Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: edelweiss on April 30, 2017, 10:30:59 AM
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Hello ladies hope you are well this BH Sunday.
I hope you won't mind if I write down how I am feeling. It helps a bit.
HRT doesn't work for me anymore. I'm told I've developed an acquired resistance to estrogen.
I've zero appetite for food & drink and total insomnia (haven't felt sleepy or hungry/thirsty once in 4 months). I have constant loud intrusive tinnitus, dizziness, anxiety, tremor, dry and burning mouth, aches, pins & needles, numbness in arms and legs, body shape changing, and VA. Can't concentrate, think or see straight. As you can imagine I'm feeling very low.
There's no pleasure left in life - from food, sex, sleep.
It doesn't feel possible to feel this bad and yet I do - all day every day.
Top consultants (all the famous names), different HRTs, ADs, propranolol, etc have not made one jot of difference. Acupuncture, diet, herbal meds - nothing helped.
Is there anything I've missed?
Can this go away one day?
Any words of hope would be so welcome. I have a life I would otherwise love and a husband I adore. But I can't feel the joy in it all. I can't even believe this is happening to me.
Thanks for reading. Sorry to moan. I hope everyone reading finds balance, contentment and happiness after all their difficulties are over. X
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Hi, Edelweiss!
This is why I'm currently seeing an Endocrinologist and have just had an ACTH Stimulation Test to check my adrenal function. I've posted quite a few things about my struggles if you want to take a look.
I understand exactly how you feel!
Hugs,
Tempest xxxx
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Make a list and take to your Practice Nurse ? Do you have thyroid problems? Maybe see an Endocronologist for advice.
The dizziness and anxiety may be because you are under-nourished, anxiety LOVES a person with low blood sugar when the body is hungry >:( because it can get a grip!
Oestrogen is a 'natural' hormone so how can you have an acquired resistance :-\ - is your body making any of it's own? I'm sure that someone will be along with advice.
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Hi edelweis - I'm sorry to hear you feel so rubbish. I have many of those symptoms but the tongue one I mentioned to the specialist i saw and she said it could be dehydration and/or low iron. I'm just about to start HRT so my journey is just beginning. I hope you get some answers and feel better soon xx
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Have you considered using a low dose AD.
That just might help a little bit and some ADs can help with flushes.
Mrs Brown
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Mrs Brown, Edelweiss says she's tried several AD's too.
CLKD, it's possible to not be able to tolerate HRT if something else is 'off' in your endocrine system. The thyroid is the major culprit but rarely it can be the adrenals or a pituitary problem.
The very first place to look though is plain old anxiety. You're perfectly right on that one!
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edelweiss, I too didn't want to read and run. You didn't mention seeing an endo which was my first thought like Tempest. Where are you in peri or meno?
Please don't apologise for feeling lousy and sharing here. That's what we are all here for and happy to help each other whenever we can. If it gives you some relief off load all you can! :foryou:
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Thank you all lovely ladies so much for your replies and for your suggestions of help.
Good luck Jorainbow - when it works it's brilliant!
Yes I've seen a top endocrinologist. My thyroid levels are fine, tho I've Hashimoto's (treated 15 years).
And I'm eating properly because i make myself eat. It all just tastes like cardboard.
I believe every symptom I have is because of lack of estrogen effect.
I'll post another explanation i received. I think it's interesting and plausible.
Thank you again xxx
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Sorry you're having such a hard time too. Do you know how many months/years you are post meno?
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Did the endo. check adrenal function, Edelweiss? I'd be interested to read the other explanation you have too. xxxx
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Hi dangermouse, I'm not sure about how many years post meno. I was just starting to have longer cycles when I started HRT 4.5 years ago. And I haven't had a real period since. All suppressed as far as I could tell.
Thanks Tempest re adrenals. Was it your endo suggested this test to you?
My endo is at v expensive Harley St hospital, top job. But was very dismissive when I suggested my problems were lack of estrogen effect. He said not - anxiety & depression. This was when I was trying to figure out what was happening, as I was using HRT, but had all these weird symptoms. it wasn't until got VA and body fat redistribution that I clicked it was meno-related. As far as I am aware anxiety & depression doesn't cause your ladybits to shrink and go numb!!!
I take no pleasure at all in being right, but turns out I was!
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p.s. Tempest, I don't think I can PM you yet cos i haven't made enough posts. Can you pm me, I wonder? Be lovely to chat. xxx
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See another endo. then :-\. If anyone is dismissive :-X
Tnx Tempest - hormones are such a mystery sometimes >sigh<
edelweiss - maybe another thread but what's in your diet day-by-day? As a recovering anorexic (from age 3) there are days/weeks when I haven't been able to eat at all :'( and food/drink can 'stick' and taste of nothing at all .........
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Most certainly, Edelweiss. :)
As soon as I have access to my I -pad, I'll drop you a note. PM's are nigh impossible on my phone! xxxx
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My diet is (and has always been) mainly porridge, nuts, seeds, salads, veg, fruit, lean white meat or fish. No alcohol. No choc. No sugar. I've always been healthy. Doesn't matter what I eat now it all tastes the same - metallic and/or tasteless. GRIM. I used to love food and cooking.
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Tempest - thanks that sounds great. And I understand re phone. xxx
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:) We share the same diet, too. Porridge is a must here in Scotland! ;)
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Porridge is the best ever. Can't really taste anything at moment but I did used to love it xxx
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My sense of taste has altered in recent years. However, a metallic taste can be associated with certain medications, particularly chemo therapy. Maybe speak to your Dentist for advice?
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Edelweiss I too am sending you a great big hug. I recently joined forum and have found it so comforting - to be completely honest it has been the best medicine for my chronic health anxiety. My diet is fairly healthy (just after 4 bags of ready salted crisps covered in extra salt and vinegar :-\ ) mostly organic and small amounts of red meat. I lost part of my taste and smell last summer - bad upper respiratory virus and I now realise a severe menopause episode...... ( I cancelled holiday flights and threatened to runaway >:( ) I have been referred to specialist now but I am not hopeful.... re dry mouth I experienced it for about 2 months couple years back when I had started peri ( although I was unaware at the time ) it was just another health issue and it seemed as one dissipated another raised its head! I found a liquid in chemist that gave me some relief - can't remember name of it??
What I wanted to say was I recently tested positive for underactive thyroid. My recent GP is private and I am guessing that's what was going on alongside peri as these ghastly symptoms arose over last few years. Wondering if hashimotos is connected to you're symptoms?? If you haven't read it look up wellness-mama website for info on hashimotos - I subscribe to thyroid coach Jen Wittman - you can get most of her programme for free as downloads once you sign up.
I haven't read your previous posts so please forgive me if you have already tried - would it be useful to contact Dr Currie by email?? Also if I was paying Harley St prices I certainly wouldn't be giving my money to someone who was dismissive :( of me. I can only offer you support and encouragement. This is an uphill battle and never in my wildest dreams could I have imagined how hard it could get! Lots of hugs sent to you
DaisyB xx
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Thanks DaisyB, yes I have Hashi's but it's treated and under control. And I've emailed Dr. Currie. She basically said estrogen sometimes stops working and there's nothing you can do about it. xxx
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How dreadful for you - yes apologies I'm just reading the other thread. Are you favourable to alternative therapies? I use yoga, reflexology, infra red saunas, lots of herbal supplements ??? and just started with a brilliant chiropractor- not every ones cup of tea but for me it feels like I'm not giving up :-\ I've also just discovered Doterra essential oils. Been using oils all my life - once upon a time in NI it was like importing drugs ;D they were so difficult to get! These new oils pretty expensive but terrific quality. Life wouldn't be the same without these little crutches - I sincerely wish you well - Take care DaisyB Xx
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DaisyB yes, like you, alternative therapies feels like I'm not giving up; so for that reason they are helpful. And they might actually help too. xxx
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I can empathise with you as I was in your position a few months ago. Life had no meaning and I had no feelings for or about anyone or anything. I could not see the point in living. I wouldn't take the prescription meds as they all had their own side effects, and my anxiety and panic attacks rendered me unable to swallow tablets. I had every meno symptom possible.
Now, I am able to function again, and although I still sleep in our spare room as I do get up at least once in the night, and I still have BMS to an extent, I feel more like "me". The insomnia and anxiety were probably the worst symptoms. Hrt had stopped working for me, and several different types were prescribed. My GP put me back on an hrt I had been on for years, with no problems. This then had to be increased, and my GP finally did hormone tests and acknowledged that I had been right to insist that it was hormone deficiency that had caused all the problems. I now take vit d, vit b12 complex and magnesium, in cell salts and in a spray before bed. Magnesium has been an absolute God send for me. I really hope you feel better soon, as the place you are in is not a nice place, but when you find the right regime for you, everything will improve. Stay strong, as this is all a long process, but try to live each day, one at a time, and don't have too high expectations. You WILL feel better!
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Thanks Susan, when you say your GP finally did hormone tests, do you mean they showed your estrogen levels had dropped over recent months? My problem is that I have these awful symptoms DESPITE normal/high hormone levels in my blood xxx
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Susan can I ask which magnesium you use as there are so many out there?
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Hi Jorainbow, you haven't started on Femiston yet is that right? How long do you have to wait to get the prescription? It's very likely you'll be feeling so much better very soon - here's hoping xxx
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I'm hoping soon!!! Assume once letter gets to my GP they'll call and let me know. I really hope it helps as I seem to have lost me somewhere!!!!
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I've been thinking Edelweiss and your best bet probably is to treat this as tachyphylaxis (but then you figured this out anyway)!
Whilst allowing your levels to drop, any support measures to insulate your body against stress are vital. Any and all alternative safe supports would be good. I noted on the BBC documentary with Kirsty Wark that my own Consultant Professor Lumsden said she would never tell any woman that something might not work - to see her explanation why it's worth checking out the documentary if you haven't seen it already. I always worry that women here are sometimes chided for using alternative remedies but if an internationally renowned expert such as Professor Lumsden doesnt condemn these methods then that's good enough for me. The documentary is a bit lightweight in general but has some useful tidbits. xxxxxx
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Wow that's brilliant Jorainbow. What a shame you had to wait but hope you'll soon be feeling so great you won't believe it :)
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Hi Tempest, well... I have, sort of, but the consultant's advice didn't work for me - the consultant had said:
1. When HRT stops working it's tachy
2. In tachy, estrogen will work again when E levels allowed to fall
At this point I took a break for a few days and my E levels dropped.
3. Then at hugely expensive appointment, consultant's colleague said INCREASE my dose Which I did, but that hasn't helped.
So I asked for more guidance and evidence to support 2. I didn't get any evidence, and they dodged the question, so I don't think I believe it.
Remember I've seen on these boards that this consultant is treating other MM women whose HRT has stopped working, but the women are still trialling other regimes. If he was convinced by what he told me, he'd have them take a break from HRT, let their E levels fall, and then resume after a given amount of time.
Basically, I don't think there's any effective treatment for tachy. Dr. Currie said sorry there's no simple solution, which is a lovely way of putting it. But in essence it means, there's nothing we can do to fix it.
So... what it boils down to is Dr. Currie charges £25 to give honest truth, whereas others will take £300+ and give hope, but ultimately conflicting advice and no effective treatment. I know who I trust, but of course I want to believe the ones that say they can help. Pathetic really.
I saw the Kirsty W doc twice and yes fully appreciate Prof Lumsden's placebo argument. She's right of course. The mind is very powerful. The lovely lady who believed in the magnet was a case in point! And good for her - whatever works!
I thought the documentary was good, and very welcome, but they only featured HRT success stories. Which is great for the majority, but hard to watch when you're in our position. xxx
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Hello edelweiss.
So sorry that you are having a rough time. I assume you have used Tibolone as one of your past HRT preparations? I ask because it works differently to other hormone replacement methods so may be worth a try or reconsideration.
I totally understand your frustration with it all especially as some of us are left to be our own health advocates and providers. On a different forum I came across the phrase ‘citizen scientists‘ to describe people who were searching for answers to their health problems and sharing their experiences with others in a similar situation.
Hopefully we'll soon find the solutions we looking for, all this effort has to pay off sometime!
Wishing you well and sending hugs.
K.
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Hi Kathleen, thank you so much for your lovely message. No I haven't tried tibolone and I did wonder about it.
I followed Warwick's story, and Tempest's and Annie's. I think only Annie had a positive experience? Tempest had an horrific experience and Warwick thought it was good but things then didn't work out as well.
But since Annie also had estrogen stop working after 13 years, and has had some benefit, then it's worth a try for me. Thank you again.
Interesting about 'citizen scientists'. Yes that's exactly how it feels. Tho I've read and read, and got nowhere really. Perhaps I'd be better just practicing acceptance - I'm just not very good at that. xxx
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edelweiss - why no sugar? Sometimes if food stuffs are avoided the body takes umbrage ::). I don't understand sugars in how they are glucose, sucrose etc. [sure someone will be along who does ::)] but for me, sugar has been a life saver when I have been unable to eat ...... chocolate buttons kept me alive when I was very young: easy to eat, tasty and full of minerals ........ also, if the body is hungry it is less likely to sleep.
When we were poorly Dad would put a tiny bit of honey on a spoon and ......... that worked too.
If you want to know if something scientific is true or whether the public are being fobbed off is to read Ben Goldachre's investigations.. [I don't think that he spells his name such but predictive text >:(]. He has also written two books but I don't know whether he's covered HRT ;-). Maybe he should ........
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Hello again, why no sugar? I just don't have a sweet tooth CLKD! xxx
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>wave< - because the body and brain require a good mix of foodstuffs, minerals, sugars, liquids in order to function throughout. If it's hungry it won't sleep ......... it's nowt about having a 'sweet tooth' though I have those too ::) ......... particularly pre-menstrually, many women crave 'sugar'. I was also very thirsty prior to a bleed which would have me into the kitchen at all hours needing a drink .......
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i still cant believe your state is the same as mine. Im never thirsty or hungry either- it feels like my own body wants me to die. Its truly awful. I have just contacted Diane from the Menopause Matters Support site. She had a horrendous time which she published, and is now a life coach. Ive got a telephone consult this afternoon.
Hope you are managing to stay strong...Im not. xx
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Hi Twoodie - yes, that's EXACTLY it.
I'm not managing to stay strong at all. I'm a wreck and in a daze.
I didn't know about Diane. I hope it goes well and it gives you some hope.
Let me know, please? xxx
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just had consult with Diane Danzebrink. She was just very reassuring about the whole mood thing being hormonal. She didnt have much to say about appetite-other than its association with anxiety. It was good to talk to her and you may find it helpful. She did say that if I was having a bad day to just give her a call......but every day is a bad day ( I do worry about the consistency of my misery).
hope you are managing xx
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Could you open a separate thread about the Menopause Matters Support site :-\
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oooh I'll try !
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Could you open a separate thread about the Menopause Matters Support site :-\
I don't think it's connected to Menopause Matters CLKD, not that I could find, anyway! She seems to be a life coach.
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I don't think it's anything to do with MM, correct me if I'm wrong twoodie. Diane Danzebrink is a life coach and her website is Menopause Support. Consultations are charged.
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Twoodle stated 'menopause matters support' :-\ - not that I'm easily confused :D