Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: GypsyRoseLee on April 27, 2016, 10:55:28 AM
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Haven't been around much as wanted to give Annie Evans regime (2 sachets of sandrena gel + 100mg of Utro for 7 days) chance to work, without me doing my usual stressing on here.
Well, I followed her regime for 2 months, though never got chance to use Utro as my own natural period started both months, before I had chance to use Utro. Dr Annie was unconcerned about this.
Well, out of the 2 months on her regime I only had a total of FOUR good/normal days + a couple of good/normal evenings. Oddly those 4 good days were just before my period started, but then good mood crashed soon as I started to bleed.
All the rest of the time I was more depressed and more anxious than I have ever been. Far worse, even, than when I had severe PND. My insomnia was worse. I was so distraught my GP put me in touch with our Crisis Team and I started ADs 5 weeks ago, but no sign of them working yet.
So 2 weeks ago I went to see Prof Studd, and the less said about his customer service the better. Just dreadful. But he started me on 3 pumps of oestrogel + testim, and then to start 100mg of Utro for 7 days, but not until June 1st. He wasn't remotely bothered I'd not taken progesterone for nearly 3 months. His blood test said my oestrogen level was 744 and that was day 15 of my cycle. When I last had my bloods done at Xmas on day 21 my oestrogen was 305.
But I am getting worse. Mood incredibly low and anxiety worse. Very dark thoughts. This can't be right that after nearly 3 months on the best HRT available I am feeling near suicidal?
I have never had any hot flushes. Never suffered with vaginal dryness. Periods have always stayed regular, though much lighter. Even on 3 pumps of oestrogel for the last 2 weeks, my period has started today.
All those months last year, all the HRT I tried never helped my depression or anxiety, but at least I still got quite a few good days each month.
That no longer happens.
Could it be that the higher oestrogen I have been on from Evans and Studd is actually making my anxiety and depression worse? Exacerbating it to the point that my ADs aren't touching it, despite an increase in dose.
Can this happen, if you take high dose oestrogen for nearly 3 months, when actually your body doesn't need it? It just seems very coincidental?
Admittedly I reacted badly to the combi tabs on Femoston in Jan and Feb, so when I saw Dr Annie at the start of March I was still reeling from that experience, and already feeling very low and anxious.
But I have never picked up since then. And I am in fact much worse. I don't think I could feel worse.
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Hello
Been wondering have you been doing - been checking for your posts. Haven't got time to reply properly but wanted to say "Hi" and will reply later.
All the best
M
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Hi GRL I'm sorry to hear things are still so difficult for you. Did Dr Annie have a view on this before you moved to Studd? I know Studd will advise a good 3 months on his regime to assess properly how you're getting on.....I know it's taken me a good 4/5 months to really settle on his prescription and I've had lots of issues along the way and had to tweak here and there. Even now I can feel I have low level anxiety and depression rumbling in the background whereas I felt fab a week ago but I just try to go with it but what you're experiencing is far from low level :(
I certainly found 3 pumps too high for me and I got anxiety, depression, wired, insomnia etc from it and I'm fine on 2 sometimes I think I could do with a bit more but I've tried 3 twice and both times it feels too much. You could try 2 pumps but I would absolutely recommend gritting your teeth and sticking with it for a good 3 months at least.
I had lots of times where I thought this is pointless/not working etc but I also was scared of how I felt before...I just kept going but only turned a corner very recently.
It's v tough I wish I could offer more guidance X
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Sorry - have more time now.
Did Prof Studd suggest what you were suffering from? Did he say PMDD? or hormonal depression?
I thought that when your periods starts without using the Utrogestan, it means you have too much oestrogen. I could be wrong though. You could always utilise the help of the Crisis Team whilst getting through this...
You know when you did your pill diaries, could you not review those to see which preparation was best for you. ie was it always the progesterone phase or could it have been a build up of too much oestrogen?
Sorry not much help but didn't want to not offer some support.
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Hi GRL,
I haven't got time for a long reply at the moment. Just wanted to say poor you, how dreadful feeling so low .
It is Nye on impossible thinking rationally when you are in such a way. just see my posts when I TOOK THE PILL ! I couldn't function at all.
I am not a doctor , but with all the changes in meds this year it must be very difficult to see what is and isn't working.
Make sure you tell someone how you are feeling whether it be the Samaritans, here or a friend etc. DO NOT feel alone because you aren't. Things never stay the same, there is always light at the end of the tunnel, except some peoples tunnels are longer than others and fraught with various obstacles. And boy are some peoples obstacles on the unfortunately large side!
You are marvellously strong and intelligent and there will be a way through and you may not know it now but you will be ok.
Take care.
PM
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Maybe you are clinically depressed? Add to that hormonal fluctuations ………..
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it does all point to high oestrogen, particularly as you felt better just before your period when natural progesterone would have been higher. Also the fact you still have regular periods suggests you are more in the oestrogen surging up and down phase where it affect your adrenals.
My GP told me HRT couldn't help me in this phase as the surges are too strong but I suspect there are many here where they have found it helped but may be dependent on their level of surges. Perhaps it would be best to take a break from the HRT to see if this relieves you at all. I'm not sure if oestrogen builds up in the system and affects GABA, I'm certainly not experiencing any build up of either hormone taking the pill back to back, but not sure about natural oestrogen as I have heard that synthetics are more stable and specific, so may not bounce about affecting other hormones (e.g. serotonin), as our natural ones, and possibly the bio-identicals, do.
If you're over-stimulated with the oestrogen then it could be draining your serotonin more quickly, hence the ADs will be barely touching the sides. By stopping the HRT but carrying on with the ADs at least you can then see more clearly if they are of any help.
Well done for giving the last lot a good old try, at least you're another 2 months closer to everything calming down.
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I agree with the others it sounds like too much estrogen , although 744 at mid cycle isnt too too much. I have had higher reading than that on day 21! Is this pmol/l, I presume?
Instead of fully stopping, as you are clearly perimeno, I would decrease to even 1 pump for a few days - if you feel better anxiety-wise, then the problem is excess E. Excess E makes me feel jittery and overwhelmed, but not depressed. You may feel depressed because you have tried a lot of solutions without a clear result. I would be desparate and very depressed!
I also wanted to agree with the others that you are clearly in times of extreme fluctuations where your natural estrogen might be higher than normal. This is so common in peri (before everything levels out). The fact is you are still menstruating regularly. So the question is to balance things out rather that what is missing and what us in excess. What will happen if you try Utro this month? In addition to stimulating the womb to shred, progesterone ( and Utro) have rather calming effects on the body and help better sleep. It will also balance out the excess estrogen if any. Just my humble thoughts although I am not an expert at all.
Hang on there, there will be a solution soon, I am sure!
Milamam
O
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GRL, I am so sorry to hear that you are feeling like this. I think you should get straight on to Professor Studd's office and tell his secretary exactly how you feel and how severely depressed you are. Lay it on thick to force a response.
I agree with Niamh and think you ought to consider dropping to 2 pumps of gel everyday but split the dose i.e. 1 pump every 12 hours. This is what I have been doing for a while and it is working very well.
Try the Studd regime for a few months but if it still doesn't work, then I think your best option would be a full hysterectomy including ovaries. It would appear that your hormones are erratic (hence the PND?) and giving you spikes and the only way to rid yourself of this is to get shot of your ovaries and then you can pump in the hormones you actually need without having to worry about your own hormones coming along and spoiling the party. Obviously with a full hysterectomy you will no longer need progesterone which is great. Why not run this past Prof Studd and get his opinion.
I am sorry this is so drastic but I just can't think of any other options. I really do hope the Studd (2 pump) regime works and it doesn't come to this.
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These things got me through where you are;
1 Eat regularly, every 3 hours - very important as will cause anxious feelings when hungry
2 Drink 2 litres of water every day - important to rehydrate the brain
3 Take a multi vit with hugh strenghth Vit B and magnesium to repair the nervous system
4 Do something nice every day - read with the kids, eat chocolate then look forward to that moment each day
I agree with Mary G - get back on the phone or get hubby to do it and get some urgent help.
Must go back to work now - but i'm really worried about you :'(
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Thank you so much for all your replies, very interesting. I am digesting them slowly.
In my heart of hearts I feel I am overloaded with oestrogen. Or at least haven't opposed it with enough progesterone.
Because something else I have just thought of. After reacting badly (after only taking 4 of them) to the combi tabs in Femoston 2/10 back in mid February, I stopped taking them. Instead I just applied a 50mg patch for the next 3 weeks until I saw Dr Annie (and my own period started 3 days after seeing her).
So, basically since the 2nd week in February (when I only took 4 combi tabs) I haven't taken any synthetic progesterone or any Utrogestan. So, thinking about it, actually since mid JANUARY, I have only had 4 combi tabs containing some progesterone!
And it is since those 4 combi tabs in mid February that suddenly my depression and anxiety massively increased.
I just don't feel that can be a coincidence?
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I can't remember: sorry : whether you have tried anti-depressant medication or something to counteract anxiety? :-\
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Hi CLKD
Yes, I have been on Trazadone for over 5 weeks, dose was upped to 200mg a few days ago. I also started Quetiapine last week, which is meant to be excellent for anxiety.
But they don't seem to be having any effect, except for better sleep. And I wonder if this is because I keep putting too much oestrogen in my system every day, causing high anxiety + depression, and so cancelling out the help from the ADs?
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So sorry that you seem to be running from one bad place to the next at the minute. I know noting about the hormonal side but do wonder if you might not be better just coming off the HRT for a few months at least to see what symptoms are your own and what are side effects of the oestrogen. I notice that you say you are on antidepressants but that after 5 weeks you don't feel that they are helping much - my suggestion would be to ask for a referral to a psychiatrist who can discuss treatments not available to your GP. It may be that you need a more tailored drug regime than what your doctor can offer. It is easy to blame anxiety and depression on hormones and of course, it may be that, but let's not forget than men get similar symptoms and can't blame hormonal fluctuations in quite the same way. I don't know how bleak you feel or how bad it it is, or whether it is cyclical but a psychiatric evaluation would look at this and might help you identify triggers and possible solutions. I believe that anti-psychotic medication can be used off licence under psychiatrist supervision in cases of intractable depression and anxiety and this might be an option xx
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I notice that you have just started Quetapine so it seems that your doctor is thinking along similar lines to me!
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Hi coldethly
I didn't realise, but the Crisis Team doctor is apparently a psychiatrist and it was him who prescribed the Trazadone + Quetiapine regime.
But I wonder if it's struggling to work because I am keeping my oestrogen levels too high?
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I don't know anything about oestrogen.. I always found it was the progesterone in the birth control pill that sent me into a decline. Oestrogen just made me fat. Like I say I'd be inclined to stop the hormone side for the time being and see exactly what is you and what is it. X
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Hello GRL - I have also been wondering how you have been getting on. Seems you are questioning the addition of hormones completely. Personally I would stop all the HRT and focus on your mental health in other ways. Hormones are powerful, whether natural or added and it does sound like you may have some symptoms of excess or at least out of balance estrogen.
"I have never had any hot flushes. Never suffered with vaginal dryness. Periods have always stayed regular, though much lighter. Even on 3 pumps of oestrogel for the last 2 weeks, my period has started today." Although these symptoms are signs to say low hormones are definately present, being without them doesn't mean you are not in perimenopause with fluctuating or low hormones but for me, it definately means you have enough of hormone activity going on to protect you bone and heart wise for the time being and afford you time to take stock and see where you are 'naturally' at. This might seem scary. I do think it might be the best course of action.
Please write again or call someone if you feel very very bad. What did your GP suggest? Do you have a good relationship? Maybe talk to them or just have a deeper dig inside yourself and ask what you really need, right now, to help you out of crisis xx
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Hi GRL, I'm glad to hear from you again, though I do wish you had better news. I only want to cheer you on and encourage you to keep following your gut instincts. I'm still up and down, and I often question whether it's the estrogen doing it to me, as my bad spells are always in the estrogen only days. But then I reason that I must have been low on estrogen, because none of this started until my periods disappeared and the added estrogen has certainly helped some symptoms. It's all so confusing. I feel good right now and can barely imagine how you must be feeling, but a week ago I was dreadfully low. I cringe when I women tell me they had a horrible menopause, but they went on the pill or hrt and felt better immediately. I so wish it was that quick and simple for us. You are going to find answers. It's unfortunately taking us a little longer, but we'll get there.
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Hi Lisab
We are suffering aren't we. I think we're both struggling with getting out the house too? I saw your recent post and really empathised with you.
Though I'm a little different to you in that my periods never stopped. They got a bit lighter, and started only lasting 3 days rather than 5-6, but they were still regular. So I don't think my oestrogen levels could ever have been that low?
I certainly have never suffered with hot flushes or any vaginal dryness which are classic signs of low oestrogen.
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I just wanted to add more of my own experience here with the caveat that we are all different. I was told I was close to menopause, I presumed that meant low estrogen - now I know that it means the balance is off and maybe it is lower, but not too low because I am having periods (over 18 months now, since I was told I would not have many more). I also have fibroids, these are classically a sign of a hormone imbalance, probably ongoing for years. I also suffer anxiety and have felt quite low at times, I do think low hormones are related to the depression part, but I think it's a lack of ovulation and low progesterone BUT I have ridden it out and it's OK. When I get symptoms, I do know it's the rise and fall of estrogen, mostly too high and I feel sick, bloated, panicky, digestion goes, skin does weird things, confidence plummets.........I think the fear of more change made the changes seem bigger, what I am saying is the fear of menopause and hormonal change made my anxiety much much worse. Also I know in my hearts of heart that anxiety and unresolved emotional issues really are the destabalising factor - not the hormones, they are sorting themselves out for now.
Really, I urge you to look at the most pressing symptoms and focus on that and I really hope you feel better or on the right road very very soon. Mental health is not respected enough in my opinion and I have a bit of a need to encourage and give hope to the treatment and acknowledgement of it x
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I agree with Coldethyl. Maybe your body is over-loaded with HRT - perhaps stopping it to allow your oestrogen levels to even out a bit? Think back to why you started it initially?
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I don't know. I had had hot flashes for years, but they were never bothersome enough to even think to mention it to a doctor until after my periods stopped. I had bouts of vaginal dryness, but again, it was sporadic and I never thought to see a doctor. I bought lube and shoved a handful in my drawers anytime it was particularly bothersome. It never lasted more than a few days. But my periods had been crazy heavy and extended. My last 3 or 4 regular monthly periods were very light and short. So I would guess you were on your way, but who knows? Maybe it was just a blip? I think I could have carried on through the "typical" meno symptoms. It was the drastic change in my mood and energy that sent me to the doctor for it, and even then I thought it was simply anxiety. It was my doctor who guessed something physiological was causing it, and my gynecologist had already determined 2 years before that I was in peri. The reason I'm recounting all these details is that most of them I didn't view as a problem and only recognized them as symptoms in hindsight. Maybe you have had some symptoms, but you're a strong one too and didn't pay any mind to them? Ladies on the forum mention things that still take me by surprise like "Hey! I had that!" I never thought to connect. I guess one question is what made you start hrt to begin with? Did the hrt ever help it at all? If not, maybe you're right, maybe you've been chasing the wrong thing.
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I think you speak such sense Brightlight, thank you.
I completely identify with extra fear being caused by the constant changes, and I dislike change even under normal circumstances.
I have also struggled with nausea, bloating and digestive issues for the last couple of months. And that constant underlying panic which saps your will to live.
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Why have you been giving Quetiapine isn't that an anti psychotic? Bit strong that, my daughter had this briefly and it sent her crazy. Sorry to be so dramatic.
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I agree with Brightlight - I am in fear of the peri menopause. It's almost like "how can I fight what I can't control?" Then that causes me to despair.
GRL - what is your support network like? Do you have someone with you in the day?
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Hi Lisab
Looking back the only symptoms I ever had was noticing my periods were a bit lighter and shorter. Also my PMS was worse.
It was when I suddenly started suffering with horrible random anxiety that I consulted my GP. But at that same time I had been under a lot of stress and worry for well over a year. So hormones never crossed my mind. I started Sertraline whichade my anxiety worse, so after a month I swapped to Amitriptyline and after a while everything settled down.
It was only months later when I stumbled across this place and Studd's website that I joined the dots between my PMS and PND, and now getting anxiety and depression in my early 40s.
So I started down the path of stopping ADs and trying HRT to try and help. But every month I still got roughly 10 really bad days per month where I was really low and felt hopeless, plus nasty anxiety. Some months it was as much as 20 bad days, other months maybe just 7.
But the bad days were never in a set pattern that neatly linked to my withdrawal bleed. I kept a diary but could never establish a pattern really.
So I don't know as HRT ever helped.
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Kate50 at a low dose it's often used as an adjunct to a regular AD to boost things and to help with severe anxiety.
At much higher doses it is used for bi polar etc.
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I am lucky to have a good support network Mis71Mum, thank goodness.
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Hello GypsyRoseLee.
I'm another forum member who has been wondering how you were doing. You clearly have lots of friends here who are rooting for you and I hope that brings you some comfort.
I am as perplexed by this hormonal chaos as the next person and perhaps we should consult endocrinologists as well as ( or even instead of) other medical professionals!
I think the ladies have given some good advice and I can't improve on any of it but I wanted to send hugs and best wishes. Hang in there, I've had desperate times too and they do pass.
Take care.
K.
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That's good. It's really important when you are feeling as you are.
Brightlight - did you try HRT or AD's at all? It's just you mention fibroids as a hormonal imbalance which I have. I have started Oestrogel but I know that my oestrogen was 127 about 3 weeks ago so am hoping this will help me!!!
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In that case, I think dropping the hrt would be worth a try, giving it a good 6 months for your body to reclaim control in the hormone department. You'll probably experience turmoil from dropping it too. And meantime focus on the ADs. Then after several months if you have typical meno symptoms you could try again starting very low and slow. That all looks simple I know but I imagine it'll be hard. The last thing I want to hear right now is "give it X months". I know you've already had so much time invested in this. At least if you clear your system of added estrogen you'll be able to know for sure. You've been dealing with it long enough that it would be silly to not trust your gut on this one. I know my gut instincts have been wrong before, but you have tried all the experts' recommendations and they didn't work out, so what's to lose from trying to reboot?
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I m sorry to see that things are still not good for you ,such a shame,despite seeking advise from the "specialist" . I agree with what others have suggested,time to clear the slate and start afresh. You have tried this that and the other regimes your system needs a break. You said looking back over your diary there didnt seem to be a cyclical pattern to your low moods,anxiety etc. So maybe let your body settle from hrt for a while,as you are still having regular periods despite no progesterone you are obviously still producing your own enough and the fact you dont get bleeding at odd times suggesting no excessive build up. In a couple of months see what your diary shows then and hopefully your ads will have at least got you in a better sttate on mind to think more positive. Hoping you pick up soon.
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I think you speak such sense Brightlight, thank you.
I completely identify with extra fear being caused by the constant changes, and I dislike change even under normal circumstances.
I have also struggled with nausea, bloating and digestive issues for the last couple of months. And that constant underlying panic which saps your will to live.
really am with you on your road to wellness, it's very draining and fear begets fear etc. Hope you an interrupt the cycle very very soon x
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That's good. It's really important when you are feeling as you are.
Brightlight - did you try HRT or AD's at all? It's just you mention fibroids as a hormonal imbalance which I have. I have started Oestrogel but I know that my oestrogen was 127 about 3 weeks ago so am hoping this will help me!!!
Hello - no I haven't tried HRT or AD's - I am having therapy for emotional issues and regard the hormones/fibroids, I am currently rolling with the punches ;) I didn't want to take any hormones because I don't want my fibroids to grow, which is a possibility, but unknown really, they could have been there for a long time, but quite large. I was advised they shrink after menopause, I am holding out for that to happen. Meanwhile I am doing all the things bar HRT that are advised to try and keep hormones in balance, despite the natural unbalance of perimenopause. Does that make sense?
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Hi GRL,
I like the way that GRL abbreviation has stuck ( you know what I mean). I have read through the reply's and had a think.
All medication has side effects. You are taking all different doses of different types of meds and regardless of anything , it is impossible and I mean impossible to see clearly what is or isn't working.
I do think you need to see who and how you are med free ( I advise doing this with expert help as you need to be monitored) for a bit and then with help work out a plan of action.
The reason I say monitored is because when you are so low it is difficult to see yourself rationally. I know because when I hit that terrifying, crippling, all encompassing fear and anxiety, I cannot function rationally even though I am an extremely capable woman.
Ladies , when do we ever give ourselves credit for all that we do, and who we are ? Life isn't Disney and it can be hard enough without the symptoms caused by our hormones to cope with.
You are extremely intelligent and capable GRL. I know it seems a cliché but take everything in bite size pieces. It is easier to cope with.
Do keep on posting as there are people on the site who want to support you as you have supported others.
Pepperminty xx
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Hi GRL... I know exactly how you feel! I had to contact the crisis team last November I was so bad with anxiety and depression. Long story short, I am post meno, I tried oestrogen again with little effect my problem was pure depression. I think you are overdosing on oestrogen and tipping the balance. Personally I would stop it. I tried Trazadone and worked ok, but found going back on Dosulepin 75mg got me back on track. As you will know they take a while to kick in. I agree with Mis 71, for all you will have little appetite and no motivation, make sure you eat well...its medicine. Drag yourself into the shower and out for a walk, believe me I know it's hard, but it will help with sleeping and reduce the anxiety. Also deep breathing and mindfulness...stay in the moment. You WILL get better Hun, don't worry and don't what if! Big hugs xx
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If one can recognise when you need help, reach out to seek help and then accept that help, then this is a real sign of strength. I like to think that this is what MM is all about. DG x
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Thanks Orchid. I never in my life thought I'd ever need a crisis team!
Can I ask how long you tried Trazadone for, and at what dose?
I started on 100mg for 2 weeks, then increased to 150mg for 3 weeks, and for last 4 days have been on 200mg but all it has done is improve my sleep a bit.
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Hi GypsyRoseLee (I don't do abbreviations of forum names!)
I was also wondering how you were getting on and so sorry you are still not feeling good despite having gone to two specialists.
It is all so complicated isn't it? As someone said back down the thread your mid cycle oestrogen reading is not especially high. Adding oestrogen to a cycle which might be depleted in oestrogen is supposed to keep you feeling good - and especially to prevent the pre-menstrual oestrogen dip - which may well be more extreme during peri-menopause (as well as the highs getting higher for some women). In your case it sounds almost like you were still in the stage before peri-menopause - referred to in STRAW criteria as the late reproductive stage - and this stage is where periods are still regular but some hormonal changes are occurring. I think this stage is more difficult to treat with HRT than when "official" peri-menopause starts ( as defined by NICE ie when periods become irregular).
I think Briony posted links several months ago about the worsening pms that occurs in the stage you are at - although it sounds like your oestrogen is already decreasing if periods are lighter and shorter so theoretically oestrogen should help. However if as is common at this stage, you experience high spikes in oestrogen it could go very high at times with your additional pumps of gel. Also as we've discussed before replacing oestrogen only exogenously (ie from outsdie the body) only approximates what happens in your body so is less than perfect and seems like it doesn't always work for all women.
Of course also, in the natural menstrual cycle oestrogen does not stay at the ovulatory peak for the whole cycle - and I'm not sure how this would affect different women? I really don't know anything about the phenomenon of too much oestrogen apart from tachyphyllaxis - but that only occurs when levels are attained that are physiologically much higher than ever occur naturally - Prof Studd talks about this on his website re implants.
Sorry I'm probably not being much help am I?!
I can only suggest what the others have suggested - stop everything ( including the ADs) for a few weeks if you can cope and see how your body/mood reacts (need plenty of support to hand) - or change to a patch perhaps (did you say you felt better on this?). I'm not sure if you thought of Qlaira or tried it and I can't remember why if not - maybe the progestogen would not suit you?
If nothing helps even after waiting a couple of months then maybe (temporary) chemical menopause and adding back hormones is the answer - to prevent hormonal fluctuations - I know several on here have had this, but I think the results can also be unpredictable.
The only other person I would suggest is Nick Panay - thought not sure what he would say that the other two specialists have not already done - there aren't many that have seen him but maybe you can put up a post?
I wish you well and still hoping for a miracle for you :)
Hurdity x
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Hello GypsyRoseLee, I thought about you after reading Vintagefiend's thread a couple of days ago. I am so sorry to hear that the new treatment is not helping. What Hurdity has said about the Late Reproductive stage is very interesting as I still have periods every month & they were, until the last two months, 23-24 days apart but heavier (I do have a small fibroid). Since recently starting oestrogel during the 2nd half of my cycle as advised, my cycle has lengthened to 28-30 days but I made the mistake of carrying it on into the next cycle (as I had fleeting vaginal dryness which worried me) & ended up with anxiety that went through the roof. By day 4, I stopped it & the anxiety has lessened. It is so hard to find a balance when we do not know what is going on with our own hormones day by day in the background. I truly hope that having a break from the HRT will help you :hug: xx
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Hi GRL so sorry to hear that you're going through such hell xx
I'm experiencing similar myself. I was diagnosed with severe PMDD and possible peri. First of all I was put on Evorel 50 but when it come to the progesterone part, 10mg of norethisterone for 12 days, I only managed 2 days as I felt so ill.
I saw 2 different specialists privately. One totally useless, he didn't even know what Utrogestan was when I asked after that so I went to see another lady. She told me to stop the Evorel as she wanted to take bloods on day 3 of my cycle.
Over the last year my bleeds have become shorter and a lot lighter, the year before that I missed some months but now back to regular monthly bleeds but very light. It's the emotional side that's got out of control. My anxiety goes sky high when I ovulate and I hyperventilate all the time. I feel like adrenaline is flowing through me and I'm in constant fight or flight mode. I've tried lots of anti depressants in the past, none of the SSRI/SNRI meds agree with me. I was on Trazodone for a couple of years but found it only helped with sleep. The good thing about Trazodone is it's easy to get on and off and has no side effects. I had a little insomnia when I stopped it but it soon passed. After the ovulation anxiety I get depression and panic attacks in the days leading up to my period to the extent I feel like I'm going mad and I feel suicidal. When my periods start its a deep depression for a few days where the thoughts I have honestly terrify me. All I want to do is die as I can't go on with this emotional roller coaster. The only thing I have to take is diazepam as the anti depressants aren't agreeable with me. I'm careful with diazepam as I'm terrified of addiction.
I had bloods taken by the private specialist and a smear and internal & external ultrasound. Everything come back ok and she's said I have severe PMDD and possible peri or just going into peri. I've been given microgynon to take continuously. I'm praying things improve as I honestly don't know how much more I can take.
Sorry for rambling on about me but I wanted to share my story with you as we're at a similar stage and suffering the same issues.
I would be careful with the quetiapine as its an antipsychotic drug. I think stopping everything will give you a better chance of knowing which is the root cause of your issue as I firmly believe the root cause needs to be ascertained before symptoms are treated as you just end up on loads of meds and the root cause is not dealt with.
It's strange how gynaecologists can prescribe antidepressants but psychiatrists can't prescribe hormones! I think a lot of women get diagnosed and treated for mental health issues when it's hormone imbalance causing the issues. There's no coincidence in the fact that more women suffer with mental illness than men, hormones being the difference. In the olden days I definitely would've ended up in an asylum. 4 days ago I was actively searching google for the best ways to commit suicide and screaming and crying constantly. Period now over and done with and its all gone. It's so frightening so I'm praying the microgynon works if not I'll go back and try a different pill.
Please keep us informed of your progress. Honestly my heart goes out to you as I know where you are right now emotionally and how hard it is to get through every day. Big hugs coming your way xx
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Lisa, please note the first week or so things can get worse on the pill whilst your body is getting used to the additional hormones - it was my hardest time. After about 8 days things calmed immensely though so just be prepared in case you give in too soon with it.
Also, every pill makes me feel completely different so lots of options if this one doesn't suit. I found (and everyone is different):
Microgynon (Levonorgestrel & Oestrogen high) - very relaxed but no motivation which I could see moving into depression over time, acne which never had before.
Logynon (Triphasic of Levonorgestrel) - when oestrogen was 40, too over stimulated, the rest similar to Microgynon.
Loestrin (Norethisterone high, oestrogen low) - very relaxed, sleep very long, motivation low, a little moody.
Brevinor/Ovysmen (Norethisterone low, oestrogen high) - more motivated, less sleepy, breasts more tender, too stimulated/anxious at ovulation time (pill doesn't stop mine) but I switch to Loestrin for few days if this happens.
Norimin (Norethisterone & oestrogen high) - motivated, a little too moody, hungry all the time!
All 3rd gen pills like Cilest, Mercilon, Marvelon, Qlaira made me feel like I'd had a labotomy! However, many women prefer the newer ones so this is more to demonstrate the differences we can experience.
Also, if ovulation doesn't occur then you will still feel your own oestrogen surges but the pill dampens things massively as I could barely leave my bed before I went on them (mainly severe nausea and anxiety but completely understand the suicidal feelings as you can't imagine feeling normal again and the adrenaline rushes are terrifying).
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Thanks for that Dangermouse. Did you take yours continually without a break? I've been told to take the packs back to back.
Are you still on the pill and if so which one did you settle on? Thanks for the heads up with all that information.
As long as it doesn't cause me to feel sick I won't freak out over the kicking in period. I'm emetophobic so that's my main concern.
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Yes I take mine back to back and have settled on Brevinor (and Loestrin when oestrogen naturally high). However, I'm still testing so just received Micronor (POP of Norethisterone) so will try that for a while but if the lack of oestrogen hits me I'll go straight back on Brevinor.
My GP said you can go from one to the other each day with the combined pulls without it causing any probs but obviously the longer you give them the easier it is to tell which works best.
My main symptom before the pill was extreme nausea (could only drink milk as I had over stimulated eyes, ears and stomach) from the oestrogen surges and this got worse when I added more oestrogen from the pill for the first week, but then it stopped completely. If you've not had nausea then hopefully you won't have it, esp of you didn't after first pill. Your anxiety might increase though so just grit your teeth through the first week if necessary!
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Thanks Dangermouse that's so helpful.
Good luck with your regime and I hope you find the right combo to suit.
I took my first pill last night and so far so good. I have emergency diazepam in case the anxiety gets too bad but can't imagine it's possible to feel worse than I have recently. I honestly thought I was ready to be sectioned or I would kill myself. The hormones surges calm down and I'm ok for a while and it all begins again...... What a nightmare some of us have.
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Really sorry to hear this GRL as I was wondering how you were getting on :-\
Have you thought about trying the medication to shut everything down to mimic how you would feel if you had a hysterectomy? I'm also seriously considering it
:bighug:
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Sorry GRL I didn't get back to you sooner! I was on Trazadone for about 5 weeks. I started on 25mg in medicine form as i am so sensitive to AD's and basically was terrified I'd have a bad reaction on the standard dose as I'd had with SSRI's ie Prozac. I tolerated the 25mg ok so increased in tablet form to 50mg only. It improved my symptoms of anxiety and depression a bit, but I felt dizzy on it so, decided to go back to Dosulepin which I had previously been on for 12 years. My dr had switched me from Dosulepin to Mirtrazepine as I thought the Dosulepin was making my palpitations worse. However, by the time I'd increased Mirtrazepine from 15-30 mg my anxiety was worse and I had awful digestive problems and abdo pain. I'm fine now I'm back on Dosulepin 75mg...well a lot better than I was when I went through withdrawal of everything. How are you feeling now?
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Hi GRL. I've posted this before but thought I'd say it again. Absolutely FOR ME! in early peri the anxiety/weeping/depression symptoms (as well as other symptoms too numerous to mention) were ABSOLUTELY the result of high estrogen spikes and NOT low estrogen.
My worst symptoms were at ovulation ( high estrogen) and were completely different from other PMS like symptoms ( also terrible but different) that I was getting for the week before my period started.
I tried estrogen in multiple forms and in multiple doses during this period and they made symptoms much much worse, particularly at ovulation but in general I had increased anxiety, weeping, suicidal thoughts, shakes, internal vibrations, jitters like all my neurons were firing, headaches, brain fog etc etc. I can induce these symptoms out of the blue by putting on a moderate estrogen dose even now.
During this time my periods were also very close together, very heavy etc.
I elected to stop all hormones until i was further along in the process as I was told repeatedly by a variety of doctors that my estrogen level was fine MOST OF THE TIME, although it certainly was starting to dip into the lower ranges some of the time and although overall my estrogen levels were likely lowering, the spikes made supplemental estrogen intolerable. The only thing that helped with anxiety during this period was Gabapentin ( also called neurontin) which affects the GABA system in the brain and is calming. SSRI did nothing.
I am further along in the peri process although who knows how many years I have left. Now i've started drying up everywhere, hot flashes etc. I have elected to hold off on hormones ( except vaginal)>Periods coming farther apart, skipped one, lighter. The science tells us that our estrogen doesn't really get low and stay low until within 1-2 years of true menopause. So unless you have missed periods and have gone a full 60 days without a period, on average you are unlikely to be within a year or two of menopause and your estrogen ( although lower) may still be adequate for you. The spikes may be whats causing much of your distress. Or the rapid drops from high spikes at ovulation.
You've tried a ton of hormones at a ton of doses and it's not helping...so it seems reasonable to try a few months without any supplemental hormones.
I highly recommend trying Gabapentin if you haven't. I also liked MACA which i was on for a number of months and I THINK really helped the mood.
Good luck.
PS I was in your shoes for almost 2 years....i think there's a light at the end of the tunnel as now that I'm further along there has been a dramatic improvement in the mood/anxiety/depression symptoms without any hormones at all. Worth a try.
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HI GRL
Just a quick reply as I'm about to go out the door, but didnt want to read and run.
Really sorry to hear that things arent good. You must be exhausted with the 'when will this end?' feeling we all know only too well.
The more I read of this thread, the more I think you have similar issues to me. Neither of us are menopausal yet, but we do have slumps and sudden increases in our estrogen levels, often quite randomly. My levels have dipped to 41pmol previously, yet I still have normalish periods and no hot flushes. Therefore, by adding the three pumps of gel - or the 100mcg patch in my case - we are in no way controlling our fluctuating hormone levels and are, at times, ending up with excessively high levels of estrogen. I reacted in very much the same way as you with high dose transdermal estrogen. The more I read, the more I see that to prevent ovulation with estrogen alone, you need to be nearer 200mcg patches - and that in itself brings its own issues. Any less, and we are potentially exacerbating our wayward hormones.
The only time either of us has had a longer patch of normality has been whilst on the pill. Remember how, with Marvelon, you felt great until you took a break? If nothing else, this proves that your issues are likely to be hormonal rather than purely psychological. This suggests we both benefit from suppressed ovulation and, as a result, reduced fluctuations. Have you therefore considered a slightly lower dose pill? Perhaps even talking to your local FPC who often have a better knowledge of pills and their respective side effects. Have you ever tried a fourth generation progesterone? My doctor recently explained that they are the nearest to 'natural' progesterone (though still synthetic, with a slightly elevated risk) and certainly, from my experience, the only pills I can tolerate.
I'd be lying if I said I felt 100% like my old self, but switching back to a 4-phase, limited break 4th generation pill, for me, has at least got me feeling more 'even' again ..... massively better than how I felt on hrt or a more potent pill like Marvelon. Did either Studd or Annie Evans mention this?
Hang in there, B x
PS At the risk of contradicting myself, I do also agree with those who've said you've tried a lot of different things and perhaps your body needs a break. I just also wanted to say, when your head's clearer, that there are still options to try. When I realised that myself, I know it helped reduce that awful 'rabbit in headlights' hideous feeling of dread I had - even though I left it while before I did anything about it.
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For anyone reading this who is considering the pill to control hormonal fluctuations, I'd recommend Googling Avon Pill Ladder which is very useful. Only problem with it is that the newer pills, including the 4th generation ones like Qlaira and Zoeley with bio identical estrogen are not on it. It does cover all the ones mentioned by previous posters.
I can't find the original, but this is similar:
http://www.gpnotebook.co.uk/simplepage.cfm?ID=792002630
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I take quetiapine at lowest dose possible combined with citalopram. This was prescribed by a psychiatrist and is great for anxiety. Stick with it for a bit. I believe the body and mind are all one and one affects the other, so both approaches are valid.
Love Charliegirl.
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For anyone reading this who is considering the pill to control hormonal fluctuations, I'd recommend Googling Avon Pill Ladder which is very useful. Only problem with it is that the newer pills, including the 4th generation ones like Qlaira and Zoeley with bio identical estrogen are not on it. It does cover all the ones mentioned by previous posters.
I can't find the original, but this is similar:
http://www.gpnotebook.co.uk/simplepage.cfm?ID=792002630
That's really interesting, thanks for posting.
I've just started Microgynon and was told to take continuously. I'm now wondering if I've to take it every day is it safe not to have a break? I thought you needed to have a break to shed endometrial lining or is that just for HRT?
Sorry if I'm asking daft questions but I'm new to all this
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Not a daft question. It confused me too, Lisa.
My GP told me that when the pill was invented, scientists included a pill free break and accompanying bleed simply because they thought women would 'want' a bleed. I assume they were male scientists!
I assume that there is more progesterone in the pill, and it is taken daily, hence the womb won't build up in the way it does with hrt?
That said, most people I know still have a break every three months rather than no break at all. There is a pill - think it's Seansonique or Seasonalle - which only has blank pills after 80 odd days. I take a pill which only has two non pill days, which is great as there's no big withdrawl, plus it gradually decreases so there is no sudden fluctuation. This suits me perfectly as I get hormonal migraines, but it doesn't suit everyone. I have a number of friends who take Yas which only has three non pill days. I think Eloine is like this?
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Thanks Briony. I'll ask when I go for my follow up appointment in 6 weeks time.
Is Microgynon one of the older pills then with the old fashioned progesterone in?
At a previous appointment the specialist did mention qlaira but when I got to my last appointment I was so relieved that my ultrasounds, smear and bloods were all okay I never thought to question the Microgynon prescription she gave me.
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Lisa, the one you're on is one of the older , cheaper and safer combined pills which suits many women. It is however more androgynous (not the right word, I know, but mind gone blank). I would give it a few months to let it settle before thinking of changing. Qlaira - which would be on the right hand part of the ladder, opposite to your pill - is massively more expensive, has less potent estrogen and only two blank pill days, which I like, but others have been less happy with it. It definitely took me three months to feel the benefit as I had initial side effects. I think you can't judge a pill properly in less time than this, but it is a very long time to wait when you're feeling rubbish, I know!
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It's unopposed oestrogen that puts the womb at risk. By taking progesterone, this will keep the endometrial lining thin so oestrogen cannot stimulate cancer to grow there.
If you have it continuously (like with the Mirena coil, the mini pill or back to back combined pill), the lining will stay thin.
With cyclical HRT, you take less progesterone so there is a bigger margin of error in opposing the oestrogen. I dont think the bleed is a helpful function, it just occurs when you take progesterone breaks and is more an indication of how well you are opposing the oestrogen. I think a smaller bleed shows you are opposing it well and a heavy bleed means the opposite, as a bigger lining has shed. (I think re. this part as I've not tried HRT, pls correct me if I'm wrong!).
If you have too much oestrogen in the pill (as our own levels on top are all different) then you will get breakthrough bleeding so should switch to a more progesterone dominant pill. This would be the only thing to keep a check on. No need for any breaks.
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That's interesting Dangermouse. Is breakthrough bleeding the same as what my GP called spotting? (Very light bleed for a few days part way through the pill pack)? The reason I ask is that if they are the same, then my GP said I needed more estrogen, not less. I was switched to Marvelon which is not progesterone dominant. It helped the spotting but made me feel awful, with permanent nausea and horrible anxiety/anger, so eventually I switched back. This time round the bleeding seems fine (fingers crossed). The weird thing is, nausea was initially one of my symptoms when my estrogen was low (before I took the pill or hrt) - I thought it was high estrogen that caused nausea? I seem to get it at either end of the scale. Or do you think it's surges that cause it?
This is taken from the pill ladder:
in general with breakthrough bleeding, it is worth trying a higher dose of oestrogen (of course pathology such as a cervical problem or a sexually transmitted in ection (STI) needs to be excluded first). Certain progesterones are associated with better cycle control than others (LNG better than NET, GSD better than DSG) but if a woman finds a particular progesterone suits her, for example DSG, but she experiences breakthrough bleeding with a low dose 20 mcg EE (Mercilon), then you can try moving up the same ladder staying with the same progesterone but increasing to a 30 mcg EE pill (Marvelon)
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Thank you both, put my mind at rest. Only on day 4 but so far so good side effect wise, touch wood!
It was a consultant I was seeing privately and it was a private prescription she gave me so I had to pay for the pills,,so I don't think her decision was based on cost like some GPs do. I'll ask when I go back why she thought this was the most appropriate choice for me.
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Yes I would've thought too much progesterone would cause break through bleeding
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Briony, someone posted awhile ago about breakthrough bleeding causes (Hurdity?). If I recall correctly, it could go either way. Too little estrogen would perhaps not supress ovulation and you could have random spotting. On the other hand, too much estrogen could cause the lining to grow to a point that it kind of atrophies (maybe not the right term in this case) and breaks up a little on its own, leading to spotting. I know in my personal experience, my body was too particular for any pill. I tried several different ones in my twenties for 3-6 months at a time and had spotting/breakthrough with all of them. There was one I did fairly well on, but if I was even an hour late taking it, I would bleed. The doctor didn't trust that it was giving sufficient contraceptive protection so I had to abandon hormonal contraceptives altogether.
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Ah - that's interesting Lisa and makes a lot of sense. Interesting what your doctor said about still ovulating on the pill, as that was my fear on Qlaira too (even if it's not every month). I think Dangermouse mentioned that she still ovulated on a pill as well? Does this mean, if we are still peri menopausal, we should use be using additional contraception? ???
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I *think* if you're having unplanned bleeding at any stage/age on the pill then it shouldn't be considered effective contraceptive. If your periods are coming when they are supposed to, during the "off" week, then I would assume it's all good.
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There does seem to be mixed views on the lining shedding causes but I suspect, like a lot of our symptoms, they can happen at either end of the spectrum. I just found another article that said the oestrogen stops the lining getting too thin as it can then breakaway and bleed. So yes I think it's all about balance so it's not too big to make it crash through or too small that it can't sustain itself?
I think the main point though is that as long as you aren't having any bleeding then you can take the pill without breaks.
Marvelon made me feel awful too but another oestrogen dominant pill made me feel good, so it's a lot to do with the type of prog. High oestrogen can cause over stimulation nausea and anxiety and low oestrogen makes the adrenal glands throw out more adrenaline (to keep heart beating adequately) which can cause the same nausea and anxiety. It's all about getting the balance right.
I wish there was a low oestrogen and low Norethisterone pill, as 20mcg of oestrogen really seems to suit me but its paired with high prog. The low prog is then paired with 35mcg of oestrogen and Norimin has both of them high! I chickened out of the mini pill only as started getting vague nausea but am thinking of pairing it with Estrogel as I know this is done with the Mirena. I don't really want to fiddle with cyclical progesterone for now. I'm just fine tuning really to try to defeat quite strong lethargy I'm still left with.
The pill mainly works by the artificial progesterone thickening the mucus so that sperm cannot get through. The addition of oestrogen in the combined pill stops ovulation also for most. So even if you still ovulate, you will be getting the same contraceptive protection as if you were on a progesterone only form.
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Thanks Dangermouse - that's really helpful and makes sense. Have never made the adrenal gland/nausea connection before. Good reminder that estrogen and progesterone arent the only parts of the equation.
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You really must have your thyroid tested. The symptoms you are mentioning could very easily be low thyroid.
Ask for
TSH
FT4
FT3
Thyroid antibodies.
Many years ago I was told that all my symptoms were peri menopause when in fact they were hypothyroidism.