Print

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

[joziel]

She is most definitely my best doctor yet   

The bicarb of soda is what you're supposed to do a sitz bath or douche with if you have cytolitic vaginitis - but I'm reluctant to do that without knowing that's what I have or I could upset the pH in the wrong direction 

[Marchlove]

Yes you could!

CV is not a recognised condition but it very much exists! I’m afraid it’s a suck it and see situation.  If you decide to trial this, do what I did and just drink some in water rather than going all out with sitz bath or douche?
That way you’ll get a lesser effect but you’ll see if you’re on the right path. X

[Pippa52]

joziel - WOW I am so pleased that your GP was so good and actually listened.  It sounds as though you really covered a lot in your time which is great.  Very best of luck coming off the oestrogen patch and so hope that it really helps.  It is just such a relief to talk to someone who works with you and understands isn't it x

SO MY UPDATE
Cardiologist was wonderful so kind and reassuring.  He looked through my Kardia ECG's and BP readings and said there is absolutely nothing wrong with the rhythm of the heart no AFib etc just a fast heart beat and although my BP seemed horrendous to me when he took it (170/90) he said it was nothing to worry about because the peaks go down really quickly and the rest of the time it is normal.  Now the really interesting bit - he said he has seen a lot of ladies who have had to change HRT makes or doses have been presenting to him with very similar symptoms and he feels that the most likely cause for me is just that.  He is pleased I am back on my original HRT (Oestrogel) and wants to see me in a months's time.  He also is arranging Thyroid tests and 24 hour urine collection.  He said those are to just be very thorough but he does not think it is either of those causing the problems.  In the meantime I have to sweat it out (literally lol) and give the oestrogen time to level out and to stay at the dose I was always on originally.  Although it's grotty having to be like this I absolutely see his point and he felt that this should settle down over the next 4 weeks or so.  He thinks also there is a component of anxiety in there due to the symptoms but that should settle too.  He is arranging some counselling CBT to help.  I feel hugely relieved (as I am sure you to do after your appt) in that someone has listened and understood and has some answers.  Maybe just maybe we both might get a bit more sleep tonight!!! xx

[Pippa52]

I imagine you have both already tried this, but just incase not, what about magnesium? It does seem to help a lot of people with problematic heart beats.

Thank you Gnatty will definitely look into this xx

[Pippa52]

Hi both, I’ve been off the site for a while. I know you were exploring histamine for a while joziel? Just because your symptoms are so similar to mine. I get the heart throbbing and fluttering. Always worse in the night and waking. Mines all down to histamine and mast cells. I can’t take estrogen as actually my own is what’s causing the problem! I mistook for peri a few years ago.

Have things gotten worse since coming off the pill or better?

Is coming off the E all together an option joziel?

And interesting what you said a while back Pippa about you were ok until oestrogel changed the formulation. I was ticking along on Estrogel (with a few what I now know as high histamine symptoms) but when I got Oestrodose from the pharmacy I felt absolutely awful. Mentally I was so depressed, anxious, jittery. Allegedly the same stuff but clearly there is a difference to those of us who are sensitive.

Anyway I went up to three pumps when back on the estrogel and then it all hit the fan and my histamine levels hit the roof. I’m now off all estrogen and probably never needed it as my FSH is low and actually estrogen (especially rising estrogen) is my enemy now! Not saying this is your issue but just some more info anyway x

Hi Scampidoodle - re the Oestrogel they changed the formulation from estradiol 17b to estradial hemihydrate which I have since found out makes it slightly weaker and all I would have needed to do was up the dose slightly but sadly although I did ask the GP and the Pharmacist this did not seem to be known last year.  I have read that Oestrodose seems to be weaker too as many ladies have reported their symptoms returning.  I am so glad that they have found out what your problem is and hope so much you are starting to feel better off it? xxx

[Scampidoodle]

I’m pleased you both found doctors who have listened and are willing to help. I wish you both luck!
Was your cardiologist on the nhs Pippa? If so then he was very thorough, you’re normally in and out! Interesting about the different formulations and how they can impact those of us who are very sensitive to changes.

[Pippa52]

Scampidoodle ….Thank you for your kind words Sadly no I had to go private waiting list on the NHS was many months and to be honest have been feeling that ill I just really really needed answers and reassurance as this has been going on for months now. Yes you are so right even small tweaks in doses can have a big effect for some of us especially when also having to change types as well xxx

[Marchlove]

Thank you for sharing with us all Pippa. This is so very useful to all of us.

So pleased your consultation went well and that your cardiologist is so thorough.

It’s a new insight from him that the change of delivery and dosage can cause such symptoms and that he’s been experiencing it quite a lot. I think quite a lot of members had experienced this.

But what’s more astonishing is that a cardiologist has such knowledge of hormone issues and has recommended thyroid and adrenal tests.

Sounds like a find Pippa!

Good night lovely ladies xxx

[joziel]

That's great Pippa! So, do you go back to see him in 4 weeks time? It must be really reassuring to have had someone tell you it's okay and although it feels bad and distracting, you're not going to collapse or anything...

How does he know that your blood pressure comes down soon afterwards? Are you measuring it at home? I feel like mine is constantly too high. My fingers feel tight, a bit like rubber gloves blown up a bit... my feet and ankles feel trembly and twitchy and I feel like there is something on my back or across my back, some constant pressure. When it eases, it is sooooo calming and relaxing and I think 'wow, this is how I used to feel all the time....'.  I don't think the heat helps either, I'm sure being hot increases your blood pressure and it was really hot today.

The GP today tried the 'it could be white coat syndrome' thing, but I was like.... mmmm .... nope. And anyway, if you look at the blood pressure I had taken just before I went onto HRT, it was literally perfect - and that was at a doctor's. I have come to recognise what it 'feels like' to have high blood pressure now...

It is interesting he has seen so many women on HRT with this. But I'm not sure he's got to the root cause of it.

I reckon Scampidoodle's histamine intolerance idea is still very interesting. I know I tried a low histamine diet and it didn't do anything, but if I have all my life teetered on just about being okay with histamine - and then I add in extra estrogen, including going up to quite high doses of patch - when my ovaries perhaps have also started to make my own... well perhaps just eating low histamine wouldn't have made much difference at that point. It was just a drop in the ocean. And now I've had quite a flare up through staying on it and maybe mast cells have gotten involved, who knows.

I am going to increase my vitamin c doses to 4x daily (natural anti-histamine), take DAO before eating (since I bought it anyway and then never used it!), keep going with the quercetin 2x daily, take the L-glutamine I bought but keep forgetting to use... but I can't do the low histamine diet again, I just can't    Maybe I will if all that lot doesn't work...

If I have to go back onto HRT because I get peri symptoms coming back - and at some point I will need HRT - I will try to see if I can see Tina Peers or someone in her meno business who can try to help me do that alongside trying to keep histamine low and maybe some mast cell stabilisers. I probably will only be able to have a very low level of estrogen, but it's got to be better than nothing. I also think something I can take in the morning - estrogel or Lenzetto - which will hopefully wear off slightly come the middle of the night, is a good idea too - rather than patches. If histamine peaks at night, and a patch gives you estrogen 24/7 constantly, that's probably not a good combo.

It might not be histamine, but if it isn't that, I'm stumped for any explanation whatsoever - and I have to work on the basis of something...

[joziel]

Definitely no better yet. Pulsing and throbbing. I can feel the blood moving around my body. I wonder how long it will take for this to go. I’m a bit worried about living with high blood pressure like this.

ElkWarning, how long after you stopped HRT before your blood pressure returned to normal? I saw from your posts that even bp meds weren’t enough to control it when you were on HRT?

[Gnatty]

Pippa just a thought about you getting back to three pumps of oestrogel - now that you are applying it differently you may be actually absorbing more than you were previously, this might have a bit of an impact so that maybe you might not quite need three pumps but more like two and a half, particularly to start with.
Joziel, from your post it looks like another night of rubbish sleep. I do hope the hrt gets out of your system soon it must feel never ending. X

[Marchlove]

How’re you doing Lilleth, not heard from you on this thread for awhile.
Has your insomnia settled?xx

[Pippa52]

Pippa just a thought about you getting back to three pumps of oestrogel - now that you are applying it differently you may be actually absorbing more than you were previously, this might have a bit of an impact so that maybe you might not quite need three pumps but more like two and a half, particularly to start with.
Joziel, from your post it looks like another night of rubbish sleep. I do hope the hrt gets out of your system soon it must feel never ending. X

Gnatty … thanks so much for your message. Funnily enough I thought exactly the same and I reduced the dose down last night to 1 and 1/4 pumps twice a day so that cuts out half a pump. I’m stupidly sensitive to small dose changes so hopefully that will now be enough. The ‘pat’ method of applying works really well there is none left over. I also slept through till 6am xxxxx

[Pippa52]

Thank you for sharing with us all Pippa. This is so very useful to all of us.

So pleased your consultation went well and that your cardiologist is so thorough.

It’s a new insight from him that the change of delivery and dosage can cause such symptoms and that he’s been experiencing it quite a lot. I think quite a lot of members had experienced this.

But what’s more astonishing is that a cardiologist has such knowledge of hormone issues and has recommended thyroid and adrenal tests.

Sounds like a find Pippa!

Good night lovely ladies xxx

Ah bless you I hope it will help others. Thank you so much for the lovely message .I was so very lucky to see such a lovely cardiologist he could not have been kinder or more informative . I feel a lot less stressed today which I am so grateful for …still getting some physical symptoms but quite expected that it won’t clear up
Overnight . Xxxx

[Pippa52]

Definitely no better yet. Pulsing and throbbing. I can feel the blood moving around my body. I wonder how long it will take for this to go. I’m a bit worried about living with high blood pressure like this.

ElkWarning, how long after you stopped HRT before your blood pressure returned to normal? I saw from your posts that even bp meds weren’t enough to control it when you were on HRT?

Joziel …. So very sorry to hear your symptoms haven’t improved as of yet. Fully understand your concern about the blood pressure as I was just the same. If it’s any consolation the cardiologist was very clear that neither the high blood pressure or the fast heartbeat was anything wrong with either the heart or the blood pressure it is purely an affect from the changing levels of oestrogen and the changing of the delivery method. He said as long as your BP is not consistently high all the time and only spikes and then goes down reasonably quickly it is  not classified as high BP.  The reason my skin reacted to Lenzetto was because there is a sunscreen chemical in it and I can’t use chemical sunscreens anyway but had no idea there was one included in the Lenzetto. I prefer the gel anyway as so easy to control the dose. As we all know it does take quite a while to level out and he seemed very confident that that is what would happen over the next month so time will tell. As your symptoms are quite similar it may well prove the same for you when you have been off the patches for a while? . Honestly I think all us ladies could all be writing an ‘how lo cope with menopause ‘ book!!!  What a journey !!!!