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Author Topic: GP has prescribed Qlaira - Feeling scared and need encouragement!  (Read 92828 times)

CrispyChick

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #240 on: March 20, 2021, 09:20:42 AM »

Thanks Gilla. I've started an iron supplement and will maybe ask for new blood tests.

I think you're right to have the celiac test... However I went down that route... Convinced myself that's what was wrong with me. I had the test (negative) but also convinced them to give me the endoscopy, as the blood test is not always accurate. I was negative!

I've eaten gluten free for a year, as you can be non celiac gluten sensitive... No change. So I've now sacked it off...in fact the lack of fibre was more problematic for me.

I should add, my sister is celiac.
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Gilla999

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #241 on: March 20, 2021, 03:53:41 PM »

Thanks for the info Crispy. Today has not been good... the morning fatigue that I've had for the last few days has been intense today - slept for 9 hours, got up for 2 hours then had to go back to sleep for another hour. Then tried to do a bit of something in the garden but couldn't and came back in to sleep AGAIN. It's not normal-level tiredness - it feels like I'm wading through treacle. Too tired to even watch TV! I have no idea of this is side effects from starting Yasmin or connected to my digestion problems which are even worse than when they started in early December. The irony of being here complaining of sleeping too much is not lost on me  :)

Have an appointment with my doctor tomorrow to discuss getting celiac test. I don't think this is connected to the insomnia and night sweats thing, it feels separate. I was just interested to know what symptoms celiacs have - i have quite a few of the text book ones but not stomach pain for example
« Last Edit: March 20, 2021, 03:56:05 PM by Gilla999 »
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CrispyChick

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #242 on: March 20, 2021, 04:40:29 PM »

Oh Gilla... This is just sooo difficult. I feel your pain.

Yes, the sleep/tiredness is ironic for you. And, because you're sleeping like a log... Stick with it... I've had many treacle days and like I've said before I do renrmber bad tiredness on starting pills previously (I know this will be on a different level, but the pill is giving us hormones like pregnancy... Our bodies are older!)

Take some caffeine tablets if you need to. If everything else is OK...

Good call on the celiac test if your digestion probs are getting worse!!!

I'm having a terrible time again. Cavt believe I've lost the raging and now hog the migraines. Second this week (I think it's connected to the nose feeling). I've just taken a triptan.

I've looked through my diary abc had severe migraines with gederal last year, big actually have suffered from migraines on all these pills, but aldi had them dreadfully on 3 months of nothing!!! So I'm not coming off for this...doc mentioned before daily preventative meds... So might need to try that... Although they don't look appealing!!!

I just can't work out his thd first 8 weeks on micro, I had no headaches at all. Weird.

Off to sleep this one off x
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Gilla999

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #243 on: March 20, 2021, 05:20:13 PM »

Have you really had treacle days? That makes me feel slightly better in that I can rationalise side effects and know they are temporary. Bloody hell the fatigue is all consuming! And also I can't stop eating.

That's so strange on the migraines. It's so hard to know if it's hormonal or being triggered by something else. Would you consider looking into proper migraine preventative treatment? I think there are a few options...

Hope the sleep has helped. I've had two migraines in my life before and they were horrendous. Once you've had a migraine once you know it. X

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CrispyChick

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #244 on: March 20, 2021, 06:39:23 PM »

Hi Gilla

Treacle days? Yes, absolutely. I've had quite a few with my start up of microgynon. In fact, I think that's what put iron in my mind.

Honestly, if you've gone from no sleep, to wavt to sleep all the time... I thi k this is good. It's a change!!! Try and give it the full month to see what happens.

You told me to stick with the ragey moods  and depression. You were right!!! But at the time it was hell.

So, I've taken my triptan abc had a snooze. Not much better. This is my classic going round in circles - is it migraines? Is it my sinuses? Is it anything to do with my hormones???

My nose is clicking and feels dry and stuffy behind the bridge. I've started my strong antihistamines and taken a decongestant to see what's what. I just can't stand the thought of going bsck to daily headaches.

I swapped pills, last May because of this same thing... And it never resolved. As my husband just pointed out... It has got warmer. Hopefully it's a seperate issue from the hormones... I'll call my doc next week and push about my ENT surgery...

Hope u have a good sleep and less treacle tomorrow. 😁👍 You can do this...
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RebJT

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #245 on: March 21, 2021, 10:11:16 AM »

Morning Ladies

Really hoping Madame Ovary might be along to offer me some reassurance.  After having nigh on a brilliant month (all things considered) on Qlaira, I got to the end of the packet.  i really thought I was going to struggle with the progesterone but that doesn't seem to have been the case.  However, I think coming to the end of hte prog pills, then having 2 days E only, 2 days sugar pills, and then starting the pack on two days E only has perhaps created a steep drop in prog, but I'm guessing.  I also feel  like I often to when my E is too high.

Anyway, no withdrawal bleed despite feeling like I might get one.  Instead I am unbelievably jittery (Madame Ovary and I call these the vibrations!), wobbly, emotional, shaky - it's like nails down a blackboard on the inside.  I feel foggy, shaky (metaphorically and I am literally shaking, like a high frequency vibration all over), insecure, emotional and just goddamn ill.  Not sure what to think, as these are the very symptoms (along with the flooding periods, so it's a blessed relief that I at least haven't had one of them) that caused me to seek help in the first place and I just wish i knew what was going on.  Could it be my own hormones under neath the Qlaira.  Normallly this stops with the onset of my period, but obviously not had a period.

Just looking for some hope that this gets better?  Good news, I've lost the weight I gained, and until this wobble, I had been feeling significantly better.  Just hoping this passes.

Reb
x
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CrispyChick

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #246 on: March 21, 2021, 10:23:42 AM »

Hi Reb

I'm not sure if I can help you really, other than to say I'm really keen on sticking to a pill with continuous doses of both e and p... To avoid any changes. I'd defo suggest no break. But it seems qlaira has estrogen only days too 🤔

As you know from my microgynon hell, I'm at week 9 and still not fully settled... So it defo does take time.  I've had days like you describe over the last 9 weeks... And thats on a constant dose.

I'm on nose and headache hell at present. No idea if the pill makes this worse, but I'm determined not to stop it, so they'll havd to sort my nose 😂.

Any thoughts on my iron. Iron was 18 and ferritin was 29? Xx
« Last Edit: March 21, 2021, 10:25:19 AM by CrispyChick »
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Gilla999

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #247 on: March 21, 2021, 11:28:50 AM »

Hi Reb - I don't have much wisdom to offer other than I agree it does sound like the most likely cause could be the sudden drop in Progesterone. As Crispy says that's part of why I didn't want to go for a phased Pill, but then I have also been told that these fluctuations are perfectly normal/natural so in theory shouldn't be a problem. Sending you some good vibes, it sounds awful. I'm taking the fact that Madame O hasn't been here in a while as a very positive sign  :)

xx
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MadameOvary

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #248 on: March 21, 2021, 07:08:38 PM »

Sorry I haven't been on here for a while. Just trying to catch up.

Gilla I'm sorry Zoely didn't work for you and Yasmin sounds like it's got its own drawbacks. Maybe the fatigue is your body catching up after being so sleep deprived for so long.

Reb, sorry to hear you've been jittery on Qlaira. I'd need to check my symptom diary but I think I did have a few blips like this in the first month or 2. I don't get this anymore though. My only problem is that I still seem to wake up around 4am every morning and I feel very tired.

Unless it's unbearable, I would stick with it as my experience is that things have continued to improve over time. Could you skip the placebo pills to shorten that progesterone drop?
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RebJT

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #249 on: March 21, 2021, 10:26:54 PM »

Hello all

Thanks so much for the replies, God I feel wired to the moon but reassured to hear this calms down.  I am sticking with it, but I have high cortisol sort of adrenaline rushes (like someone walked over my grave feeling when my hairs stand on end, it's like foil on your fillings, but inside your body if that makes sense) and that tight as a piano wire feeling in my body, still shaking and vibrating and I'm an insecure mess.  Doesn't help that my partner's ex has kicked off once again this weekend over shared custody, really really vile stuff with me as the target again (all nonsense, but there's a little kid in the middle of this) and he and I have argued as the boundaries are all over the place as she just bulldozes him, and he's punch drunk with it, and she scares the beejaysus out of me, so that hasn't helped my equilibrium (really couldn't have been a worst weekend for it, last weekend I was Dalai Lama like in my zenlike calm and bloody poise!).  My hands are shaking and I just feel 'revved' - hard to explain if you haven 't experienced it, which I know you have Madame O, why don't doctors know what this is??  Defo going back to back.  I think having a bleed would have helped, as normally I'm like this just before my period, and obviously no relief there this time (telling myself it's worth it for hanging onto my iron).

Crispy, you are in absolute iron deficiency (ferritin under 30), serum iron is a volatile number (it varies day to day, but is still a bit low) but your storage iron is dreadful and this will make you anxious, emotional, shaky, ragey, you name it.  See here for list of symptoms https://www.oatext.com/iron-deficiency-without-anemia-common-important-neglected.php  Do you know your Hb and RBC and how's your folate, MCH, MCV etc?  Really, really, really urge you to get on top of that, maybe a gentle iron (solgar do one that's OK if your gut can handle it, 20mg per tab) you want to be taking up to 200mg ELEMENTAL iron a day, with vit c, in split doses if that's easier, best in the morning if you can manage it.  Even better if you can tolerate fumerate it's better absorbed (many can't handle the side effects, especially the stomach side effects), again take 200mg ELEMENTAL iron, I think there's 65mg per tablet, so you need at least three.  Honestly, for all the crappy symptoms this weekend, overall I am a different woman with my iron fixed.  I'd be a basket case with a ferritin of 29!! I am really symptomatic with a ferritin anywhere south of 100.  Hb must always be over 127, ideally over 130.  I know I'm on a soapbox, but I've been hospitalised twice with horrible panic like anxiety and skipping beats, I've done the round of cardiologists etc, all baffled, it was my bloody iron!  It's wrecked my life for at least a decade, I feel very passionately women deserve better care.

Thanks all, will keep you posted, I just need this stretched tight to quivering point feeling to calm down!!

Reb
x
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RebJT

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #250 on: March 21, 2021, 10:44:17 PM »

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.

Floo, sorry I missed this.  You poor, poor thing, that sounds horrific.  And well done for going and proving your theory, I don't know whether it helps you, but if I understand what is going on, I can cope so much better with symptoms as in my head I have a logical framework.  It's the worry and wondering that drives me potty.  I really hope you can find a solution that gives you some relief.  It's so crap isn't it, and doubly worse because nobody really takes us seriously.  I keep thinking, logic dictates there's an answer, there HAS to be.  That keeps me going on the crap days.  There's an answer for you too, I'm sure.  Keep on trucking and take care of yourself.  Let us know how you are.

xx
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CrispyChick

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #251 on: March 22, 2021, 10:12:57 AM »

Reb, I'm sorry your feeling it so bad at the moment. Take heart from what madame ovary is saying... It will get better!!!

Thanks so nuch for the info on iron. I can see that ferritin less than 30 is considered low... In yet it was never mentioned to me 🙄. I'm going to ask for new bloods as that was 20 months ago.

I can see the solar tablets - they get good re iews for being easy on stomach. So I'm happy to take them. They are 20mg...but fro what your saying I need 200mg a day... But I'm guessing the 20 will help, but just take longer to get there...?

I am incredibly fatigued today. Treacle day Gilla...
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RebJT

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #252 on: March 22, 2021, 10:52:49 AM »

Crispy

Defo get new tests, especially full blood count and your ferritn (a full iron panel would be good, including your transferrin saturation).  And no it's incredibly poorly understood, I'd save your breath debating this with your GP, they won't help you (the specialists at the iron clinic said as much, NHS pathway for iron is woeful, not worth an adversarial tussle with your doctor, just sort yourself out).  And sorry not clear, you need to take at least 200mg of elemental iron a day to correct iron deficiency.  So with solgar that would mean 10 capsules (with ferrous fumerate at 65mg elemental iron per tablet, that'd mean 3 tablets a day).  Build up to that in split doses, until you can tolerate 5 in the morning and 5 in the afternoon (iron isn't absorbed well at night, when our hepcidin levels rise).  Take with a good dollop of vit C with each dose, say 1000mg, this aids absorption.  You might want to think about correcting any deficiency of folate too, as I know you were low I think in Vit D, and B12 and these issues travel in a pack, if you have one, chances are you have them all (they are your blood builders).

Really important to get your head around this yourself and not to rely on a GP to do it for you - they simply won't (the paper I posted up thread is vital reading imho) but the specialist at the iron clinic told me any woman with a ferritin under 100 and an Hb under 127 will be unwell and symptomatic.  I'm a changed woman since I sorted this out (despite the absolute hellish symptoms the last few days).

Reb
x
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Floo36

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #253 on: March 22, 2021, 01:36:28 PM »

Thanks RebJT we have to keep going in the hope of finding a solution. 
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CrispyChick

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Re: GP has prescribed Qlaira - Feeling scared and need encouragement!
« Reply #254 on: March 22, 2021, 04:09:14 PM »

Thanks Reb

I am sooo fatigued and foggy today. I've ordered the solgar iron. I already have the better you spray. So I figure I could take both, giving me 30mg a day to start. I've also ordered vit c, as you point out, everything says to help absorbtion.

I've made gp appointment. Got to wait a month. I'll ask for bloods then, hopefully the 30mg a day will help - my bloods will show either way.

I don't want to take too high a level without new bloods. My fatigue could be the microgynon or my sinuses... 😬. But obviously my ferittin was low before, so it might help. I've got a plan. I like a plan 😁.

How are you feeling now??

Gilla, how are you doing on yasmin???

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