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[Scampidoodle]

Keep us posted Reb and I hope you can get an appt soon. She works at other sites too so if you can’t see her soon via the nick panay clinic try another one she works at like The Menopause Consultancy.

From my own experience toughing the pill out or any other pill out  with histamine issues isn’t always successful. It’s hard enough toughing the pill out with no histamine issues.

I’m the same in needing to cut out the peaks and troughs. Have also considered hysterectomy. There may be other mast cell meds that help she can consider and it may be worth trying the coil or the mini pill or another pill with continuous load.

One other thing I thought of is I know you stopped your H2 blocker (as I have now) when I did that my H1 symptoms went haywire to the point I got hives which I’ve never ever had before and am on short course of steroids to get rid. The hospital said it may well have been coming off the H2. So you may have had a boost in histamine generally after coming off famotidine depending on how long ago you came off it? If you then went on the pill might have been a double whammy. Just trying to help work it out anyway x

[RebJT]

Thanks so much Scampi

Clinic just emailed me back, they're chasing her, will try other clinic if Panay's can't get her.  I agree.  I've been logging my symptoms on that grid they give you, 28 columns (days) and then rows of symptoms, I've been logging histamine (by bloom on chest, and the symptoms I know /recognise), cortisol / feeling adrenalized, and the shakes (the 'vibrations' as my boyfriend calls them, lol), along with the usual - tiredness, low mood, libido, bloating, weight gain etc etc.  I log on a scale of 1 - 5. 

You start Qlaira on Day 1, so histamine was up (a 4, 3, 3) as I started, as you'd expect at the beginning.  But then I've been at 0 or 1 all month apart from 4, 3, 2, 2, 2 from day 14 (again when I usually get it).  If I scan across these five weeks, histamine starts really climbing day 25 and 26 (the two estrogen only pills at the end of the pack, so estrogen up, prog sharply down) and then day 27 and 28 are a 4 and a 5 (the sugar pill days) and now I've had 7 days of max score of 5 (more like a ten!!) since I started the new pack (2 high estrogen pills, and then 5 days of high estrogen/ low prog pills).  Sorry all the data, but that says to me a) this clearly went awry once the prog stopped, and things fluctuated, and also when I had a big influx of too much unopposed E.  My 'vibrations' which seem to mirror my histamine, only ever once went to a 3 the entire month, and I've been at zero or 1 for the rest.  The trigger was most defo the pack end, when it fluctuates (which despite all this misery is at least useful info!!).

So way I see it, perhaps what I need to try next is either prog only (coil, mini pill), or as Crispy and the girls here are saying, a steady continuous dose of P and E back to back to stay balanced and override my cycle.  I can't see how I'd go to 100mph on the histamine in that period when it was so steady on combined P&E - slightly more P vs E.  I've been saying to my mum and friends all month, I can't believe how much better I feel, my histamine is so much better, I've had endless comments on how 'the old you is back'.  I think the trigger is the drop in P relative to E.  Also if I was prog intolerant, I think it'd have reared its head before week 5!

I'd prefer a pill to a coil as I'm more in control, but I do need some advice pronto.  Interesting about H2, the boomerang effect (read about that) but stopped that in December with the iron hoo ha, and had been feeling OK (sorry about the hives, what a nightmare this all is).

Will check my inbox (something up with my notifications here) as think I prob have a message from you I haven't responded too (sorry!).

Thanks again everyone, honestly, means a lot, it's been a desperate few days (with the double whammy of the disappointment on top).

Reb

[CrispyChick]

Avon pill ladder will tell you which pills are more estrogenic and wfich are more prog dominant. Might be worth a quick look before you speak to your specialist. 👍

[Kathleen]

Hello ladies.

Sorry to be thick but are you all saying that progesterone not only balances oestrogen but also histamine?

I can see why a coil wouldn't be an attractive option but is a prog implant a possibility if indeed such a thing exists. I think hormone implants are put in the upper arm which may at least be a less awkward procedure.

Apologies if all the above is complete nonsense!

Take care everyone.

K.

[RebJT]

Hiya

In most histamine intolerant women progesterone can be mast cell calming (histamine tamping) but not all, in others it is histamine aggravating.  Estrogen definitely is histamine aggravating.  However most histamine intolerant women are also progesterone sensitive, making the whole thing a bit of a nightmare in terms of getting the dose and delivery right.

reb

[Scampidoodle]

I agree a pill over a coil as you need the continuous hormones. Unopposed oestrogen is the killer here and you’re logging it and know that now.

So maybe try a back to back combined pill then if that doesn’t work then the mini pill.

Glad you were ok coming off the H2s. They caused your iron issues and for me they gave me terrible joint and muscle pain. I can walk freely now I’m off them! I have severe mistrust of any meds now!
But clearly for me they sent my symptoms haywire. Rebound as you say. I will up my H1’s daily as you did.

Take care and keep us posted x

[Scampidoodle]

Also agree if you were badly prog intolerant I reckon you will have found that out in the first month of this pill you’re on now. Like when some women get the Mirena they need it taken out with in one or two days as they know it’s not working. And from your logging it sounds like the Prog is not the issue it’s the E! X

[Scampidoodle]

Sorry me again, I was just pondering that if on the mini pill what happens to your oestrogen? Does it just stay low and steady or just do it’s own thing? I can’t get my head round it.

Thought it can’t get too low or millions of non menopausal women would be getting menopause symptoms.

[RebJT]

Hey

Thanks Scampi.  I don't know, I just remember feeling terrible on the mini when I was younger, really low and depressed, but I can't imagine it shuts off your oestrogen, I don't quite get the logic of all this yet either.  Obvs histamine makes it more complicated also.

Agree with your reasoning re pills and all the rest, I just want to speak to her to check she's eyeballing my notes (busy doctors can't possibly remember every detail) and I want to know why she thinks one is a better option over the other, and just check my logic, and run the symptom log past her.  I appreciate 17 days of E/P combined isn't the greatest data set in a perimeno woman, but does point to something I've been baffled by for years and years (this started when they took my thyroid out ten years ago, been cranking up in the last five, unbearable for the last 2) - and that is maybe fluctuations are more to do with the suffering, than one hormone, or level of hormone over the other.  As Crispy says, maybe keeping steady and unwavering is the key to all this (this is such a long thread now, I did read lots of it, but it's probably already here and I missed it).

It doesn't help that most of the info out there about oestrogen dominance is a bit woo woo (highly influenced by the work of one doctor years ago, John Lee - and much loved by functional med folks - who thought progesterone was the cure for all ills - Studd told me it was 'bunk' lol) and equally standard meno gynaecology only really focuses on oestrogen deficiency (hence Studd - as any doc on first reading would have - telling me my jitters were lack of oestrogen, when the tests came back, opposite was true).  And then of course, woe betide the anomalies like us lot!

Anyway, another write off of a day, but at least it's over ... netflix in jimjams and trying to tune this out for a bit.  Thanks again for today ladies, really would have gone nuts without you all.

Reb
x

[RebJT]

Just putting this here so I can find it again, I dont' really have PMDD but this is interesting about mastcells and monophasic pills (You're right Crispy).

 https://hellsbellsandmastcells.com/category/pmdd/

[Gilla999]

Reb I'm sorry I don't have much to offer as the histamine aspect is totally unknown to me but I just wanted to say despite that I identified so much with a lot of what you said - the utter desperation, having your job at risk from it (mine is too, same reason), the frustration at being left guessing. When I first started Zoely and had 5 wonderful symptom free weeks all my family were saying "we've got the old you back!" too. This made the subsequent fall even harder to deal with, not just physically but mentally too.

All I can do is send you good vibes and say keep going... that's all we can do. You WILL get past this initial blip. Someone told me I was too concerned with thinking about it all the time and my response has been - when you periodically/regularly go through something that is so physically traumatic (for me, a week of severe sleep deprivation every 3 or 4 weeks) it's impossible just to accept that as your normal life and not need to fix it, particularly because I am adamant there is something physical that is at least triggering it. (ie it's not just psychological). And it very much sounds the same for you - what you're describing is not normal or deal-able with in the long term! It's not acceptable! Keep going - it might take a few trial and errors but keep at it xx

[RebJT]

Hi Gilla

Thanks, it's a living hell. I just cried all over my mum as at the age of nearly 50, she's bailing me out again, she's getting old now (77) and I just feel like a failure, she said 'we're going to get you right, it's my job as your mum'. She's told me to book the consult, and she'll put some money in my bank so I don't bounce my bills, it's a ridiculous state of affairs.  I'm crashing off Qlaira (done two days no pill) still trembling, now very emotional, but at least the histamine is coming down.  You are so right, people have no idea, this is BRUTAL and I'm so worn out with it, I am a bright, hard working cheerful person, I want me back!

Heard back from gynae, she says it's hard to say for certain what's going on, but sounds like phasic pill is too triggering with the fluctuations.  She said she wouldn't do consult to save me the money, I've gone back and said I really need to speak to her properly, family will pay.  In her email she said my options are:

Zoely back to back no breaks (why did you crash at five weeks Gilla, any ideas?) - unlike you, I am very sensitive to E, so wondering if this is a good option, but have said I want to discuss whether she thinks it's feasible I could tolerate the exogenous E long enough for it to shut down my own cycle.  This is what is worrying me, as the histamine estrogen spiral is so bloody brutal, not sure I can do it again.  Perhaps there's another mast cell drug we can use to get me on the damn stuff.

Or Jaydess - prog only - (really wondering whether tackling the E dominance first is the best option (head full of rocks today)) and then we add low dose E gel or patch, again for same desired result.  I can tolerate a bit of E gel, as I have before, and wondering if Qlaira was too high dose.

Still confused, absolutely knackered, worried sick about slipping deadlines and mounting bills ... which I know you all understand.

Once I've sorted this out, I'm writing a bloody book - women's care should be better than this, can you imagine men putting up with this crap?!

Reb
x

[RebJT]

Sorry, me again,

Is Zoely prog dominant or E dominant do we know?  How does it compare to Eloine if anyone has any experience of that?  Apparently my gynae has had some good results in some Mast Cell / Histamine women with Eloine, but it's all greek to me!

Ta

[Gilla999]

Hey Reb - I crashed at the 3 month mark. Before that time I had had two other "episodes" of the terrible night sweats and insomnia and one of them at the 2 month mark was accompanied by what definitely felt like my normal PMT in terms of my emotions so when it happened again 4 weeks later I felt pretty confident that my own hormones were still fluctuating underneath, which was the reason I had to change. After researching the crap out of it and learning that that Zoely's Estrogen (estriadol hemihydrate, also called 17B estriadol) is weak compared to the "traditional" Pills containing ethinyl estriadol it backed up my feeling about my own hormones not being suppressed even more, so I switched.

I'm not sure whether Zoely is an E or P dominant Pill - I had actually wondered that myself. Considering the Estrogen in it is weak compared to ethinyl estriadol I would imagine it is Prog dominant, but I certainly didn't feel the Prog side effects that I did on traditional Prog dominant pills like Microgynon. Any info on the internet describes the Prog contained in Zoely as having "a strong affinity for progesterone receptor" but I don't know if that means it's "Prog dominant."

Eloine contains 20mcg ethinyl estridaol which I'd imagine is still going to be stronger than Zoely because of the difference in potency between ethinyl estriadol and 17-B estriadol. But as I've mentioned before there are next-to-no publications about the direct dose equivalents between the different types of estrogens so it is really hard to know for sure. Zoely could be a good option for you if you aren't too worried about totally suppressing your own hormonal function, but if your gynae has had good experiences with Eloine (which is the lowest estrogen pill available from the normal types before you get to the POP) then perhaps it's worth a shout? Especially as you seemed to be doing ok on Qlaira until you had this unopposed estrogen hit?

[Scampidoodle]

I just had my ferritin results which were 113 and all other bloods normal. You kind of wish something would come up to explain all these symptoms don’t you!

It feels like we all need to shut down our hormones. I often think when people talk about trying things for 3 months that surely they don’t mean going to hell and back for 3 months? I thought maybe the odd mid cycle bleed or headaches or random boob pain. Not how we are all feeling.

Good luck everyone.

How are things going on your new pill Gilla? X