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Author Topic: New member, any advice or thoughts appreciated!  (Read 2001 times)

Hopefully

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New member, any advice or thoughts appreciated!
« on: September 09, 2017, 02:36:08 PM »

Hi
I'd really appreciate any advice or thoughts on my current menopause/HRT problems!

My history: terrible PMT but sorted for most of my adult life with low dose combined pill, had twin girls at aged 38, started perimenopause 7 years ago when 47 (main symptoms: hot flushes with palpitations/anxiety in night, arthralgia).  These symptoms were sorted completely with evorel conti patches, last for a year or two, stopped working.  Went onto Indivina, first 1/5mg, then 1/2.5mg when periods stopped 4 years ago.  Sorted problems out completely for over 2 years, no symptoms until a year ago when quite dramatically symptoms emerged again.  Now including palpitations sometimes during day as well as night, dizziness, headaches, arthralgia in feet, generally feeling very unwell, short tempered, bad memory.

Menopause clinic where I live thought I'd got a 'tolerance' to HRT as when I tried evorel conti patches again they worked for a day or two, then stopped, tried Sandrenagel and back to Indivina same thing.

Went to Professor Studd this January, blood tests showed my estradiol levels were low at 135pmol/L so started on his oestrogel/utrogestan/testim programme but had new really bad side effects which eventually found was sensitivity to utrogestan.  It was having it for the 1 week which caused problems, I actually felt fine on the week taking it but it was the 10 days leading up to it that was horrendous.  My oestrogel dose was upped initially from 2 pumps a day to 4 pumps, then came down to 3 as my estradiol levels were up to 571pmol/L after 3 months. I continued to suffer really bad symptoms but Prof Studd was loathe to move me off utrogestan, I tried taking it vaginally with worse symptoms but did get some improvement on taking it continuously in lower doses.  This seemed to make sense as previously my symptoms have been sorted with continuous oestrogen/progesterone and it was the fluctuation in hormones which seemed to cause me the worse symptoms.

My GP has been very supportive and I've had numerous tests (heart, arthritis, thyroid, tinnitus etc) to rule out anything else but the symptoms always seem to be linked back to hormone/HRT.  I managed to get an appt with Mr Panay in May and he thought an intolerance to progesterone might be the issue as there seemed to be a link between taking the utrogestan and swollen feet/headaches/buzzing in my ear so switched me first to dydrogesterone, which was no better, and then to provera.  Although I also suffered swollen feet/bleeds with provera it settled down after a while but then the other symptoms emerged.

Three weeks ago my estradol bloods were up in the 600s and over 800 after taking the oestrogel, 3 pumps a day, but the symptoms were worse, back to being woken 3 times a night, although did improve when I reduced the dose right down to nothing, then 1/2 and then 1 pump a day. However, I then started getting horrible PMT symptoms again and bleeds starting in the afternoon/evenings. Mr Panay in his note to my GP said the thought I was experiencing 'an element of tachyphylaxis with oestrogen receptor insensitivity.  The reduction in dose and then cessation of oestrogen will have helped to re-sensitize the receptors and therefore cleared up her symptoms'.  He suggested that I slowly increase my oestrogel dose up again to a maximum of 2 pumps a day.

However, this has not improved symptoms, and the last blood test I had this week showed I was up close to 500pmol/L again so Mr Panay suggested I go back down to 1 pump a day or an alternative try the evorel conti patches.  I put one on yesterday, felt fine all day but have woken up early this morning with a number of the usual symptoms recurring with a vengeance, including headache, lethargy, backache, buzzing ears, increased appetite, libido, palpitations, I feel terrible!..........almost like PMT which makes me think this patch may have pushed me into the tachphylaxis state again? I really don't know anymore! 

Looking back over the last year I realise that HRT has not properly got on top of my recurring symptoms and it's not clear what is causing some to occur, disappear and reoccur.  If Mr Panay is right about the tachyphylaxis with oestrogen receptor insensitivity, this may well be exactly the same diagnosis I got almost a year ago from my local menopause clinic ie I had just built up a tolerance to HRT, the same dose didn't work any more.  Maybe right now I should take off the evorel conti patch I put on yesterday and go cold turkey and see what happens!  If I feel better than I do now, which wouldn't be hard! then at least I know the patches are probably causing too high estradiol levels again and by removing all HRT treatment I allow my oestrogen receptors to properly re-sensitize.  Not looking forward to this but may be the sensible thing to do?

Has anyone else had a similar experience? What I have read on tachphylaxis implies it normally occurs with implant use and with levels of estradiol exceeding 1000pmol/L, my case obviously isn't so pronounced but the symptoms I'm experiencing now, when presumably my oestrogen receptors turn off completely, are pretty horrendous, almost like withdrawal symptoms!

I will stop writing and see if anyone can offer some advice, thoughts on this, it will be much appreciated!
Thank you


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Kathleen

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Re: New member, any advice or thoughts appreciated!
« Reply #1 on: September 09, 2017, 05:43:30 PM »

Hello Hopefully and welcome to the forum.

Unfortunately I am not one of the expert ladies so I'm unable to advise you but  you are among friends who can completely understand your frustration.

Hopefully someone will be along soon with some practical help and in the meantime I wish you well.

Take care and keep posting.

K.
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Taz2

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Re: New member, any advice or thoughts appreciated!
« Reply #2 on: September 09, 2017, 05:51:57 PM »

Hi Hopefully - welcome to the forum.

I'm not able to answer all of your questions but someone will be along soon with more knowledge.

Although it's difficult to experience the PMT type symptoms it can take up to three months before you really know whether a type of HRT is suitable for you so the advice is always to persevere for the three months if at all possible. I would say, though, that Evorel Conti contains the progesterone Norethisterone which causes PMT symptoms in many women (me included) so it could be that this one will not be right for you. I found my symptoms did lessen over time but, in the end, I swapped to FemSeven which has a different progesterone (Levonorgestrel) and this got rid of all of my PMT feelings. From reading your post could it be that it's not actually tachyphylaxis but more the effect of the norethisterone?

You will get lots of help and support on here I'm sure.

Taz x  :welcomemm:
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Lanzalover

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Re: New member, any advice or thoughts appreciated!
« Reply #3 on: September 09, 2017, 06:42:08 PM »

Hi Hopefully


 :welcomemm:  from me too.


Lanzalover x
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Maryjane

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Re: New member, any advice or thoughts appreciated!
« Reply #4 on: September 09, 2017, 07:28:42 PM »

Hopefully 😊I don't no anywhere near enough to comment about what to do , but I am on a roller coaster ride also re HRT ( I have to find something that works re dreadful vaginal issues ) my oestrogen levels at one point where 2,500 😳 felt like a cat on hot coals that was on a low does , I don't no about you but I am very slim and I do wonder if I am so sensitive to all drugs as I react to anything , sleppy antihistamines knock me out almost for 36 hours.

I am on one pump a day of oestrogel and utrogestin 100mg 10 days a month and it wipes me out feel awful guts especially, very tired .

Having a scan next month to see what's what and a mirena is a possibility but just don't no .

Good luck with it all. 🤔
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Hopefully

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Re: New member, any advice or thoughts appreciated!
« Reply #5 on: September 10, 2017, 11:52:00 AM »

Thanks so much for all the replies and welcome, much appreciated, I think you may well have a point Taz2 about the progesterone in Evorel Conti possibly causing the symptoms.  I've now had 24 hrs with patch off and haven't had a bad night, so fingers crossed this continues.....

Thanks again :)
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Lanzalover

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Re: New member, any advice or thoughts appreciated!
« Reply #6 on: September 10, 2017, 01:13:53 PM »

That's good news.

Lanzalover x
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