Menopause Matters Forum

Menopause Discussion => All things menopause => Topic started by: flufferama on August 04, 2016, 09:05:21 AM

Title: Please please help me! Updated
Post by: flufferama on August 04, 2016, 09:05:21 AM
Hello everyone. I'm new and have been reading for a few days. I think some of you very knowledgeable women can help me. Because I'm desperate.

This is a long post but I wanted to give as much info as possible so maybe someone can relate and offer advice.

A brief history of me. I turn 40 shortly. After my son was born four years ago I was plunged into terrible PND, mostly manifesting as severe anxiety and insomnia. My GP took the well-worn route of antidepressants which did not agree with me at all, sent my agitation off the scale and things got so bad I asked to be admitted to a psych hospital because I was having suicidal thoughts. I never felt like that before I took them.
In hospital I was given an antipsychotic to counter the effects of the SSRI.

Fast forward to two years later and I very slowly weaned off the meds. I was fine, really good.... until 10 days or so before my period. I would be clobbered with severe agitation, anxiety, depression. It was like clockwork, once my period arrived I'd be fine. For two to three weeks.

After four months of carefully tracking this, I came across Prof Studd's website and realised he was talking about me. Everything was relevant to my situation. My depression and anxiety were hormonal! There were no external factors for my PND, beautiful pregnancy and birth, very supportive DH and family.

I found a gynae who had heard about Studd's research and he agreed to give me Evorel 50mg patches to use just for the 10 days or so before my period arrived (I had a very regular 24 day cycle so this was easy to do).

It worked like a dream. For two years, I would feel my mood dropping, my insomnia kicking in, awful anxiety. I'd stick on a patch and bingo. All was well with the world.

That was until about a month ago. I've had an alarming slide in the past four weeks. Waking up at 5am with horrible palpitations, all the classic physical symptoms of anxiety, severe brain fog, mood slipping lower, not getting enjoyment from anything. This really worried me as it started out of nowhere with no external factors.

It hasn't lifted. I am using the Evorel at the moment and nada, it's not doing what it used to do.

I was so worried and alarmed at the VERY sudden change that I asked my GP for blood tests. I know I will most likely be 'within normal range' but things have deteriorated so badly and so quickly that I'm wondering if my thyroid is off.
GP also offered me beta blockers which I haven't taken. My blood pressure is fine.

My genetics are all screaming that this is hormone related. My gran didn't have a period after the age of 40, my mum 41 and my sister 39.

I'm due to have these bloods done next week and I have an appt to see my gynae mid September.

So here are my questions.

My biggest fear is that nothing will show up in the bloods. What can I do? I cannot continue to go on like this. I am thinking I may have to quit my job because I am not functioning, my brain is not working the way it should be, my mood is getting lower, I'm so drained of waking so early and being unable to fall back asleep. I get no joy from my darling son. My heart rate takes off at random times, when I'm watching telly, sitting on the train, lying in bed.

I know I am very intolerant to progesterone, the mini pill made me want to jump out a window and I didn't even last a full month on that.

What should I be asking my gynae to do?

Do I need progestogen (even though I don't tolerate it?)  :-\
Do I need testosterone?
Do I need the full whack of HRT?


I'm still having regular periods, although they've stretched to 28/29 days in the past couple of months.

I feel so despondent. When I was in the psych hospital I did a lot of CBT and mindfulness. I know if I hadn't done those things I would have been having full blown panic attacks for the past month. It's only because I am very self aware that I haven't lurched into a total panic when my heart kicks off and I'm lying awake at 5am feeling really horrible. It's SO hard to stay mindful and try to otherwise relax when my body is 'fizzing' and my heart is banging.

I exercise, I eat well, I don't drink alcohol, I've stopped my two cups of coffee a day.

Where do I go from here? I cannot continue going the way I am.  :'(

BTW I am not living in the UK and we don't have any kind of menopause clinics here. I am so scared of the sudden developments that I would be willing to fly to London and see Prof Studd, even if it costs me more money than I have.
Title: Re: Please please help me!
Post by: clare663 on August 04, 2016, 10:35:16 AM
Hi Flufferama. Wanted to say hello and let you know someone will be on the way with some knowledge for you soon, I'm sure! it sounds like your bloods may well show something up so I wouldnt worry too much about that. Hope you get it sorted x
Title: Re: Please please help me!
Post by: CLKD on August 04, 2016, 11:15:55 AM
 :bighug:

I'm sure someone will be along.  However, I believe the Prof Studd will do initial phone consults , might be worth ringing his Secretary to find out?  Also how much it would cost to visit with him and then your GP can continue prescribing?

Title: Re: Please please help me!
Post by: flufferama on August 04, 2016, 12:39:39 PM
Thank you both for replying. It's interesting that Prof Studd might do a telephone consultation. It's something I will keep in mind.
I'm not due to see my own gynae until mid Sept and to be honest I don't think I can face hanging on like this until then.

I'm actually hoping my bloods show something is wrong because I can't figure out what is going on with me and why it was so sudden.
Title: Re: Please please help me!
Post by: MIS71MUM on August 04, 2016, 02:18:59 PM
Hi
I just wanted to offer my sympathies....and I have been there myself.  All I can say is that don't pin too much on to the blood tests, you can still suffer from the peri, extreme pms, without anything being conclusive on your bloods.  From experience the blood tests can fluctuate anyway. 

Do you know what tests you are having done? Is it FSH or oestrogen or progesterone?

From what I've read on here if you are still having periods, then you should still be producing testosterone.

You will probably need a dose of p and o to override your cycle but someone more knowledge will be along soon.

Just noticed on another thread about citalopram, are you sure it's not the withdrawal from that?


Title: Re: Please please help me!
Post by: Milamam on August 04, 2016, 02:54:28 PM
Hi from me too, welcome to this lovely place - there are so many women on this forum who have felt exactly as you do. I want to agree that you shouldn't place too much expectations on the blood tests, you may have all these horrible reactions and still have hormone levels within the normal limits.
When I started HRT two years ago, my estrogen was within limits but at the lower end, my FSH  was also within the limits but toward the higher end of the scale. One gynae said all is normal, hang in there, take herbal supplements. Two months later I went to another gynae since the herbals did nothing. When he heard about my anxiety, panick attacks, dizziness, insomnia, etc - he didn't question any further. He said I am ideal candidate for HRT and the herbal supplements won't help in my case. So its a question of the right specialist at the right time! If your current gynae is understanding, and knows your history, stick with him/her.

Also, it seems that estrogen has helped you before. Great! It may indicate that you have begun peri nowand you may benefit from continuous estrogen at a mid to high dose, not just for ten days/month. Browse here , use the search engine and see also in the menu about relevant preparations. See also others posts about Prof. Studd and his regime.

Keep posting, and good luck!
Milamam
Title: Re: Please please help me!
Post by: flufferama on August 04, 2016, 02:59:54 PM
I'm sure it's not withdrawal, I came off SSRIs two and a half years ago.

I've been fine since then, barring the horrific premenstrual dips which the Evorel sorted beautifully. Until now!
This awful, awful crash started early in my cycle a month ago and hasn't lifted yet. My period is due some time next week.

GP has written to test for oestrogen, prog and thyroid. Although would my oestrogen results be off anyway given I use Evorel for 10 days a month or so?

Thanks so much for your responses. I can handle physical elements, give me heavy periods and clots and headaches, I cannot handle this terrible fog and anxiety/sadness.
Title: Re: Please please help me!
Post by: dulciana on August 04, 2016, 03:25:55 PM
Hi flufferama,

You mentioned not being able to get back to sleep after waking early - have you ever tried magnesium spray?   I'm just wondering, if your sleep patterns improved, whether this would have any positive effect at all on coping with everything else that you're experiencing.  I've found I can get back to sleep 9 times out of 10, if I use mag. spray.   Just a thought.
Dulciana
x
Title: Re: Please please help me!
Post by: flufferama on August 04, 2016, 03:36:52 PM
Thanks Dulciana, I'm taking two 500mg magnesium tablets a day, two omega oil tablets and Vitamin D. I have B Complex too.
I wonder if the spray would be more effective?
Title: Re: Please please help me!
Post by: donnacrichton on August 04, 2016, 04:10:44 PM
Hi just want you to know you are not alone. I admitted myself also to a psychiatric hospital thinking I was going mad. Turns out it is peri with massive highs and lows. Hope you get help soon xx
Title: Re: Please please help me!
Post by: CLKD on August 04, 2016, 04:26:46 PM
Another thing that I was advised when told I had PMT - which only happens leading up to a period, once the bleed stops the symptoms go; until the next month  >:( - was to eat every 3 hours, 24/7.  In the night is important.  It helps stop that awful empty stomach lurch which can = anxiety surges.

Dried fruits/nuts; ginger biscuits; start the day with slow release food i.e. porridge  :sick02:  ;D …… as well as lots of green foods and bananas.
Title: Re: Please please help me!
Post by: dangermouse on August 04, 2016, 07:08:46 PM
I coincidentally just posted this on another thread that it could be oestrogen surges that can happen during peri when your ovaries make a last ditch attempt to get you pregnant by chucking out lots of oestrogen. It can cause all the adrenal symptoms you mentioned and tachycardia and any other over stimulation symptoms.

It can be very frightening due to the sudden severity and could last a few months to a year or so. You may find you're temporarily less progesterone tolerant during this time as happened to me, as could only handle very high oestrogen combined contraceptive pills when younger but found the prog made me feel better during the surges - although the mini pill was still too much.
Title: Re: Please please help me!
Post by: flufferama on August 04, 2016, 07:25:33 PM
Thank you all for your replies and messages. I felt so horribly alone in this but knowing I am not crazy helps enormously.

I found a pack of ovulation predictor sticks and I'm thinking of using them next month to see if I'm actually ovulating .... Although I don't know if that makes a difference.

The surge in oestrogen is definitely something to think about, especially those symptoms you described, dangermouse.

Up to now I've practically kissed my oestrogen patches for saving me from the precipice every month. But I guess it's expected that my body will change so that couldn't last forever.

I need to be patient and wait to talk to my gynae but it's hard when I'm feeling so utterly awful. I'm curious to find out if there's any change in mood when my period arrives.

I'll keep an eye on the regular eating too. I tend to stick to three meals a day but will change that. It's so frustrating when you're doing everything "right" - eating really well, no alcohol, exercising, supplements, mindfulness, relaxation and still feel like you want to crawl out of your own skin.

Trying to be positive, I cried for a full hour on the drive home from work today. I have a banging headache now but maybe the meltdown will help somewhat!
Title: Re: Please please help me!
Post by: CLKD on August 04, 2016, 09:03:41 PM
Sometimes the body needs more energy to aid us through The Change so keep eating healthy grub but split it into smaller portions through the day? 
Title: Re: Please please help me!
Post by: Mary G on August 04, 2016, 10:06:24 PM
I would recommend you ring Professor Studd's office and try to arrange telephone consultation, another member did this successfully recently.  You might want to wait until after you receive your blood test results but at least you can find out if a telephone consultation is possible.

Early menopause seems to run in families and from what you have said, it would seem that your oestrogen levels have dropped and the patches are not working anymore.

Professor Studd prefers to work with Oestrogel and he will probably prescribe it for you.

Please let us know how you get on and good luck.

Title: Re: Please please help me!
Post by: Elizabethrose on August 04, 2016, 11:03:31 PM
Hi Flufferama,

I just wanted to say welcome to the forum, there are so many lovely supportive women on here all struggling with their own journeys. You are certainly not alone.

I'm late peri with cripplingly high oestrogen surges and dives and they can certainly create havoc. It is far easier to cope with all of this if you can read what your body is doing. Keep a daily diary of symptoms, i.e. bleeding patterns, headache, anxiety, breast pain, bloating etc  because you may start to see a pattern and this will also be valuable to the consultant you'll see in September.

Knowing you are 'normal' and recognising what is happening to you allows you to feel more in control. September will be here very soon and then you will no doubt be reassured by an expert.

It's very easy to say but I get by by just trying to ride the storm. I take each day as it comes, and I am hugely reassured if I can recognise what is happening. "Oh my oestrogen is just surging at the moment". Sounds pretty lame but it helps, we have to find a way to get by!

I send you all good wishes.



Title: Re: Please please help me!
Post by: Tinkerbellj on August 05, 2016, 08:10:39 AM
Just to say I am exactly the same. I took info feom proff studd web site to doc and she prescribed the same regeime. It took the 4 pumps to knock out the hormone surges. Still not perfect but getting better. Just to say get your b12 checked cuz this can also contribute to anxiety etc. Hang in there its horrible I am seeing a psychiatrist and getting cbt.  Hope u get some help soon xx
Title: Re: Please please help me!
Post by: flufferama on August 10, 2016, 09:45:18 AM
Thank you all so much for your replies, they are very much appreciated.

I have been keeping brief notes on my day to day issues, although that is difficult when the brain fog kicks in.

My period arrived two days ago, it's an unusual one for me. I usually start with a bang, bleed heavily for 3 days and then it gets lighter for a day or so and ends. This one started slowly, stopped, started again and is nowhere near as heavy as has been usual for me for the past 4-5 years.

I'm feeling OK today, that horrific anxiety upon waking isn't there today. I'm still waking at 5.30am-ish which is SO unusual for me too. For my entire life I've been someone who wakes slowly, takes a few minutes and a cuppa to get going and am always starving in the morning. So waking much earlier than usual and feeling wired with zero appetite is not what I'm used to at all. My appetite has disappeared in recent weeks.
The palpitations have disappeared in the past few days too.

I really wish I knew what was going on, well I know what's going on but do I have too much oestrogen? Do I need to start some progesterone now too?
I know there is no quick fix and it'll take some trial and error but I don't even know where to start at this point.

It's so hard to know what to do next or even what to suggest to my gynae when I see him next.


My plan for now is to get the bloods done later this week, see if anything comes back from that and keep plodding on until I see my gynae. If things again slide as badly as they did over the past month I will fight to see him sooner than mid-September. What I'll say to him and what I think we should do next is a mystery to me at the moment, however.
Title: Re: Please please help me!
Post by: Milamam on August 10, 2016, 09:52:43 AM
Hi flufferama,
I don't have an answer for yoy but the one thing is certain - if your period has showed up much lighter, then this means your estrogen is lower, not higher. High/excess estrogen usually causes heavy bleeds and clotts.

Your blood tests should show what is going on. Make sure these are taken day 3-5 of the menstrual cycle.

Good luck with your gynae appointment and keep posting!
Milamam
Title: Re: Please please help me!
Post by: flufferama on August 10, 2016, 10:01:06 AM
Thank you Milamam.

I'm confused because I stuck on an oestrogen patch on day 10 of this cycle. Up until now I have never used them until day 18 or 19 of a 24/25 day cycle because that's when the severe anxiety/depression/PMDD whatever you want to call it, would kick in. It always worked to lift that.

This time, for the first time ever, I felt so utterly awful and hopeless so early in my cycle that I chanced using the oestrogen much earlier than I ever needed to previously. But it didn't really make a difference. I think my mood has improved now simply because my period has started.

Maybe I need to go higher than Evorel 50mgs. I will definitely mention this to my gynae!


Title: Re: Please please help me!
Post by: Milamam on August 10, 2016, 11:53:42 AM
Discuss with your gynae but maybe you need continuous estrogen. In this case, you will also need progesterone for part of the month. Some women don't tolerate prog very well though. But you can't tell if you haven't tried a full cycle.
Title: Re: Please please help me!
Post by: dangermouse on August 10, 2016, 04:02:35 PM
I had the 5am awakening (also with severe adrenal anxiety and nausea) when my oestrogen surges started about a year ago (think they may have stopped now - still testing). I've never had insomnia and always needed an alarm to wake up, and then as I started into perimenopause about 8 years ago, I would wake even later, feeling very groggy and exhausted even though I'd had plenty of sleep. Then last year, the opposite happened where I was almost shaken awake at 5am every single morning!

Our adrenaline is at it's highest at around 5am and then gradually lowers and starts going up again around 2pm and peaks again at 5pm. You may have sudden low oestrogen which then throws your brain into a panic and it starts forcing the ovaries to throw out more oestrogen (the surges) and this all causes higher adrenaline - so more noticeable at 5am when its always higher.

Once I knew what was happening I was put on the combined contraceptive pill, as the high oestrogen in it stopped the volatility as my GP told me HRT wouldn't be strong enough - not sure if this is true though. After a month I no longer woke at 5am and everything calmed down. I think the only way to control these surges (when they're extreme) is with high oestrogen HRT, the pill or beta blockers etc. to deal with the symptoms - or just ride it out if your symptoms allow you to get through the day. I had no choice but to go on the pill, as I couldn't eat at all and was in an out of A&E for fluids.

These do go away and I've heard they can last from a few months to a year or so.
Title: Re: Please please help me!
Post by: CLKD on August 10, 2016, 04:21:08 PM
Group  :hug:
Title: Re: Please please help me!
Post by: Trufflecat on August 10, 2016, 07:36:59 PM
I'm glad that you are feeling a bit better now that your period has started. We are all so different and our blood levels mean so little it's hard to know what's what!

My husband found info on prof Studd and I fit his pattern of being progesterone but intolerant.  My pmt was always horrible, really horrible and getting worse. I am in peri and my periods getting irregular. My GP has been good at listening and I started off on the patches, until the progesterone in them made me bonkers and depressed. Now I am on four pumps of gel plus micronised progesterone......which I tolerate much better used vaginally.....used for 10 days per month.
Title: Re: Please please help me!
Post by: flufferama on August 14, 2016, 11:35:14 AM
Thank you all once again.

I've just read all your replies again because I couldn't concentrate when I first read them, my brain was whirring with agitation.  :'(

I'm up and down like a yoyo and swinging wildly between terrible anxiety and brief moments of 'normality'. Today (day 6 of my cycle) started well. Yesterday I had a complete meltdown and climbed into bed at 8pm after sobbing with fear and frustration most of the day.

I'm going to ask my gynae about the pill. I've been reading here about Qlaira? I think it's worth a shot. I'd let him cut my arm off it it meant I could stop this nightmare. At this point I'd rather feel nothing than feel these devastating ups and downs.
Maybe suppressing ovulation altogether and forcing the fluctuations to stop will help.

Will get blood results later this week. Not expecting anything to look "out of range" but at least I'll feel like I've done something.
Title: Re: Please please help me!
Post by: Trufflecat on August 14, 2016, 01:17:26 PM
It may be that preventing ovulation would help........I suspect that's why I feel better on 4 pumps of gel.
Title: Re: Please please help me!
Post by: flufferama on August 27, 2016, 12:27:59 PM
I thought I'd update after seeing my gynae.

He looked at my bloods (which my GP had told me were "fine") and said my oestrogen is very low. It was 63p/mol when the lowest range for a menopausal woman is over 98p/mol and I'm about 15 years too young for that level.

Told him about waking at 4-5am every single morning for weeks now, the palpitations, hair falling out, awful anxiety interspersed with very low mood.

So he's decided I must see a cardiologist to investigate the palpitations  ??? To which I wanted to scream "but isn't that a factor in crazy oestrogen?"

He ruled out the Pill immediately.
Told me to use the Evorel 50mgs oestrogen every day for now.
Told me to get bloods done again on day 21, he wants to see a comparison with the last lot.

I cried my eyes out there, I think I freaked him out.

I think he doesn't know what to do with me at the moment so is waiting for cardiologist/second bloods to decide.

So for now I'm to use continuous oestrogen.

I was so upset leaving his clinic, but trying to accept that this is the way it is for now.
Title: Re: Please please help me! Updated
Post by: CLKD on August 27, 2016, 02:03:33 PM
Did he say that he doesn't know what to do with you or is it because you didn't get what you expected from the Consult?  He's referred you to another Specialist and advised you to continue with the regime for now.

Crying is fine, it impresses on these medics that there really is a problem.  That we won't be pushed under the carpet!

Did he refer you directly to the Cardiologist and if so, I would be asking why not?  I would also ask him to tell my GP that my bloods actually, aren't 'fine'!
Title: Re: Please please help me! Updated
Post by: flufferama on August 27, 2016, 05:49:58 PM
He has referred me to the cardiologist. I think he wants to paint a whole picture before deciding what road to take. I know I can't stay on unopposed oestrogen long term.
I guess I really wanted him to "do" something that day or give me something because I walked out of there thinking I can't go on like I've been the past while.
Title: Re: Please please help me! Updated
Post by: flufferama on October 03, 2016, 11:50:08 AM
Thought I'd post an update of sorts given the kind replies I got from the lovely ladies here.

So, I had the ECG and Holter monitor (despite knowing in my heart, pardon the pun, that these palpitations were the first indication of a hot flush arriving). All looked fine on the ECG and the Holter picked up some ectopic beats which the cardiologist is not concerned about.
So that's that part.

I've had three sets of bloods done.
The first set were on Day 3 of my cycle and my oestradiol was a sad 68 p/mol (so low it wasn't even in range). Progesterone was very low too but it would be at that stage in my cycle. I'd been wearing an Evorel 50mg patch for 10 days when I had these bloods done.
The second set were taken on Day 21. Again my oestradiol was in a sad spot, right at baseline in range. My progesterone on that day was 6, it should be more than 30. Had been using the oestrogen patch for 19 days when this blood was drawn.
I'll have a copy of the final set of bloods tomorrow and am curious to see what shows up.

I'm seeing my gynae on Thursday, armed with the heart report and blood test results.

I'm barely hanging on now, I asked my GP to sign me off work for two weeks because I'm not holding it together too well. So, so weary of jolting awake at 4am, feeling exhausted but wired, my mood is on the floor. Having frequent meltdowns and crying jags. My poor husband is so worried about me. My little boy needs his mummy back.

I resorted to taking antihistamines at night in a desperate attempt to sleep better, they did help for a few nights but not so much now.

I have no idea what my gynae will suggest, I have no idea what to suggest myself, even armed with so much valuable information I have gleaned from this site. I wonder if I am not absorbing the oestrogen from the patches given the very low levels returned from bloods even while using it. I wonder if I need a mega dose of oestrogen. I wonder if I need a Mirena or sequential progesterone. My head is all over the place.

I just know I will not leave his clinic empty handed, I am not walking out of there with nothing to try. It has to get better, doesn't it? This can't be 'it' for the future, can it? I've only just turned 40.  :'(
Title: Re: Please please help me! Updated
Post by: CLKD on October 03, 2016, 01:48:03 PM
Have a look-see at the Daisy web-site, there's a Link on here.  Take a list of symptoms with you to the appt., can someone go with you to push the point? 

Do a search on here for 'Mirena coil' to see how other ladies have got on with it.  I'm sure someone will be along with advice!
Title: Re: Please please help me! Updated
Post by: Mary G on October 03, 2016, 02:00:49 PM
Sorry to hear that you are not feeling any better.  From what you have said, it would seem that you do indeed need a serious hit of oestrogen.  From my experience (and yes, I know other women will have had very different experiences so I am only speaking for myself here) that level of oestrogen would be completely useless and in my opinion, it is far too low for a woman of your age.  My blood levels were also very low while using a 50mcg patch and only improved once I switched to Oestrogel. 

I don't know how well you would do with a Mirena coil, it all depends on how well you tolerate synthetic progesterone.

Have a look at Professor Studd's website, he talks about progesterone intolerance and the 7 day 100mg Utrogestan/Oestrogel regime and this might be something you could run past the gynaecologist.

Hope that helps.





Title: Re: Please please help me! Updated
Post by: Pageup on October 06, 2016, 11:28:24 AM
Hi Flufferama, I'm very sorry to hear that you are not feeling so well. 

As I'm sure you know, all our hormones work together and affect each other.  You might consider tests for thyroid and adrenal function.  A racing heart at 5 am might be because your adrenals are struggling.  Hair loss, anxiety, exhaustion may be a symptom of a thyroid problem.  There is help online if you find you have a thyroid issue.

Title: Re: Please please help me! Updated
Post by: flufferama on October 07, 2016, 08:19:18 AM
Thank you for the replies. Pageup I had my thyroid checked in August and it's OK.

I got absolutely nowhere with the gynae yesterday. My oestradiol is up to 700 (day 21) bloods and he says that's great. He told me he doesn't know why I'm waking with hot flushes and adrenaline at 5am every morning. He was completely uninterested in my progesterone, which is low.

He told me to get a second opinion, and has referred me to another gynae. I told him I was concerned about using unopposed oestrogen (Evorel 50) at the moment and he said it was OK.
Basically, I've got nowhere with him.

Is it because I'm still having regular periods that it's the fluctuations and not a lack of oestrogen now causing these issues? My oestrogen is not low any more. Maybe this will improve over time? I asked about the BCP to prevent ovulation completely and level things out and he refused point blank to prescribe it because I'm 40.

I really don't know what to do now. I woke this morning at 4.15am and had four huge sweats/flushes one after the other, I've been wide awake since then. Felt so dreadful I couldn't take my son to school and had to get DH to do it. I'm on Day 11 now and usually ovulate around now so maybe that's relevant.

I will go to see this other gynae anyway and see what she says.

I'm trying SO hard to stay positive and carry on but I can't see any light at the end of this tunnel at the moment and it's devastating.
Title: Re: Please please help me! Updated
Post by: MIS71MUM on October 08, 2016, 11:59:45 AM
Hi
If your oestrogen levels are now quite good and you still have regular periods, and you are approaching mid cycle, maybe you oestrogen levels are temporarily too high. In addition, if your progesterone levels are also low right now when they should be high, this could be causing the feelings you are having.

I'd definitely get a 2nd opinion? I know how you are feeling as I have been there myself. Sometimes too much oestrogen is as bad as not enough, different feelings but both unpleasant.

I too, have suggested the pill qlaria and zoely, but was flatly refused - I'm 45! My next step is the mirena with a patch.

There's a lot mentioned about needing oestrogen but I really believe it's about a balance of all oestrogen, progesterone and testosterone. Good luck xx
Title: Re: Please please help me! Updated
Post by: flufferama on October 08, 2016, 12:03:10 PM
Thank you so much Mis71mum. I wrote another post before I saw your reply! I hope you're doing OK yourself?
Title: Re: Please please help me! Updated
Post by: GypsyRoseLee on October 08, 2016, 06:23:02 PM
Hello

I had to post because you sound exactly how I was a while ago.

I have always suffered with PMS, and had awful PND after my first baby was born. Just felt totally hopeless and despairing, and terribly anxious all the time. Luckily, SSRIs did help me, though. Eventually I made a full recovery and was fine for years.

Then about 4 years ago, I started to feel odd. Mid cycle I would feel totally stoned and dreamy. But then my PMS would kick in, much earlier now, immediately after ovulation and I would feel very flat and hopeless right through until my period finished. I was only getting about 10 normal days a month.

Then suddenly my periods started getting closer together (went from 28 day, to 24/25) and they were so much lighter, and a bit stop/start. Just like your's I think?

And that was when the awful low moods started coupled with intense anxiety. Just the same as you, it was just the same as how PND had made me feel, but this was more intense. I also started having insomnia (first time in my life) and waking too early at about 4am, filled with dread.

I thought I was losing my mind, it was so frightening. But then suddenly the awfulness would lift, and I would feel almost normal for a few days. But it was a constant rolletcoaster and I never knew how I was going to feel, from one day to the next.

All my bloods came back 'within normal range' for a woman in her early 40s. But like you, other women in my family had gone through the Menopause in their late 30s.

My GP agreed to start me on HRT, a 50mg patch with separate Utrogestan. But to be honest it didn't make much difference. Still getting normal days/weeks but then the awful lows and anxiety too. So I tried the BCP to try and shut down my cycle totally, but I reacted badly to the synthetic progesterone in it and it made me feel suicidal.

So I went back to HRT. Then suddenly at the start of this year, my symptoms got much worse. I thought I was going mad. The depression was so bad, and I just felt filled with despair. The anxiety was so extreme that I became terrified to be on my own. I ended up being signed off work, I thought I was having a breakdown.

Then I went to see Prof Studd. Initially he started me on 3 pumps of oestrogel with separate Utro. It helped a bit, but not enough. So he increased me to 4 pumps (he said that 3-4 pumps is necessary to combat hormonal depression and anxiety) plus testim gel, and within 24 hours I felt a difference. For 10 days I felt like the old me again. Calm, optimistic and outgoing. Then my period arrived and it all came crashing down again.

In desperation I saw my GP who suggested I added a mild SSRI to my regime. So I started on Sertraline, and within a day started to feel a difference.

That was 4 months ago, and I am in such a better place than I was at the start of the year when suddenly everything crashed down (like you this last month?). I still have a few bad days, but I cope better with them because for the rest of the time I feel so much better. I do notice that I feel more anxious mid cycle for 2-3 days, and again just before my period.

Last month I had a a nasty patch when I tried to syncronise taking the Utrogestan at the same time my own progesterone was rising in the week prior to my period. I felt dreadful again, I came home early from work and just sobbed hysterically. I panicked and saw a GP (a different one) who thankfully had an interest in perimenopause and she assured me that I was just reacting to too much progesterone (my own + Utro).

She advised me to try taking the Utro only every 3 months, and that because I still have regular periods (even though they're so light now) I am still producing enough of my own progesterone to protect my womb lining.

So, sorry for the essay but I wanted you to know that you are not alone, and I recognise everything you describe. But also wanted to reassure you that you WILL get over this. I strongly suspect that you just need much higher doses of oestrogen (a 50mg did nothing for me either). Prof Studd did my bloods and my oestrogen level was 703 (about 5 days before my period was due) and that was with using 4 pumps. So, it wasn't 'high' at all, he told me so. He said he has women with levels well over 1000! He also said that some women just need much more oestrogen than is considered 'average' and that I was one of them.

Now, I don't know if it was upping to 4 pumps which 'cured' me? Or whether it was starting Sertraline? Because I started both within 2 weeks of each other, I can't tell. But my new knowledgeable GP thinks it's a combination of the two.

So, as of now, I feel 95% back to my old self. I'm back to waking about 7am. I am back at work and enjoying it. I feel outgoing and positive again. My period is due tomorrow, and I can 'tell' because my heart rate is slightly faster, am getting a few palpitations and I feel a tiny bit on edge. But that's all, and it's nothing to how I have felt.

There have been times these last 8 months where I genuinely thought I couldn't carry on and I had some very black thoughts which terrified me.

I hope you get the help you need, and I hope my story gives you some hope, because I have been exactly where you are now.
Title: Re: Please please help me! Updated
Post by: flufferama on October 08, 2016, 06:46:30 PM
Gypsy thank you SO much for that, I'm so sorry you went through all this too. Your experience is so like mine.  :'(

Which BCP did you try and was it back to back (no withdrawal?) Had you had issues with BCP before? It seems such a risky thing for me to try but I'm truly desperate at the moment.

I'm not in the UK so to travel to Prof Studd would cost me huge money - I'll find it if I need to, you know how desperate it feels - and also I doubt I'd get to see him this side of Christmas?

I was given Sertraline when I had PND and I lasted five days on it before becoming suicidal. I was immediately switched to Escitalopram and persisted through hell with that for six weeks until I could take no more and begged to be admitted to a psych hospital. The psych told me there I was too activated by SSRIs and while leaving me on it (because you can't just stop taking it) he had to add an antipsychotic to bring me down off the cliff. I ended up in the hospital for 6 weeks and remained on both meds for two years. Weaned off them slowly and was absolutely fine (until the severe PMS hit, which was sorted with oestrogen for 7-10 days)

So I know in my heart that if I need to go down the antidepressant route it will involve a stay in hospital and/or serious mood stabilisers which I am reluctant to take, I was like a zombie for two years. If that's what I need then I'll do it but it's the absolute last resort for me.
I so wish I could take an antid and feel better, it would solve so much of my problems.

I'm really glad you're back to yourself but I am so sorry you went through all that.

Maybe when I get to see the endocrinologist I will take a print our of Prof Studd's regime with me and see if he's open to trying it.
Title: Re: Please please help me! Updated
Post by: GypsyRoseLee on October 08, 2016, 07:20:33 PM
I really feel for you so much. No one can understand how dreadful and desperate it can make you feel, unless you have been there. It is evil.

To answer you, I firstly tried Microgynon back to back, and had constant spotting and still getting bouts of low mood and anxiety.

So I switched to Marvelon and felt fantastic for 3 weeks, but then I inadvertently didn't take it for just 4 days (forgot to pack it for a weekend away) and my mood just plummeted. I felt so dreadful, just awful. I started taking it again but my mood didn't improve, even after being back on it for over a week. I couldn't stand it anymore, so stopped taking it.

Looking back I now know I crashed due to the sudden progesterone withdrawal. Last month I felt horrible on the Utro, then felt 10 times worse 4 days after stopping it when you're hit with the withdrawal crash, too.

For some women, progesterone can be pure poison.

I really, really hope you get some good input from your endocrinogist. I do know that in the most severe cases of PMDD you can have Zolodex injections to totally shut down your own cycle. Then, you won't have your own fluctuations disrupting your HRT.

I do know Prof Studd is an.advocate of a hysterectomy with ovary removal as the only sure fire way to 'cure' this. Seems drastic, but I would have jumped at the chance if it would have stopped the awful feelings of dread and despair.
Title: Re: Please please help me! Updated
Post by: flufferama on October 08, 2016, 07:30:31 PM
Oh thank you GRL. I'm trying to figure out which pill to ask for, possibly something more estrogenic. I can only try it. If you have any ideas on which one to ask for PLEASE let me know.

I get a few decent weeks (by decent I mean anything better than right now) I will be able to make it to the endocrinologist appointment without having lost my marbles completely. My last visit to the gynae was one long crying spell, I don't think I said half of what I needed to say because I couldn't get the words out.

My sister had Zoladex injections in the past, she had endometriosis and cysts. She went though absolute hell, and that was without the psychological problems I have! She got all the nasty physical issues and escaped the crazy. I have zero physical issues and all the head madness.

Now if only I could find a gynae who would give me a hysterectomy.....