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[Marchlove]

Morning joziel

Have you got a blood pressure machine, did you take a reading? x

[joziel]

The problem is that when it’s at its worst (most throbby) is when I’m lying in bed at night and more so when it wakes me at 6am. By the time I get my blood pressure machine set up and sit in a chair with arm elevated to heart level blah etc - well even if I felt like doing that I don’t know if I’d be getting a reading that reflects what’s going on in bed.

But I did have a higher than usual BP at the doctor a couple of months ago (145 over something) - she thought it was just white coat syndrome but I knew it was this HRT.

I didn’t say anything about that but I did a week of 2x daily monitoring. There were higher than usual readings again - 135/something several times but because some were also lower, the average was ok and it wasn’t enough for them to take action.

When I went to A&E it was 158/something.

But it’s not normal for me…. I’m 5ft 10 and weigh 9 stone 7. I’m skinny. I work out 4x a week and have always had a
Perfect blood pressure before. 🤷‍♀️

[Marchlove]

You don’t need to get out of bed and sit in a chair. Just have the machine ready next to you in bed and prop the pillows up behind you and put one under the arm you use to take the reading.

Give it a go tonight x

[joziel]

I think I'm a bit afraid of what the result will be    The week of doing the 2x daily readings was ridiculous in terms of anxiety. Feeling the cuff tightening freaks me out.... I just don't know if it's worth the anxiety - considering I can't do anything about it beyond what I plan on next doing anyway.

Meanwhiles, I've found this paper people are talking about in terms of the balance between estrogen and progesterone and the importance of progesterone: https://www.sciencedirect.com/science/article/pii/S174067572030013X 

I'm a bit worried about the importance it gives to a lifetime of ovulatory cycles, given that I've been on POPs most of my life - although I don't think the levonorgestrel POP I was on for most of the time actually stopped ovulation, so perhaps all will be okay!! Also not sure what the implications are for the bazillions of women using pills that do stop ovulation, it was glaringly silent on that subject.

On the plus side, it does make me feel that, even if the worst comes to the worst and I can't take estrogen, it will be beneficial for me to take progesterone.

And for now I guess it's given me hope that just maybe doubling the utrogestan will help. I'm going to try that starting tonight. I'll attempt to keep the patch at 50 whilst I do that but if things aren't improving in 1-2 weeks I might need to drop the patch back to 37.5. Phew.

[CrispyChick]

I'll read that later joziel. It'll be very interesting for me.

I genuinely believe my prog is really low because I did stop ovulation for years using the combined pill and then the pop.  If it wasnt the fact hrt estrogen poisoned me, I'd never have sought alternative help and found out my prog was so low.

I just doubled my dose last night /this morn.

How old are you? What synptoms are you taking estrogen for? X

[joziel]

I'm 44yo. I had every menopausal symptom in the book.

I couldn't think, couldn't read or concentrate, couldn't put two words together or work, felt permanently jet-lagged. Night sweats. Flatulence, like old lady farts(!), constipation and a slow gut - chronic and despite fibre and all the obvious things tried. Heart palpitations of the skipped beat kind. Zero libido. Dry eye, dry mouth. Migraines (only had one since starting HRT in March when I would get them many times a week before.) Joint pain in hands, knees and hips despite normal x-rays and bloods. Inexplicable weight gain. Like I could eat a single apple a day or something and somehow put weight on, something really freaky was going on with the metabolism. And I couldn't see the point in looking forwards to anything. I felt like I was 80 and just wanted to sit in a rocking chair by the fire until it was time to die - it was horrendous.

Estrogen has stopped all that. Which is why I just can't go back there and I'm so stressed about these estrogen symptoms. The good news is they all went away pretty much at the 25mcg patch, so if I do have to go right back to that, hopefully things will still be okay as far as symptoms go.

The article doesn't imply that progesterone is low because we stopped ovulation, it's more that they believe that progesterone only really shoots up high after ovulation during the luteal phase. So if you stop ovulation, you stop that progesterone increase and your body from experiencing that. And their theory is that this predisposes women to bad health in old age, from cancer to cardiac events. It's only a theory though.

[Scampidoodle]

It’s good that the 25 patch stopped all your symptoms because if you do have to go back you know you’ll be ok.
Just to say I have the exact same in terms of heart palpitations and being woken up with a jolt of fear and palpitations. It’s the histamine (for me anyway). I’m taking industrial amounts of antihistamines at the moment during this flare and it’s the only thing that’s truly minimised them xx

[CrispyChick]

OK, so I totally understand why you wouldn't want to eliminate estrogen joziel. It seems to have served you very well. Why did you increase from 25mg??? Is it an option to reduce to that now?

It does very much sound like you needed the estrogen but have perhaps balanced too far the other way - in the same way gilla is thinking she has.

Gill - have you started the extra prog yet???

[joziel]

Scampi, I don't think my early waking is histamine. I don't often get the jolt or the anxiety, it's more that I wake up either because 'it's time to get up' (even though it's too early) and/or because I feel throbby.

Crispy, I had/have a Newson Health doctor who seemed to just assume from the start that I would need a high level - I think because I'm young still. She did know that I had to increase gradually because I had a history of migraine, so I was started at 25 for 2 weeks, then told to increase to 50 (whatever I felt like) and then after 6wks to increase to 75. There was the expectation that I would probably need at least at 75 or 100.

Even when I had my follow up at 3 months and I told her about all this and my trip to A&E on the 75 patch (after which I reduced to 62.5), all she said was that I should increase very gradually and feel ready to cut patches into tiny bits to titrate upwards. I think probably because my blood estrogen was only 233nmol on the 50 patch. And Newson tend to want you around 400.

It was weird because I told her that I'd felt better immediately, as soon as I'd started the 25mcg patch, and it was like she didn't quite believe me - she said 'oh, it was probably the testosterone' that was making me feel better. But I hadn't started the testosterone then - I waited a few weeks before adding that in - so it can't have been that. I didn't say anything because it seemed silly to argue about that and a bit irrelevant at the time.

But the thing is... Having read that research article I posted above, it seems that body identical progesterone can really help bone density too - it's not all about estrogen. The article did make me wonder about all the research I've been reading about estrogen levels and bone density, where they don't even mention if the woman is on progesterone and what type of progesterone (synthetic or body identical) when they were looking at the bone density changes. Maybe some of their results were due to the progesterone and not the estrogen...?? So I feel a bit better about things if I can't stay at 50.

Plus, perhaps I will just need to be stable on a low dose for a good length of time like even a year or so, before being able to try an increase again. Maybe it is something about needing more estrogen receptors to come online again....

[Marchlove]

Joziel- reading your last post I relate to it so much.

I feel stable on 0.25estradiol and 1mg estriol bi:est cream.

So, yes when you say initially you felt good on the 25mcg patch I can see the resemblance.

 The progesterone is the issue with me. After so much trial and error, I now very much feel that I need the progesterone, but it’s a question of my body slowly getting used to it again (I’m 65) and very very gradually increasing. On a very low dose of estrogen this is easier to do.

Great thread, thank you Gilla, hope you’re ok tonight xxx

[joziel]

Marchlove, I see. I'm okay on progesterone. Fortunately that seems to be a problem I don't have, whether synthetic or body identical I seem pretty immune to anything it does - except sometimes I think it makes me constipated, but that's probably just when I don't have enough estrogen to balance it out.

I'm about to try doubling the utrogestan and I'm a bit worried about doing that and also reducing estrogen, so I'm going to try to stay at 50 for at least another week (at least I'm getting some sleep at 50, unlike 62.5) whilst I double the utrogestan. If I still have these issues after a week with double the utrogestan, I'll reduce estrogen to 37.5. That's my plan anyways....

Gilla, not heard from you in a while (or maybe we have all just posted loads  ), how are things?

[Marchlove]

Good plan. Could you perhaps  start by slowly adding some more Utro (pin **** and squeeze some out), then you might remain stable on your current estrogen dosage.
X

[joziel]

☹️🤷‍♀️ arrrggg

I doubled my utrogestan tonight and it’s a really bad night. Throbby and tingly and the fluttery palps and can’t sleep properly.

It’s probably just a coincidence that it’s especially bad. There was a time I forgot to take it at all until about 3am and it was equally bad so I don’t think it’s the P causing all this.

But it does mean it’s not going to be an easy or quick fix. I’ll carry on with double the P and stop the desogestrel but I’m probably going to have to reduce from 50 estrogen.

The other thing to say is that I’ve
Been so exhausted I’ve had to sleep mid afternoon for a couple hours these
Last two days. It’s been fine. No throbbing. No palps. So this is something to do with night time and circadian rhythm. It’s not just sleep.

[Marchlove]

How horrid.

Have you done the 24 hour saliva cortisol/Dhea test? You’d probably have to do the Dutch Test (top of the range one), which does a night time waking test as well.
X

[joziel]

Hi - no, I haven't done that or heard of it! I think before doing anything like that, they would take me off HRT just to see if I become fine again. If so, it is somehow being caused by the HRT....