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[CrispyChick]

Oh floo, it's so awful. I totally understand. This has been me for 3 years. I felt so ill at the beginning that I had every test under the sun.

OK. So you stopped the low dose pill and tried hrt??? And that was worse?

Certainly an eye-opener for me was trying hrt in Dec and feeling poisoned. It is that moment that I realised my estrogen was prob surging. That's what makes the pill make sense... But I'm still not finding relief...

So, I know the pill is not meant for over 50, but if they were happy for you to try a low dose one, maybe the extra 10mg estrogen is all you need...?

There are differences in the safety profiles of them. From what I understand 3rd generation progesterones, which give less side affects, have higher stroke risk. The second gen ones are safest. Microgynon is a second gen one and one of the most prescribed pills, but boy it has been brutal on my moods for the first 8 weeks...

I guess it's the specialist you need to convince if you want to try. Or you could ask for qlaira... A few of the ladies on this thread are getting on OK with it?

Are u UK? Is it a NHS specialist???

Keep fighting. We deserve a better life xxx

[RebJT]

Hi

Just a quickie, will write more later, just swinging by to drop these here to read later

https://www.nhstaysideadtc.scot.nhs.uk/approved/guidance/Contraception%20Table%20TSRHS.pdf - compares Qlaira and Zoely with other pills we are discussing

And a med paper on Qlaira https://journals.sagepub.com/doi/pdf/10.2217/WHE.11.49

Qlaira's estrogen in is Mg and the others are in mcg, not clever enough to know the difference in potency though, is Qlaira a high estrogen pill ...?

Floo, I'll write more later as I also have multiple health conditions and it's been a very very long road indeed, but I'd really, really, really urge you to sort your iron out pronto.  I'll post some links when I've finished work, there are some irons that are much better tolerated. 

Also assuming with your tummy troubles they've ruled out coeliac and crohns?  But if you are anything like me, your 'mental health' woes could largely be due to your anaemia, honestly combined with my thyroid troubles (very very serious and treacherous endo problems, now sorted, but doesn't take much for me to be thrown off balance), peri hormones, and low iron, I was a certified basket case!! 

It's only now I'm coming out of this latest trough that I realise how terrible I've been feeling, and how I must have been bumping along the bottom for years.  The amount of time and money I've spent, and the ridiculous amounts of lost earnings and frankly, just human suffering that I've endured makes me very angry.  Women's care should be better than this and someone should have been listening to me and in my corner.  It's not right we are left to suffer like this, and if we complain or stand up to doctors we are branded as neurotic.  It's bloody rubbish!

A month of Qlaira, and two months of my iron being fixed post infusion and I'm honestly a new woman, my mum keeps telling me that I sound like my old self, starting to feel like her too (don't know whether this will make sense, but back when I was really poorly - lost my job, isolated, fat, knackered and feeling bloody dreadful, I used to cry and say 'I miss myself' ... well she's back!).

Anyway, I'll be back, but I can guarantee if you get your iron (and blood, B12, folate etc) sorted out you will feel so much better.

Reb
xx

[Floo36]

Hi

You are all suffering so much it’s just not right is it.

I only stopped the Eloine just over 2 weeks ago because 3 months ago my specialist (private) added in Lenzetto, I just got worse, kept upping the dose and no change all the usual low Estrogen symptoms. A few weeks ago I had a review and she said that the pill can affect absorption of hrt and to start reducing the Eloine.  I just thought well if it’s doing that and she’s taking me off it anyway then I may as well stop cold turkey because I don’t want to wean off over the months and waste more time being ill trying to work out if I absorb the Lenzetto.  I don’t feel any different since stopping the Eloine which keeps leading me to it’s my own fluctuations that are making me ill.  I had a week of blood test just on the Lenzetto to build a better picture and it confirms that my hormones are frantic, it’s hard to work out if I’m absorbing the Lenzetto but I think I probably am but difficult with fluctuations.  Our own hormones will carry on regardless won’t they.  I just never would have thought the ovaries could push out such high levels of Estrogen, they really are fighting to survive, but I’ve had enough now. 

[Gilla999]

I did a lot of reading around in my desperation last week and the estrogen doses in Qlaira and Zoely aren't directly comparable to other Pills in terms of mg and mcg because of the difference in estrogen types. I did a LOT of searching to try and find an equivalent and couldn't - it seems like answers vary, I'll spare you all sharing links of the different estimations I found - but what seems for certain is that the ethinyl estrogen contained in normal Pills is significantly stronger than the natural form of estriadol in Zoely and Qlaira (which is why you have less side effects with them). The dose in Zoely and Qlaire clearly works fine for a lot of people but my own situation has been so severe that I need something that will shut them off entirely. Another member on here in another thread helpfully told me that Nick Panay (a very experienced gynae in London) said that you need a minimum of 30mg of natural estriadol to totally suppress your own hormones (Zoely contains 1.5mg).

Crispy you seem to have done just as much research as me on all the Progestins etc!  I also saw that the second gen ones have less risk, I only went for a 4th gen one in Yasmin because I remember the Microgynon rage!

Floo I really would recommend trying a contraceptive Pill that has at least 30mg of ethinyl estriadol in it to see if that helps (though as we've said in this thread a lot, it can take at least 3 months). Are the docs absolutely sure that's not an option for you because of your age? x

[RebJT]

God it's so confusing!!  So Qlaira is low dose estrogen compared to the more mainstream pills?

I'm in Nick Pannay's clinic so will ask next time I speak to my gynae as I want to know about topping up with estrogel (but now I'm even more confused as 2 pumps of estrogel = 1.5mg of estrodiol) as I'm defo getting estrogen spikes (really hear you Floo, on the last sets of bloods I had done on my high histamine days (day 12 to day 14) my estrogen was 400 to 600 points over the top of the range, I truly felt crap!!) but I'm also getting days of clearly low estrogen, I can just tell by my skin and how I feel.

I had hoped that Qlaira would shut the whole shooting match down, but sounds like it doesn't Gilla...?  That said, not complaining, feeling pretty good, period is due today and I just have mild vibrations and jitters compared to the usual feeling like I'm dying and shaking so badly I can't hold a pen ... progress!

Reb
x

[CrispyChick]

I'm feeling dreadful today. Not my mood anymore, which has dominated for the last 8 weeks. But today I'm woozy with a bit of dizzy and nausea... Prob my own estrogen still spiking.

Oh yes gilla. I've done a heck of a lot of searching. To be honest, I'm past caring about the safety profile of a pill, I just want one that works, but I suspect for floo, being 53 might make it more of a concern. I dont think I've ever tried a 4th gen progesterone. I actually think a lot of my dizzy/woozy stuff is the estrogen anyway...

So, floo. I'm slightly confused. If the specialist wanted to top your low dose pill up with hrt... Why not just try a higher dose pill?!! Am I missing something??? At least with the pill the quantities are all balanced etc...

X

[Floo36]

RedJT,  sorry forgot to say that I had my ferritin done twice now and all fine.  Thyroid, b12 etc checked.
 
My specialist wanted me to add in some sandrena to the Lenzetto because she thought I wasn’t absorbing because my symptoms didn’t change whether on 1 spray or more over the last 3 months but I’m trying to prove that I am absorbing the Lenzetto because she talked about the implant so I really need to work it out.   I don’t think the implant is the answer. 

These are my bloods done last week that I posted on another thread.

1161 pmol afternoon taken from hand
1656 pmol mid morning taken from the hand
5283 pmol afternoon taken from the arm
1744 pmol mid morning taken from the hand
2834 pmol afternoon taken from the hand

The spikes are huge from my own Estrogen and the first blood result of 1161 is more normal but I don’t know how much of that is the Lenzetto, the way I can work that out is to do another test on a morning before I add the hrt perhaps but then my own hormones may be spiking at that time.  I want to prove is not an absorption issue before I go back to them. Minefield. 

I did ask about the higher dose pill but she said no and there are options but since then the option was the implant but that’s for non absorption problems which I don’t think I have, plus if the Lenzetto isn’t working and it’s my own hormones causing the problem I’m not sure what I can do, I think I’m going to suffer until it stops.

[RebJT]

That's good on your ferritin.

Sorry for being thick, but how are you testing, is this a blood draw?

Reb
x

[Floo36]

Crispychick I’m guessing because the risk is greater, she said the hrt is so low dose in comparison and she didn’t mind adding to low dose pill  I’m going to try and work out if I’m absorbing the Lenzetto then go back because at the moment I have no quality of life, I’m existing like the rest of you and desperate to find a solution, I think about nothing else.   I’m having all the usual symptoms severely at times and the flushes and sweats came back when I went up to 2 sprays when still on eloine.  Part of me wants to stop and start again but I’m scared but then it would only be for a few days to reset, I don’t know. 

[Floo36]

RedJT I went to the local Nuffield it only a mile away from me. 

[Gilla999]

Reb I'm going purely on what I've been told and what I've found while researching but I haven't spoken to a gynae yet (that should be early April) so please don't take my word as gospel! Sometimes info can be shared that has been passed on and passed on - a bit like chinese whispers! In my searching I also found stories of ladies who have done really well, specifically on Qlaira more than Zoely - not sure why that would be, perhaps something to do with the phasing. So definitely go by how you're feeling and not anything I say 

Would love to hear what Nick Panay actually says on what level of hormones in the Pill are needed to totally suppress your own hormones!

[RebJT]

Thanks both

Floo, thanks, I usually use Blue Horizons but their sex hormone tests are so ridiculously expensive I haven't bothered (you buy through them but then book the draw at a Spire hospital) that said I have a Nuffield just up the road, will look, as I'd love to know what's going on on my wonky days also so if they do a cheaper direct booking service, that'd be handy.

Gilla, no worries, I've learned more on the internet than from any doctor.  Sorry, just to clarify then, is Qlaira a low estrogen pill compared the others?  Just trying to get it clear in my head.  Exact amounts doesn't matter, just generally speaking?  But if it is then that would explain why docs are allowing women to top up the estrogen (I'm on Qlaira specifically for the dienogest, secondly because it's natural estrogen) but I'm still learning about sex hormones.

Also, just chucking this out there, I have histamine issues (much improved lately with iron infusion and again this last month being on the pill - progesterone is mast cell stabilising) but estrogen and histamine go around on a loop (histamine tells the ovaries to make more estrogen, estrogen tells the mast cells to release more histamine) - my gynae reckons 25% of the women she sees have this issue.  I dont' think I've ever felt so ill as when this was really out of control.  Might be something to eliminate if you are feeling really awful.

Right, I really must do some work and stop googling sex hormones!!!

Reb
x

[Floo36]

It’s interesting the histamine thing, I need to look more into.  Thanks RebJT. 

Thank you to all you ladies, it helps to talk to you as you are going through the same.  It can feel very lonely. 

[CrispyChick]

Oh for goodness sake!!! I'm now on my third bout of indigestion in a week. When on no pill I got one bout a month a few days before my period.

When on the mini pill I had it so bad I had an endoscopy and was on drugs for it. Got off the drugs in Sept... No major issues.

8 weeks into this pill and it's back.... Grrrr. These hormones are torturing me!!!!!

Sorry. Just needed a rant!!!

[Floo36]

Its awful CrispyChick just another symptom to add to the long long list.