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[Peacegirl]

Hi Peacegirl, how interesting! What symptoms came back on Prempak? You're so lucky they went away again on a different preparation! How brilliant. I hope that you stay really well. xxx

Ahh thanks for that Edelweiss 
I think at the time it was suggested by my GP that this was my own hormones taking another dip so I got a return of night sweats and flushes (5 a night!) aching bones (this was a new symptom) and I never had less than 5 ulcers in my mouth at any time so I lost a bit of weight lol. The evorel regime I switched to was a higher does and worked a treat. Had I not lost so much hair I would have stayed on it. The gynae who was aggressively anti-HRT said my receptors weren't working, (and she had no evidence for this) was wrong I think. I can see how it may be true for some but maybe as suggested already an occasional break is helpful or just a different regime higher does? This thread has made me aware though not to bounce up the estrogel just because I can - want to take the minimum I need obvs  And yes lets have some more bloody research - I swear that if men had it there would be much much more done!

[Peacegirl]

Tempest, thanks for the info about Adrenopuase, this makes perfect sense and kind of explains why I felt I had to give up my well paid but stressful job - it just felt too exhausting which I put down to getting older (an i guess that is what's happening) I do see women older than me powering through their 50's/60's but of course we are all different! I now work half the hours for a third of the money and life is more manageable!

[edelweiss]

I got a follow up letter from a Harley St practice the other day that said that one approach to my problem is 'stopping all estrogen and let the body reset the receptors'.

I asked politely for evidence of how the body resets the receptors, as I found it hard to understand how it works in practice. I've not read it happening even once on this forum.

They sent me a paper about middle-aged rats. And it wasn't about stopping estrogen and it being more effective when restarted. Er, so not quite the evidence I was looking for...

Surely consultants can't write these things if they don't have evidence or experience of them working in their patients?

[Hurdity]

Hmm  - yes everything in medicine should be evidenced based and from studies, otherwise any pet theory can be used. The consultant must have a reason to say that though?

I'm still surprised now by the tachyphylaxis thing - because in the case of estradiol replacement (as opposed to the conventional definition) Studd specifically refers to supraphysiological levels. If this is not the case - and it can occur any time - then why are we not all suffering and also it can only be due to exogenous oestrogen otherwise the same thing would happen with our own, at ovulation?

An interesting area of dicsussion...

Hurdity x

[edelweiss]

Hi Hurdity, yes I agree. All medical advice should be evidence-based.

I too thought the consultant must have a reason to say it, and that's why I asked for more information.

I have the "it's tachyphylaxis" in writing from one of the authors of the original papers you refer to. This was at 500 pmol/l. The other author told me 'tachyphylaxis - it doesn't exist'.

I've found it helpful to reflect on the definition of tachyphylaxis "rapidly diminishing response to successive doses of a drug, rendering it less effective".

And I've also seen that tachyphylaxis isn't limited to estrogen. People using other drugs including anti-depressants can experience tachyphylaxis. In this case it is well-documented. e.g. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4008298/

Yes, those are very good questions about the incidence, and why doesn't everyone get it. Not everyone who takes an AD gets tachyphylaxis either  (genetic differences? other factors? and because they are lucky - this has wrecked my life)

Yes I thought that about exogenous estrogen too. There's no answer I can find, but yes I agree with you.

Because I've been so badly affected, I am obviously deeply emotionally invested in this. I am very confused and frustrated by the lack of consensus, evidence and science around this issue.

But I recognise that I need to find a way to accept what's happened as otherwise I won't be able to live a fulfilling life from now on. But it is extremely hard when it affects every aspect of my life so negatively. I know I'm not the only one affected - others here are suffering too xxx
 

[Tempest]

Dear Edelweiss!

Sitting here today with Hubby after a good day (for me) yesterday but feeling horrible today. Only one more day tomorrow before I see Professor Lumsden. As usual, I actually feel WORSE overall on estrogen only but keep telling myself its early days although that familiar pattern of feeling ramped up, sick to the point of distraction and mad palpitations is creeping back again. I kept hoping that somehow this time it would be different and have approached it positively this time with as much hope as I could muster.

The sun is shining, people are out enjoying themselves which I certainly don't begrudge them but it's jarring isn't it?

Did you ever get a peep out of Diane Danzbrink? I haven't heard a word and was hoping for a call back at least as mine and her stories are pretty much identical.

To be honest I'm not even looking forward to my appointment with Professor Lumsden as I remember last time she told me that 'we're running out of options'. I doubt very much if she'll entertain the notion of progesterone even though it was the answer in Diane's case, as I didn't have prior endometriosis..

What ARE we going to do???

[edelweiss]

Oh Tempest, I'm so sorry. I do so wish there was an easier route for you.

I did hear from Diane, by text - but only very briefly. I'm sorry you didn't. Can I help at all?

I know exactly what you mean about looking at people out enjoying themselves - in bars, restaurants, parks. I look at them too and think similar things. It is jarring and it's impossible to believe the difference in their experience and ours.

I used to love eating out, but now I have no appetite it seems pointless. But I am going to get out today and be part of the world. I am going to try and chose to believe this will end one day - or at least change in some way - and i can rejoin the fun. Hmmm as i write that it seems unlikely but I am going to try and do it anyway.

I understand what you are saying about your appt with Prof L. Completely. There are only 2 things I can suggest which are she might be more flexible than you think, and the other is have you a list of the things you wanted to discuss?

I'm always curious about their other more complex cases. What tended to work for those ladies? Or are we just so special that there are no precedents.

Sending you very much love and wishing for health and happiness for you xxx

[Annie0710]

Hi Tempest, glad you managed last night without hubby


I really don't think it should matter whether we had endometriosis or not to qualify for progesterone.  I'm way less educated on all this than you but progesterone' sole purpose isn't just womb lining.  It's known to have calming elements to it for one. 

I can't help but keep reliving my history.  The minute my progesterone plummeted and/or the same time my ovaries went AWOL, my life changed drastically and dramatically

In my opinion, it's about balancing hormones not just keep throwing large doses of oestrogen at us ladies with no uterus.  We both know first hand the horrible symptoms of high oestrogen gives us xxx

I've never really thought much about compounded hrt but in many ways it makes sense if you get an overall, over a period of time, picture of hormone levels and work with that adding in appropriately to give balance.  So many other conditions are tweaked to get an ideal level (be it numerical level or health/functional  level)

[edelweiss]

Tempest - I just texted Diane and asked for you. She says she can speak to you at 2.30pm tomorrow Monday. Good luck! xxx

Hello Annie, I'm so sorry things changed so drastically and dramatically for you. This was in 2012 wasn't it? xxx

[Annie0710]

Yes 2012. 13 years after feeling great on oestrogen only hrt

Do glad you got hold of Diane for Tempest xx

[Tempest]

Oh my goodness, you did that for ME Edelweiss??? I cannot believe your wonderful kindness!! Thank you, thank you SO MUCH!!!!!

Hubby is here and reading all your replies too (I hope you don't mind). He says that he feels he knows you all now and says you are simply wonderful and strong ladies. Annie, he always asks about you in particular as we have known each other for over a year via this forum and every bump, every HRT attempt and every hospital crisis admission, you have been there for me (I worry that I've been an awful drain on you, though ).

He says to tell you that he himself is going to ask Professor Lumsden what can be done and why there isn't help for women who are 'complex cases' as he now knows it's not just me. He's  particularly going to ask, what happens if the HRT just doesn't work and the women are living awful lives as he has taken your story to heart Edelweiss. And he's going to challenge the whole idea of just replacing estrogen too Annie as he thinks the whole notion is ridiculous as both you and I have never felt well on it. (He asked my Gynae. about this a few weeks ago and he admitted his speciality wasn't HRT but that the 'party line' is that its not needed when there is no uterus).

I hope Professor Lumsden is prepared for a big hairy Scottish guy asking her so many questions on women's issues! He said to me that so many guys he has met this past 2 years have said that their wives are in menopause and really struggling too (he isn't afraid to talk to people about this. One of his friend's wives has spent 6 months in the psychiatric hospital due to perimenopause).

I hope we get answers! We need them.

Thank you so much for all your love and support and I very much look forward to speaking to Diane, Edelweiss! xxxxx

[Annie0710]

Say hi right back to hubby!
I feel like I know him too !

Tempest, you really have to not worry about putting all your thoughts, ideas, rants, worries etc to us.  We've always said we're always here for you and that remains.  You are very highly regarded here and we've walked virtually alongside you in your journey.  You give so much to this community you deserve so much more in return

You're special, and not just because your situation is complicated *wink & kiss*

Xxx

[edelweiss]

Dear Annie - hear hear!!!

Dear Tempest, it's a real pleasure. It makes me feel better too! I am so happy to help in any way I can.

I have pm'd you the details to confirm and her mobile number to make sure you have the right one.

Hello to your hubby too and thank you to him for reading my story, and speaking up for us. We need support from men, as well as from each other. Our husbands and partners can be strong and objective voices, when we are feeling less strong. I love the idea of your 'big, hairy Scottish guy' making the case for you and all of us - thank you to him!

To be fair, I guess the doctors really want to help though. The vast majority of women just don't have these problems.

Ladies, Diane sounds absolutely lovely and very genuinely wanting to help. xxx

[Pinkfizz]

Thanks ladies, I appreciate your replies. I have another 6 weeks on this dose, I will wait a couple of weeks and then go back to the doctors.

My reluctance has been, I didn't think I would need to increase so quickly... especially when it was going so well.

Question...do most women move up to the higher dose? When I went to see my doctor at the start, she said that she doubted I would move up in dose.

Regards xxx

Ladies - Sorry to  resurrect  this post, however further to me wondering if I needed to go up in dose. Everything seemed to correct itself and I was fine. I did nothing and life was good again. HOWEVER, I have noticed my symptoms return a couple of days into the Progestogen part of my HRT. I even have a bleed (more like spotting) a week before I finish the Prog part. However I have always been a bit hit and miss with a bleed at the end anyway. But is spotting worrying?

I am not saying my symptoms are bad…but is this all a bit odd??

Cheers xxxx

[edelweiss]

Hi Pinkfizz glad you had improvement without going up a dose. I'm not sure about the spotting - worth a trip to your GP if you're worried I'd say. Loads of love xxx