Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[Scampidoodle]

Hi crispy, sorry to hear you’re still getting all those symptoms. Are the symptoms better or worse when you’re on the pill compared to off it?

I’m just trying different things at the mo for the histamine/mast cell stuff so haven’t sampled any other hormones yet. X

[CrispyChick]

Thanks scampi.

Are you getting anywhere with controlling your histamine???

I would say, despite a huge amount of negatives, I'm probably better on the pill. Off the pill was very erratic and with 12 days of severe pmt and a number of days of intense ovulation pain. That's all gone.

But every day I just seem to suffer with fatigue, fuzzy ness, mild wooziness. Then every 3 or 4 weeks a week of 'illness' and the daily nose pressure. Last month I had 4 days where I felt 'good'. That is better than on nothing, but still extremely dissapointing.

That's why I'm thinking I might try the marion gluck route. Conventional hrt estradiol doses were far too high for me yet...

[Gilla999]

Crispy 4 good days is not good  - and I can so empathise, I felt like that for most of the last couple of months and it really brings you down after a while. Don't give up and accept 4 days!! What are you thinking about trying in terms of Marian Gluck? If they prescribe HRT would you give it a go?

I thought I'd give a quick update as I got my Rhythm hormone test results back this morning and BLIMEY. My head is spinning a bit. I can't for the life of me work out how to insert an image here but the take away in terms of my hormones was that, as I suspected, they were absolutely still going on. Not even cycling but just totally erratic, in particular (surprisingly to me) my Progsterone which is all over the place, and the erratic swings matched up with when I was symptomatic. It's hard to know what to make of it exactly, but the erratic Progesterone graph does very succinctly sum up how I felt in that month with my symptoms - totally erratic and all over the place. Perhaps this was not unexpected given I was only a month into Yasmin, but I was over 4 months into the Pill in total (I ran 3 months of Zoely and 1 month of Yasmin back to back) so I am a little surprised to see my hormone levels were still being so erratic. The other key thing for me is that my Cortisol level is sky high and out of range consistently across the day.... need to figure out what I do about that! I really want to see a functional doctor but just can't afford it right now.

Food for thought.. x

[CrispyChick]

Gilla

That's so interesting... Thanks for updating. So you think the high swings of progesterone were causing the symptoms? Which would make sense if you're feeling better on the estrogen hrt. The spray sounds like an excellent delivery route.

It's an awful minefield. Today I totally believe my own hormones are still swinging around under this pill. Today I have the woozy off feeling, which makes me feel yuck and slightly sicky. This I got a lot. Interestingly I also feel low. But not in my thoughts, just physically low and teary. So the pill is definitely not suppressing and keeping me stable because most days I don't feel low!!!

I have no idea what to do next. The estrogen alone on hrt sent me so out of it...i think that's why I'm thinking of the Marion gluck route - blood tests, then they can tailor to me. It will come at a high cost, plus, I'll need to go au naturele for a few months before the tests.

I'll probably give eloine a shot first. But I'm doubtful with the low estrogen...

I'm just going to wait until after my covid jab.

I wonder if the levongesteral in microgynon is the cause of my constant fatigue.

So - you seem to be getting on much better with the hrt. When do you start utrogestan?

The thing I'm worried about is the swings... It makes sense that after meno you can top up to feel better, but right now if we're swinging up and down erratically, I'm not sure I see how hrt can help... 🤔.

[Gilla999]

I wouldn't be at all surprised if the Prog in Micro is causing some of your symptoms. I'm always really cautious about advising people of things because everyone is so different, but all I can say is that even if I still have two weeks of being symptomatic on HRT (like I was au naturel) that it is still a whole lot better than being on the Pill. I don't think I actually realised just how bad I was feeling until I stopped it - I feel much more like my old self. Again, maybe a lot of it would have disappeared if I'd given it six months, but I couldn't hack it. My mental approach with it all now is to try to work with my natural hormones as much as is possible, rather than the synthetic hormones to shut them off. Also you were right Crispy, after the initial 24-48 hours the next 7 days of hormone crash when I came off the Pill weren't pretty - I felt literally ill - but then it cleared and I felt almost high!

I've had a great couple of weeks where I've been like a normal human being again! However I am very aware that I start Utro this Thursday and that I'm approaching my "bad" time of month (though it might be later than normal as my hormones might take a while to kick in after stopping the Pill). So we'll have to see how things go.

I've been speaking to an amazing gynae who trained with Marion Gluck and the BMS - such a relief to finally speak to someone who knows their stuff. She places much more emphasis on Progesterone causing a lot of the side effects in early Peri, rather than Estrogen and she specifically said Progesterone is the anti anxiety hormone. And as we know it exits the stage before Estrogen. Often she recommends Utrogestan only (or the Mirena) before trying adding Estrogen on top if that doesn't help (especially if your estrogen levels are above 300, which mine aren't)

I really don't know if the Prog swings alone were causing my symptoms but it has backed up my feeling that whatever was going on for me while on the Pill wasn't working or helping xx

[CrispyChick]

Gilla... I'm so glad you've at least worked out you're better off the pill than on. 

I really hope you're utro phase goes well...

So, can you see from your bloods that your estrogen is low? Consistently low???

So, is your gynae private??? Interesting that she mentions using prog alone in early stages. Although I tried mini pill and was bad. But then that's synthetic.

I've just read through all the Marion gluck stuff again. I think it's my next step. I like the idea of someone looking at my bloods to Che k what's actually going on, rather than me blindly trying pill after pill and a mainstream hrt. I know from the hrt trial I do not need large amounts of estradiol... Maybe I just need bio prog, but not in an off the peg dose... Who knows.

I think 3 1/2 years is long enough of trying  conventional dosage.

I'll pop a post up about practitioners. Hopefully I wont get shot down for considering the non conventional route...

[Gilla999]

My Estrogen levels au naturel were 245, so below the 300 threshold the gynae mentioned to me to take HRT (though she said what they always do which is that it's more based on symptoms, the 300 is just a guide). My Estrogen levels while on the Pill were sky high - like 5 times the top of the range - which wasn't a surprise to me as my boobs were horrific. The Estrogen fluctuated quite a lot too though (though not as dramatically as the Prog). Ultimately the Pill just didn't suppress my own hormones fully and while it might have done if I'd have given it more time, 4 months was as much as I could handle and I felt worse on it than off it overall.

I really think Marion Gluck is not a bad option. The more knowledge the better you can be treated. If you're interested in trying the bio identical route (I think that's the right phrase - I always get confused) feel free to have a look at the page of the gynae I saw who said she trained with Marion Gluck. Her name is Dr Susie Rockwell. Maybe it's just a personal thing, but I was quite impressed with her.

[CrispyChick]

Thank you Gilla. I'm off to have a look.

One benefit of lockdown is all these experts now offer zoom appointments, so I can see anyone, based anywhere. Although I have found a locally based Marion gluck practitioner.

Interesting your estrogen was low au naturele but extremely high on the pill...yet you still got symptoms. Nothing ever seems to fit.

Yes, I think enough is enough for me. The NHS clinic just suggested trying different pills... They can't seem to help me any more than that, do I feel it's time to move on. I hatevthevtgiughtbof spending hundreds of pounds to get nowhere, but it will be soooo worth it if it works ...

I'm really interested to hear how you get on with utrogestan.

And, can I ask what this gynae suggested for you??? Just wondering how you ended up on the pill???

[Gilla999]

You're right that nothing ever seems to fit, and the only conclusion I've been left with from all of it (including from what the gynae said) is that there are multiple factors at play.

So Dr Susie is someone I have seen as part of a project I'm a part of, which is a new company trialling a new way of working - a group of women have an 8 week course and get to meet different menopause specialists each week as a group and ask questions / get prescriptions etc. Last week it was Dr Susie, tonight it's a nutritionist etc. That's why I was particularly impressed with her as it wasn't just the response she gave me, it was also what she gave the other women that I rated.

She said to me that low Progesterone is typically what causes insomnia, unless it's insomnia that is driven purely by night sweats, which I don't think mine is - sometimes they arrive together, sometimes not. (She did also say that low Prog can also cause night sweats however.). She said if my Estrogen was naturally below 300 (which it is) then she would recommend using Estrogen and Utro (otherwise it would just have been Utro). She did say that Utro is not beneficial for sleep when used vaginally and recommended that I try it vaginally for a while and then try switching to orally once my body has gotten used to it (if I'm still symptomatic).

I ended up on the Pill purely because that was all my GPs would offer me, because I was still having periods. And I had tried HRT for 10 days (only estrogen, self prescibed!) and it "didn't work" so I gave up on it.

[CrispyChick]

Wow. That trial sounds fantastic gilla. Do let me know if you find out anything of great value.

So, it sounds like Dr susie thinks low estrogen is causing probs (but recognising u also have low estrogen), so on that note, you should need the utro... So let's hope that works out for you!!!

Yes. I think I'm fairly certain I wavt to go down the Marion gluck route. I know it is controvervsial, but, on the other hand, I feel quote let down by the NHS. 3 1/2 years of symptoms avd still no further forward. Mebo clinic say try pills then hrt... Done the lot!! I need to try so etching different!!!

I'm not going to rush. I will try eloine first... No point not doing. Then I'll need to come off, which will be awful...

I'd happily take hrt if it is right for me...but the estrogen in femoston sent me off the scale spacey. So conventional hrt clearly not right for me. Utrogestan just cones in standard doses, so again, I thi k I wavt a better fit.

There have been no recommendations on my other post... Perhaps all the Marion gluck clients are extremely happy and not in the forum 

[CrispyChick]

The more I think about it, the more sense it makes. Whilst microgynon is controlling some of my symptoms I am constantly groggy and fatigued. I get plenty sleep...

I suspect the prog dose it too potent.

At least if I get tailor made, I can avoid this shenanigans...

[Gilla999]

I agree. And I also think there is a huge advantage of the natural hormones in HRT vs the synthetic ones. At least during your good days you should be feeling GOOD, rather than just ok (because you're dealing with side effects from the Pill). And it's not like you haven't given the Microgynon a decent shot. Plus you won't have to worry about switching from the Pill to HRT at some point in the future.

Lots of stuff I've read says even the right dose of HRT can take up to 6 months to fully help so I know it's a bit of a waiting game (again) but I'm personally all out of other options so just have to keep everything crossed that it helps, even if it takes some time. These last 10 days has been such a gigantic wave of relief to feel like my old self again. I'm very aware it could come crashing back down any week now, but it's been lovely to have a reminder of what normal feels like! xx

[CrispyChick]

I'm sooo pleased for you. So, on that basis, you clearly respond well to the estrogen.

I think it sounds promising if the gynae actually thinks you need utro (I'm assuming you discussed your blood results?).

Yes, I think one size fits all, defo doesn't fit me - at this stage in my life. I am sensitive to other meds... So I guess that figures. I'm not a weighty person, so given someone double my size would take the same pill or hrt... It does make me wonder 🤔

Perhaps I just need prog... But a natural version of it... At possibly lower dose. Time will tell.

Yip... I know I'm in for the long hall. Not looking forward to it all... Bug I'll defo do it if there's a chance it will help.

When do you start the utro? X

[Gilla999]

What I would say in my own experience is that even though it might be a bumpy road to get your original symptoms sorted, the hormones used in HRT feel to me completely different to those in the synthetic pill in a positive way (sorry I know I'm harping on about it). But especially if you're getting a tailored version you're much more likely not to suffer drastic side effects from it, on top of (potentially) dealing with your original symptoms until you've found the right dose. Obviously I'm only basing this on my own experience though, and I know everyone is different! xx

I'm now in a total quandary whether to start Utrogestan tonight as planned or not. I am just feeling so good at the moment and I know lots of women say it makes them feel fatigued etc (especially at first, even vaginally). I know I need to take it at some point but it's hard to know what's best. The options are:
1. Start taking it tonight which would be 2 weeks since my last "period" after I stopped taking the Pill, so in theory mimicking my natural cycle. However although I don't know for sure, but I don't feel like my own hormones have properly kicked in yet from stopping the Pill. Then I might have to deal with symptomatic days in another couple of weeks (for example) on top of two weeks of Utro now.
2. Wait until I'm symptomatic again (which would most likely be in the natural run up to my period) and then take it. The drawback with this would be I could only start being symptomatic 7 days in advance of my period and then I'm taking Utro for 12 days which would essentially delay my period (also not sure if only taking the Utro at the start of my symptomatic days will be soon enough to ward it off!)

So hard to know what the right thing to do is 

[CrispyChick]

Oh, I'm so pleased you feel good Gilla. I hear you on the natural hormones, but honestly, I'm better on this strong pill than I was on the lowest femoston estradiol dose - I was so spacey and poisoned. Perhaps its the prog I need only right now...

But then, I wonder why the mini pill is noo ger working for me. Gives me horrific pmt now. Which I also get on nothing.

So I have no pmt on this pill, but I'm now in my second week of extreme fatigue. I mean extreme. I've been up 2 hours and packed the kids away, now just so fatigued (not physical). I'm sleeping fine. I can I my assume it's the strong prog in this pill.

Not my worst side affect... But I've been treading through treacle fir 2 full weeks 🤣🤣🤣🙈

OK, I see your issue. I'd probably also be inclined to wait, not least because you're feeling good for the first time, but... Big but. It needs to be safe. I'm absolutely no expert on hrt... But the prog is to stop build up... If you don't take it at the right time, could it be dangerous?!

Given that Dr susie said she would treat u with prog, I have high hopes for you being fine on utro... As you actually need prog... Yes, there are lots of woman on this forum struggle with it... But thete will be many more who don't.

And... If it does turn out to be too much, could you investigate compounded yourself to get a better dosage??? What other experts are you still to see in this trial?

Still no comments on my compounded BHRT thread - either Noone using that route, or they're all happy and not on the forum 🤣🤷‍♀️