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Author Topic: Feeling at a low ebb  (Read 3532 times)

Gilla999

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Feeling at a low ebb
« on: December 05, 2020, 08:24:42 AM »

Still struggling with terrible night sweats and waking up throughout the night. Nothing seems to be helping and I'm at a loss with where to go with this now and feeling at a really low ebb. This wakefulness and night sweats initially only happened from day 21 of my cycle to day 2/3 but has now grown to be from day 14 onwards, which means I'm now spending half my life feeling utterly crap from lack of sleep. From day 2/3 to day 14 I sleep totally fine with no night sweats or problems.

As no GPs will engage with me because I'm 42 and my periods are still regular I've paid to see a private hormone doctor but it's so expensive I can't continue to pay for multiple consultations. If anyone has any suggestions or thoughts I would really appreciate hearing them:

After having really swollen painful boobs blood tests in 2018 and 2019 showed I had estrogen dominance in the second half of my cycle

2019 was when all of these cyclical night sweats and wakefulness episodes started

Sep 2020 I was prescribed 75mg bio identical progesterone as a lozenge by the hormone specialist - this didn't help the night sweats

Nov 2020 - paid for private blood test 2 days before period, showed estrogen right at the lowest end of healthy range and progesterone just under half way of healthy range

Nov 2020 - tried Estradot 25mg for 4 days, didn't help the night sweats/wakefulness and got crazy swollen painful boobs like I used to have in 2018 and 2019. Blood test showed Estrogen was too high so I stopped taking it. Progesterone still just under half way of healthy range.

Dec 2020 - raised Progesterone to 150mg which initially seemed to help for a couple of nights - I was still sweating and waking but at least able to go straight back to sleep, but last night I sweated tossed and turned all night again. I'm sleeping with just a sheet and a blanket next to an open window with the fan on!

I know I've not helped myself with all the chopping and changing but it's symbolic of how desperate I am just to have some stability with my sleep. At best I just feel crap during the day, at worst I'm unable to function and I'm having to take a lot of time off work.

I was initially prescribed Mirtazapine - a sedating antidepressat - back in 2019 when all this started, but now that's even stopped working.

I know that this is hormone related because it only happens at the same time during my cycle and during day 2/3 - day 14 I sleep like an absolute log with no night sweats and feel great.

If any of this sounds familiar or anyone has any thoughts or suggestions I would really love to hear them - feeling very down
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Uptick

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Re: Feeling at a low ebb
« Reply #1 on: December 05, 2020, 06:04:18 PM »

Hi Gilla999, I've also started having peri symptoms around this age and imho what you are experiencing is due to extreme oestrogen fluctuations, which hardly can be controlled by 25mcg Estradot or any amount of progesterone. I don't remember if I had the same pattern of feeling great/crap (poor memory around this time was a big issue), but I wonder if you could try a completely off-licence regime of a higher dose patch plus the prog lozenge just during days 14-26 of your cycle, if the hormone specialist agrees with it?

Excellent article about this

https://bcmj.org/sites/default/files/public/BCMJ%20_47_Vol10_Clearing_Confusion_Perimenopause.pdf
« Last Edit: December 05, 2020, 07:24:36 PM by Uptick »
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Gilla999

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Re: Feeling at a low ebb
« Reply #2 on: December 07, 2020, 08:24:06 AM »

OMG, bloody heeeeell! This article!! Did someone write this ABOUT ME?!  ;D Word for word this is what I have been going through! Thank you so much for sharing it. First it was the shorter cycles. Then the super painful swollen breasts. Then the swollen breasts seemed to gradually decline (lowering of estrogen) but at the SAME TIME I got the onset of this debilitating cyclical night sweats and mid-sleep wakening (between day 2-14 I'm totally fine and have no symptoms). This report mentions the hypothalamus becomes used to higher estrogen levels, so even when they start dropping from high to normal, we get the same symptoms as low estrogen. This matches exactly with the timing of all the things I've experienced.

The only thing that makes me a bit sad about this article is that there were no treatments recommended. While having some kind of resolution and understanding to what the hell has been happening to me, what I'm experiencing is so debilitating that I can't just ride it out. I'm taking so much time off work and not able to have any kind of social life etc because I'm only getting 2-3 hours sleep a night for 14 days out of every 29, because I wake at 3am - something which I've never had problems with my entire life.

I'm paying for another consultation with the hormone doctor tomorrow so will see what she says and may well suggest your recommendation. Is it something you've had experience with or seen others take? (I wasn't aware you could take Estrogen cyclically). The only trouble is that when I took 25mg Estradot for a few days and then had a blood test, my Estrogen levels were 502.98 pmol/L. My progesterone (at that time with only taking half a lozenge) were 33 nmol/L. So very much the wrong way around for the luteal phase (as far as I'm aware). Perhaps staying on the 25mg Estradot but increasing the Progesterone so that it's higher in relation to the Estrogen? My only concern is that by taking anythinh cyclically that I'll have a massive hormone crash on day 26 of my cycle. Though 4-5 days of all these symptoms vs the 14-16 days I'm currently experiencing would still be preferable!

I can't thank you enough for sharing that article with me. I have spent many hours scouring the internet since I've been going through this and read a lot of helpful things, but I've never seen something so accurately sum up my EXACT experience over the last 3 years. Why I seem to be experiencing it in such a debilitating fashion is anyone's guess, but I really do hope through HRT I can eventually make this settle down.

I'd love to hear your experience and anything you tried? xx



« Last Edit: December 07, 2020, 08:38:29 AM by Gilla999 »
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Uptick

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Re: Feeling at a low ebb
« Reply #3 on: December 07, 2020, 03:46:52 PM »

Glad it helps a bit, I think it's a very interesting article because it explains why perimenopause is much worse than menopause itself and why HRT is not particularly helpful if you're still having wild oestrogen fluctuations. Maybe that's why many women on HRT say it's taken a long time to find the 'right regime', maybe this is just the time that it takes to reach menopause. Anyway, this article fits me to a T in perimenopause.

Actually they suggest high doses of progesterone (200-400 mg) but I don't think I've seen anyone adopting this regime in the UK, although there's an entire website dedicated to this in Canada http://www.cemcor.ubc.ca/

I've tried 50mcg estradiol patches and 200mg Utrogestan cyclically but it didn't help with hot flushes and early morning anxiety (4 am), and it brought back migraines and a host of new symptoms (digestive issues, panic attacks, tearfulness to name a few) although I can't say they were all HRT (I'm hypersensitive to drugs in general) or perimenopause related. Migraines stopped after stopping HRT, though. I could have upped the patch dose but I thought peri would be over soon (well, I prayed it would be over soon) and I wanted to know exactly when I reached menopause, so I stopped HRT after 3 months. It's been 4 years since my last period. Still have some hot flushes that don't bother me, anxiety has gone which is a wonderful thing, I have always been an anxious person but nothing compared to what happened in peri, I feel much better now and I don't regret having stopped HRT during peri. I think it's easier to find a suitable regime after menopause, when you are not having hormonal fluctuations.

Have you tried to change diet, increase physical activity, practise mental hygiene techniques? I think they're really important at this time of our lives and they can help us cope with all the mess until we reach menopause.

Keep us posted regarding the hormone doctor appointment. Fingers crossed for you.  :)
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CLKD

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Re: Feeling at a low ebb
« Reply #4 on: December 07, 2020, 04:19:47 PM »

I haven't read your whole thread as I'm tired.  However, no woman is too young to have menopause!!! girls can have 1 period then nothing else, some girls don't menstruate at all.  Go back to your GP and ask to see an NHS Menopause Clinic or do a google 2 C if there is 1 near you. 

Make a list of symptoms so that you have ammunition.  There may be a Nurse or another GP who has an interest in womens' health.  It should say on the surgery web-site.

If not change surgeries!?!  Also, put the names of the products you have tried into the search box on here: make notes ;-).  U R now in the 'right' place  8)
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Gilla999

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Re: Feeling at a low ebb
« Reply #5 on: December 07, 2020, 04:23:25 PM »

Thank you so much for your lovely reply CLKD and I don't blame you for not reading my loooooooooong post! xx
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CLKD

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Re: Feeling at a low ebb
« Reply #6 on: December 07, 2020, 04:25:48 PM »

When I'm less tired I will catch up  ;D.

GPs simply don't understand menopause!
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Gilla999

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Re: Feeling at a low ebb
« Reply #7 on: December 08, 2020, 04:30:57 PM »

Just thought I would update that I had a pretty rubbish call with the menopause lady today. She essentially told me "your problems can't be due to your hormone levels". She came to this decision from my blood test results (even though according to my calculations from all the online guides I've read my ratio of prog/estrogen is skewed). I tried to explain some of the things in that brilliant article you shared Uptick, but none of it seemed to resonate with her. She also said that Estrogen "always fluctuates" and that "Estrogen is always higher than Progesterone in the luteal phase", which from everything I've read I didn't think was true but there you go! (Does anyone know?!)

Feeling very deflated after the call I went back and looked at my calendar for the last 15 months again to see if I am somehow trying to convince myself that the night sweats and middle of the night wakenings are happening cyclically, but it's all there in black and white - every single month it's happened at the same time. And I've never had a single problem during days 1-10. And I was tracking these symptoms for a year before I realised they were happening at the same time in my cycle, so it wasn't because I was "expecting" it to happen at the same time every month.

I can only surmise that one off blood test results don't show the whole picture and as that article mentions even women showing a "healthy" Estrogen level can be having withdrawal symptoms from the previous two years of very high Estrogen, like I had.

Despite being resistant to it up till now I have decided to try the contraceptive pill from tomorrow. I've never had a good experience with this previously in terms of side effects, but I don't see a whole lot of other options open to me at the moment. Wish me luck!!
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CLKD

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Re: Feeling at a low ebb
« Reply #8 on: December 08, 2020, 06:09:36 PM »

Some won't be swayed will they, especially if the patient knows more than the Doctor  >:(  ::).  Was she at a menopause clinic?  You may have said already but I am still tired. 

Hormone levels do rise and fall throughout 24 hours, my Gynae won't do blood tests but treats on symptoms.  My GP was very good in spotting what my problems were due to, i.e. vaginal atrophy. 

Which pill have you been prescribed, mayB put the name into the search box if you haven't done already: see what pops up and make notes.  Let us know how you get on.

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Uptick

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Re: Feeling at a low ebb
« Reply #9 on: December 08, 2020, 06:19:57 PM »

Hi Gilla999, I don't have time right now but I will reply later on tonight.

Have a look at this article https://www.glowm.com/section_view/heading/endocrinology-of-the-perimenopausal-woman/item/82

The menopause lady should be reminded that estradiol levels are measured in pg or pmol and progesterone in ng or nmol and that 1 ng = 1,000 pg!
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CLKD

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Re: Feeling at a low ebb
« Reply #10 on: December 08, 2020, 06:38:16 PM »

 :thankyou:
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Gilla999

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Re: Feeling at a low ebb
« Reply #11 on: December 09, 2020, 07:10:29 AM »

Thank you ladies! That's an interesting article Uptick and shows why treatment on symptoms rather than tests like CLKD's GP is so important, because levels can appear normal on one test but still be fluctuating like mad. When she said to me "it can't be your hormones" and started asking me if I was stressed I felt like crying. People very much want to blame this on stress/anxiety/work and I have to explain every time I'm stressed BECAUSE I'm not sleeping and having crazy night sweats for the same 14 days every month, not the other way around! She now wants me to (pay for) a lot of thyroid and cortisol tests, which I will do - but if it were any of those I'm not sure why all my symptoms would only happen during my luteal phase.

Yes I know that a patient armed with lots of info never goes down well with a doctor so I tried not to overdo it. I was genuinely confused by her comments about estrogen always being higher than progesterone in the luteal phase though - all the graphs I've seen don't show that. And yes on the hormone calculations! I had to find online conversions and use my calculator. By doing that my ratio on all my tests seemed to be not in the healthy range publicised everywhere, but she didn't seem to agree.....

Yes she was at an online menopause clinic, and she also practices at Marion Gluck.

The pill I start today is called Zoely - it's the only pill I'm aware of containing Estradiol as the Estrogen (so not synthetic, though the Prog is still synthetic) and is the same dose every day, rather than fluctuating. To be honest I'm not searching it tooooo much in case I see a lot of negative reviews that make me expect bad things. I've never had a great experience with the pill but it's worth a try.... xx
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CLKD

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Re: Feeling at a low ebb
« Reply #12 on: December 09, 2020, 08:03:20 AM »

Morning.  Your GP can do those tests - no need to pay for any treatments in the UK unless speed is required.

Is the product on this Forum?  Zoely - sounds like a sponge cake or a cocktail  ;)
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Gilla999

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Re: Feeling at a low ebb
« Reply #13 on: December 09, 2020, 10:19:03 AM »

Zoely on this forum doesn't get great reviews but to be honest, every drug you search anywhere on the internet usually has bad reviews because people don't usually bother to post positive stories. So I'm going to give it a try and see how I get on. If I can't cope with, I'll switch to a different one.

You're totally right on the tests - I'm not giving her any more of my money  :)
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Uptick

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Re: Feeling at a low ebb
« Reply #14 on: December 09, 2020, 04:27:20 PM »

Hi Gilla999, busy day yesterday. I agree, don't pay for more tests. If she thinks "your problems can't be due to your hormone levels" why ask for them in the first place, cortisol and thyroxine are also hormones after all. Zoely has been off market for some time (commercial reasons) and now that it's back I guess a lot more women will choose to trial it. It's trial and error. Good luck and keep us posted.
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