly, it's ruining my life.

I very seriously need to work, I am so skint and in such a pickle.  Doesn't help that my partner's ex has gone beserk (again) and I'm in her sights, for no reason whatsoever than she enjoys making him miserable, and he's grumpy and anxious too.  So I'm anxious about that.

Reb
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CrispyChick

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #256 on: March 22, 2021, 06:41:53 PM »

Thanks Reb, yes I'll certainly research some more. I did read the notes on the iron clinic. Is that where you had your infusion??? I'm in Scotland so i do t think I'll be able to use them. But the solar tablets get good reviews!

So, let's see if we can help you. When you say so wired avd over revved do you mean jittery, shaky and anxious??? If so, I can tell you havd had horrific anxiety and jittery feelings since starting microgynon (it's the reason I stopped it at 6 weeks when trying it last year). However, that is now calming down. 9 weeks in...

I don't feel out of the woods yet, and I don't want to count my chickens, but as you know a lot of my early symptoms were horrific moods and low mood (the anxiety and jitters were terrible too, but more tolerable for me). I felt like giving up many a time... But everyone kept saying it should go... I've definitely turned a corner!!!! So 9 weeks is 3 full packs... I would've counted that as 3 months, but I'm not doing  ;D.. I'm counting 12 weeks. Then some people say they didn't feel benefit until 4 months...

Keep going. Make a plan - no breaks. Go into month 2 knowing that this is just a blip. It might be a reaction to the prog or the estrogen, or your own hormones still kicking off... But ultimately it doesn't matter as long as it does bog off. Madameovary was around loads more in her first few months... She seems to have settled... You can do this!!!!

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RebJT

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #257 on: March 22, 2021, 06:54:34 PM »

Thanks love

I'm not anxious, it's like a drunk a thousand cups of coffee feeling, so I'm cranky because I feel jacked up to the moon, my resting heart rate is 96 and my BP is high.  I'm stress intolerant and easily reactive, but not because of mood per se, but because I just feel so stressed I cant cope with any upset.  It's like a taut, stressed, foil on your fillings feeling on the inside, I feel like I have high adrenaline.  I also have high histamine (by my symptoms which I know very well by now) which says to me high estrogen.  I feel more emotionally stable than yesterday, I just feel jacked up, not at rest, like I'm vibrating with tension.  At pack end I felt like my period was about to start, and it didn't come. This jittery jacked up feeling kicked in at day 27. The continuous spotting has stopped, and now nothing (period normally relieves this build up of tension feeling).

By coincidence GP jsut rung as I'm in the queue for a consultation by phone to discuss Jaydess ( low dose coil), which I'm terrified about.  Speaking to her tomorrow but not convinced she's going to have anything useful to say, they just quote studies don't they, most women don't gain weight, there's no evidence to suggest it causes low mood blah blah.  I doubt a poxy GP is going to know much of any use about Qlaira either?  I will try to park my cynicism and just see if she can explain.

Am I correct in thinking if this was progesterone intolerance, I'd have known about it before now ie) I woudln't have sailed through a month feeling pretty darn good if the issue was an intolerance to dienogest, or does that take a while to kick in?  And actually, forgive me for being dim, what exactly does prog intolerance feel like anyway?

I know I'm getting whopping spikes of estrogen, as testing shows this, this is what is causing the histamine issue.  The most logical explanation my foggy brain can come up with is Qlaira was buffering this by providing a prog counterbalance, which has plummetted at pack end?  Sound plausible?

[She pauses to scream into a pillow at the unjust and wholly inadequate level of women's care, which is a bloody joke!  WHY doesn't anyone know what this or frankly even bloody care in the medical profession???]

Reb
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CrispyChick

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #258 on: March 22, 2021, 07:40:25 PM »

Ah OK. I'm not sure about the ja ked up feeling then. The pill can increase BP though, so hopefully that's not too much of a prob.

I agree, if you were prog intolerant, I think you'd know about it sooner. You had a good first month. There's every chance you'll have a good second month once settles down again...

Jaydess is less prog than mirena... But that's all I know. With my experience of levengesteral in microgynon... I'm opting to stay clear. It's that control thing, like u say. But then, here we are suffering all sorts of side affects to get to the magic 3 months... Suppose there's no difference really... You can have it out at the 3 month point?!! They're defo meant to be good for bleeding issues. Got a friend had mirena for constant bleeding. She's fine now... But took a year to settle!!!!

Good luck...
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Shannonplussed

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #259 on: March 23, 2021, 12:49:52 AM »

Jacked up, wired, on edge, nails on the blackboard inside, feeling like a box of frogs—this is high estrogen. For me. I also have a higher resting heart rate with a higher estrogen dosage.
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RebJT

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #260 on: March 23, 2021, 05:55:13 AM »

Hi Shannon

Thanks, yes I am thinking it's high estrogen, it's just worse than it normally is and going on for longer.  I also have needling, stabbing pain in my boobs, I think that's estrogen too.  I think skippnig my period at pack end has thrown me for a bit of a loop.  Unsure what to do, think I might take my pill at bedtime as I always feel better in the mornings so perhaps the worst of it could wear off over night.  Doesn't help I also take thyroid meds (I had my thyroid removed) and when I feel like this my thyroid meds feel too strong too, so I get a doubly jacked up feeling.

You've commented on my jaydess thread just now (thank you), I'm really wondering if continuous prog might be better, I just can't work out if I'm prog intolerance (people talk about this a lot but nobody really tells you what it is and how you tell if you've got it!).  Is your experiment with the estogel plus mirena overriding your own oestrogen surges?  I'm talking to the GP at 9am this morning, she's meant to be their HRT GP, although my cousin sees her, and doesn't seem to have performed any miracles! 

Thanks

Reb
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Gilla999

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #261 on: March 23, 2021, 06:11:09 AM »

Reb just a thought and I'm sure you've looked into it already - but it couldn't be anything to do with your cortisol levels? I'm trying to think what could raise your resting heart rate but not all the time... x
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RebJT

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #262 on: March 23, 2021, 08:05:42 PM »

Hi

Gilla, yes I think it is cortisol, that's how it feels.  There's something called the 'progesterone steal' - in some people, and under stress, the body steals it to make cortisol.  I feel so utterly unwell, I haven't even got dressed today, I've skipped even my thyroid meds, I feel like I've taken cocaine, just on the ceiling with jittery, jacked up, ramped up feelings.  Not sure I can stick it out.  I've emailed the gynae, and spoken to the GP, GP thinks that jaydess coil might be better as in theory local lower dose prog.  I am not convinced!  Gaaaaaaaahhhhhhhh!  Make it stop!  I haven't taken my pill today, was debating bed time, but not sure I can hack anymore.  Why oh why don't doctors have any solutions?

Reb
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CrispyChick

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #263 on: March 23, 2021, 08:18:49 PM »

Oh Reb, it's so awful we dip in and out of torture!!!

Are u due to take prog as well as estrogen today??? If so, it might help.

I think steady dose is the way to go. If you decide on the jaydess you'll have no estrogen though, only your own dipping up and down...  ???
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Alicess

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #264 on: March 23, 2021, 10:25:56 PM »

Hi RebJT, some information on ' pregnenolone steal'

https://www.zrtlab.com/blog/archive/reassessing-pregnenolone-steal/

Regarding cortisol; estrogen raises Cortison Binding Globuline (CBG) of transcortin.. CBG binds cortisol so there is less cortisol available for the body to use. When our estrogen levels go down our cortisol levels go up.

I'm sorry you feel so bad but I think CrispyChick is right, Jaydess will probably give you more ups and downs.

Alicess X
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RebJT

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #265 on: March 24, 2021, 06:31:13 AM »

Thanks

I didn't take my pill last night and I've woken this morning feeling a bit better, but histamine still incredibly high, I think it's high estrogen, which would gel with me being on the high estrogen days of Qlaira, and no period coming (my own estrogen rising) which normally resets this nightmare.  Histamine and estrogen go around on a loop, one increasing the other, I think I've just tipped over my level of tolerance and flooded my 'histamine bucket' - partly my own fault as I was feeling so fab I cheated on my diet and had a bit of prosecco, curry and cheese etc last few weeks, which I usually strictly avoid as they are so high histamine.  One other clue that it's estrogen, is despite feeling like death, I have nice skin, it's all plump, and I've dropped a bit of weight, which would suggest I'm awash with the youthful hormone! 

Oddly I've been dropping weight and feeling massively over medicated on my thyroid meds too, this tends to happen when my adrenals goes beserk as well.  Last few days have also felt like high cortisol (it's so confusing, I am guessing all the time) and that seemed to dissipate yesterday (usually take my pill in the morning, didn't take it) but the nails down a blackboard, jittery feelings remain, which tends to match my previous symptoms on estrogen (when I first started with Studd).  He put me on tonnes of E to start with to shut down my cycle and give me a break.  He was convinced I was suffering low estrogen.  But without waiting for test results (E already extremely high on the days when I was complaining of crippling symptoms, I had three sets of tests over three months on symptomatic days, like Floo my E was at nearly 2,000 on those days), and I just collapsed in a flood of histamine.  That's when I went to Panay's clinic to their gynae with an interest in histamine.

In happier news, I don't think it's the progesterone (well again I'm guessing, as why would it happen in week five, not before?) but everybody talks about progesterone intolerance, but nobody tells you what it is, what are the symptoms, does anyone know?  I'm not depressed, fat, miserable, ragey, or anything, I just feel plugged into the mains.

Jaydess, I have a lovely private gynae who uses Jaydess off licence as HRT, so if I want estrogen (already have a massive stash of the stuff) she'll give it to me, so I'm not worried about being able to get a script, just unclear what I should be doing with it (and as above, worried about the histamine /estrogen thing).  The thing that worries me with the coil is control, once it's in I've got to trust the idiots masquerading as my healthcare providers to take it out if I say it doesn't suit me, and my life flushing itself down the loo in the meantime.

This is what frustrates me, most of the women I'm reading here are really suffering in peri, why is the knowledge so scant?  Surely, with millions of women trooping to the doctors, they should know by now how to help us?  I'm about to lose my job if this doesn't get better, it's been going on for months now at this pitch, I'm freelance, I'm totally skint, I really, really, really need some relief.  The worry about that is not helping.

Thanks all, know you understand.  I am still extremely foggy and all over the place, so struggling to think logically or take in information.  If you have any suggestions - or an idea of what's going on here for me, before I disappear up my own backside with confusion - would you mind just spelling it out for me, as I'm still unsure which way is up (and every single time I ask a doctor, they say, 'I don't know'!).

Reb
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CrispyChick

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #266 on: March 24, 2021, 09:41:55 AM »

Reb

I know your issues are different to mine - heavy blood loss being one of them???? So I can see why jaydess would be suggested. But, if you go down that route and use hrt estrogen, you'll just be topping up your own... Peaks and troughs included.

We're all trying the combined pill on this thread to stop these peaks and troughs. So, if you're not happy with qlaira because of the changes in dose and non prog days I think you'd be better on a flat steady dose of both, with no breaks. You could try zoley if you want to stick to bio identical estrogen. Or go for one of the mainstream high dose estradiol like gilla and I.

Unfortunately, I have to say, you're only at the 1 month mark. I'm now at week 9 of microgynon and still not settled. Plus, I've been trying different ones for 12 months! I now believe my symptoms were high estrogen. But I need the estrogen in my pill to override and shut down my own... Hopefully. At the one month mark I was dreadful.

Hope that helps x
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RebJT

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #267 on: March 24, 2021, 10:23:24 AM »

Crispy

Bless you, thanks, sorry I know I'm taking up a lot of oxygen on this thread atm.  That's gone in, I understand, thank you!  Yes very heavy blood loss, and increasingly short cycles (lack of prog I think) and thus more frequent heavy blood loss = anaemia = life wrecked.  Stopping the bleeding is priority number one.  Priority number two is gettng me off this roller coaster as my symptoms are cyclical - day 10 - 14 ish and day 27 - 1 ish (high histamine = high estrogen, the 'vibrations').

What you have said has cut through the fog (and panic) and makes total sense, thank you.  I think my gynae is also suggesting jaydess because I react (histamine) to estrogen, and prog is mast cell calming, so there's some control of going gently with the E.  But I totally see what you mean about the estrogel, it'd just add to my own fluctuations rather than shut them down?

Another of my gynae's patients on another thread is on a mirena, and contrary to all expectations done great, but the wheels fell off with the oestrogel (histamine).  So, she's just about to put her on a combined pill on top of the coil, belt and braces I believe - to control the bleeding, to control the histamine, and then to shut down the fluctuations. 

I need to speak to my gynae really (I just don't have £250 in loose change right now) but think maybe steady dose is the way to go, Zoely is lower dose E as I recall?  I think this horrible blip at the moment is I've gone around on a loop of my own high estrogen at end of cycle (no period, no relief), coinciding with the high dose E days of Qlaira, with no prog to calm it the F down (prog is antihistamine) which has created the hideous cycle of estrogen -histamine - estrogen - histamine.

Perhaps I need a more aggressive anti histamine plan whilst I transition onto a pill that's strong enough to shut down the fluctuations.  All I know is I need help, proper help with all this, it's so disheartening, the hope is worse than the the disappointment!!  I get so excited that finally I've cracked it and then I end up back here.  It's heartbreaking (which I know you all understand as well as I do).

Thanks again

Reb
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CrispyChick

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #268 on: March 24, 2021, 01:06:02 PM »

Reb

I think if you want something to control blood loss primarily (and qlaira has so far been successful at that?) but secondly you want to tame the surges... Then I think, as long as the pill stops the bleeds, you are better with pill.

As you've seen your friend needs the pill on top of thd coil.

It may be qlaira, with it's varying doses, is not the right one. Or it may just need more time.

I do think your own estrogen is going up and down for the first 3 months. I had the poisoned feeling with some of the estrogen dominant pills, and it may have been my own hormones causing the problem, rather the the pill itself. There will be 3 months of adjustment, or torture in some cases 😬.

Have you taken it today of stopped??? If you are going to swap, I'd do it immediately so you don't need to start at square one again...
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RebJT

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #269 on: March 24, 2021, 02:23:58 PM »

Hi

I haven't taken it again today as I'm at Defcon 4 - I was awake again at 5.30am utterly dithering with histamine and the shakes.  The problem with histamine is it sends your estrogen climbing, and that triggers more histamine, which triggers more estrogen, it is a living hell that doesn't stop and it gets very nasty very fast.  So it's not just my own ups and downs, it's when you add exogenous estrogen into the mix, it can get life wrecking very quickly (which is why Prof Studd didn't know what to do with me, I went from feeling better to absolutely utterly dreadful in about two weeks).  Once you are at that point of mast cells on high alert, it's hard to even eat anything, as you start reacting to literally everything (your histamine bucket is brim full).

This is what I need to check, is there a way to get past that critical mass ... it might be she's suggesting jaydess (which was her preferred option) because of my reaction to estrogen.  I need to speak to my gynae urgently, about to ask for an urgent appointment or phone call, as I just need to talk this through from the histamine point of view.

That said, your rationale makes more sense, as it'd shut down the whole nightmare, which sounds like blessed relief, I just need a really experienced opinion on whether it's realistic to expect that I could truly tough it out for three months to get there.  I am honestly at the point of considering hysterectomy, I'd almost rather be fat, knackered and old before my time than tolerate much more of this.  Plus I'm £20k+ in debt now, and barely hanging onto my work ... it cannot carry on, everything is private, iron infusions, prescriptions, consultations, the lot - I'm about to bounce my mortgage payment, p*ssed off doesn't really put into words the level of utter frustration!

Anyway, thanks, let me try and reach her, I'll report back.

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