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[Jobo]

 Something has changed and I can't work out what has happened.  I am a shadow of my former self in the matter of 6 weeks, I feel desperate and can't work out what is wrong.

I have been post menopause for 6 years, I am 49 and after a few years of trialing different HRT thought I had cracked it when I had a mirena fitted and started to use the gel 2 years ago.  I had a terrible time up until this time, during which I have had 3 hysteroscopy' s and terrible side effects from other HRT products. 

Everything went well for 12 months until last June when Ectopic Heart beats took over my life, these lead to tachicardic runs which were very distressing and kept me awake with my heart racing and pounding all night.  This has been investigated and I have a good heart. 

The only thing I could think was triggering these ectopic beats was Oestogel.  I was administering 1 ½ pumps daily but 1/2 in morning then 1 in the evening.  I changed to trial and started to apply all in one dose in the morning and this seemed to lessen the episodes of beats.  That was the beginning of January and was working well until 6 weeks ago – BOOM!  Everything changed.
I had the most hideous experience ever, where I went dizzy, disorientated and was shaking uncontrollably.  It was out of the blue from nowhere, I had no idea what was happening and have since learnt it could have been a panic or anxiety attack.  It happened again a couple of weeks later.  Since then I have felt absolutely terrible, I am tired all the time, I have no energy whatsoever, I have dry skin, my nails are breaking, blood shot eyes, floaters, headaches, dizzy spells, no motivation, loose bowels, high blood pressure, burning sensation and pain in left breast, peeing all the time, bloated and the list seems to go on.  I am so tired when I wake up and it takes me until lunchtime to feel some kind of normality.  Also during this time I have had a clear mucus type discharge.

I've had antibiotics for sinus infection, been sent to A and E and had numerous doctor's appointments.  Over the weekend I had a slight bleed, with a discharge.  Saw the doctor again on Monday, this will be investigated but he seems to think all of this is lack of oestrogen.  I am not convinced. The bleed doesn't make sense.  Since I had the bleed I stopped having the gel, and have for the past couple of days felt better.

All my bloods have come back normal.

Can anyone offer advice or share similar experiences or even suggest what this could be.  I am desperate, I want to feel well again.  It's affecting my home life and work significantly I am struggling to function daily! I am so worried.

Could my Mirena have come out, could it have moved, could it not be working effectively? Is my body rejecting the Gel, am I having too much?  Questions Questions, I am so confused!
The only way I can describe this is like I am being poisoned!

My last Estridol blood test was 115pml, approx. 5 weeks ago is this low or too high for me? Previous readings have been higher so again doesn't make sense!

I hope someone can help,  this forum is a life saver for me, I don't know where I would be without it!

[CLKD]

How long has the Mirena been in?  It can 'wear out' after 4-5 years I believe?

[Dotty]

It sounds to me that your symptoms are due to low oestrogen and you need more gel x

[MicheleMaBelle]

Agree with Dotty. Why don't you trying upping the dose to 3 in total and see if this helps?
Don't use the gel ( didn't get on with it ) Does sound like you don't have enough oestrogen

[Sheanie]

It does to me too. A number of the symptoms you mention are related to oestrogen deficiency. (Nocturnal) hot flashes lead to an adrenaline surge lead to racing heart, palpitations and chest pain. Tiredness, low energy, headaches, bloating...all signs of oestrogen deficiency. But 112pg/ml is okay for a postmenopausal woman, I think. Though you say it was higher before. Maybe it's the drop that's affecting you?

Have you considered the Mirena may be causing some of your symptoms? I had one for quite a while and have since realised it may have caused problems I put down to other things. Wouldn't touch progestins again. If it's worked for 2 years though... Did you know that the Mirena gradually gives off less levonorgestrel, from 20 mcg per day to 10 mcg over the 5 yrs it's effective.

Anxiety is also a symptom of low progesterone.... Could you need more oestrogen and some systemic progesterone?

I think the advice re potassium, etc. is good too. It may not be (entirely) the hormones that are causing the problems. Lots of potassium in bananas, pink grapefruit, kiwis.....

I'd be interested in the other replies you get here. Good luck. Hope you feel better soon!

[Jobo]

Thank you everyone for taking the time to respond, it all sounds really odd and I was worried people might think I have totally lost the plot.  I broke down twice at the doctors and they just looked at me like I was an idiot which made me worse!

Birdy, apologies the discharge is down below, not sure how to describe it only it's thick, mucus like,  mostly clear and almost looks like the gel! I just started taking magnesium, Vit B complex, Vit D but will definitely look at taking the potassium.  Bloods were checked for Thyroid, Folic, B12, Liver and kidneys I believe.  I have tried all other progesterone's and nothing suited and caused me no end of problems down below.  I have been fine with the mirena until the last 6 weeks, for the first 2 years I felt great like a new women and thought I had finally cracked it! 

 MicheleMaBelle I am frightened to death of increasing the dose because these terrible feelings and symptoms occur just after I apply the gel.  Maybe this is all in my mind!  I have been great for the last 2 years so find this all so strange. 

CLKD the Mirena has been in since April 2016 so 3 years.

[Ladybt28]

I'm with the other's too Jobo.  All those symptoms are exactly the same as I had had been on Prempack C (now discontinued) for 4 years by the time I was the same age as you 49.  They started and got worse after 50 and became absolutely horrendous as you describe but I didn't know any different so although I went to the GP they didn't connect it with the "wrong for me" hrt which obviously was working!  Then started 4 years of hell to get it right.

You say you are post meno at 49.  How did you know you were post?  Blood tests are very unreliable and I started my hrt before I was post.  I have no idea when my hormones actually "stopped".  You may have seen a sudden change because any hormones your own body was still producing have dropped to almost nothing and the ones you are using are not high enough to take over.  Your body may just have had a "last hurrah!!" and now cant cope all of a sudden.

1.5 pumps is very low I am on 4 which is considered high but my body cannot manage with less otherwise the symptoms come back and "I don't feel well".  There are loads of us on higher than that or higher patches and pills. I had all the symptoms you describe which you wouldn't think are meno symptoms, like the nasal drip, palpitations etc.  I have 4 pumps of gel, 10 days of Utrogestan as progesterone and 3 pumps of testosterone a week.  I bleed cos I choose to although the GP's think I shouldn't cos I can't balance a continuous regime which is what a mirina is supposed to achieve.

Have they done a thyroid test in amongst the loads of tests you have had?  The thyroid can go up the left in meno and contribute to the symptoms.  Having ruled anything serious, like heart and stuff the doctors seem to think it is hormonal and that would be not enough hormones not too many.

I would up the pumps too.  I also agree about the mirina - depends how long it had been in, it may be tailing off.  Get  a thyroid test if you haven't had one.  It's not unusual for things to stop working during our meno journey's at various times.  You will find loads of posts here saying "I was ok and now I'm not".  Our bodies are changing as we get older and the meno journey can start early and last 20 years or for ever...its something people often forget.  I don't think there is anything major to worry about, you just need to get your hormones rebalanced for this "time in your life", which as loads of us know is sometimes easier said than done   Keep posting and let us know but I would settle on hormones and work at that to get it right.

[Hurdity]

Hi Jobo

Sorry to hear about all of this.

I presume your estradiol blood test was in pmol/l which is normal for UK -you just said pml but I assume that's what you meant? Although one-off blood tests don't mean a lot, if you are post-menopausal and were taking 1.5 pumps of gel at the time of the blood tests then this is low and as the others have said could easily account for some of your symptoms.

The sudden attack is hard to explain though - it really does sound like something hormonal or metabolic and I agree with Ladybt here - a thyroid test would be in order - get it done in the mornings and ask for the actual results because even if within range can still cause women to feel unwell.

I don't know about the Mirena coming out - maybe you can ask about this? However after 3 years there should be plenty of progestogen left - it actually continues to give out some for around 10 years I understand but only licensed for endometrial protection ( womb) as part of HRT for 4 years (this is because there is insufficient research for longer periods of time), and 5 for contraception.

I presume you were post-menopausal ie 12 months without a natural period before you started HRT? If you had had a Mirena or were taking the Pill or the mini pill then you cannot know for sure.

Can't explain the bleeding as it certainly can't be due to excess oestorgen and thickened lining with blood results that low - too much progestogen with insufficient oestrogen can cause over-thinning of the uterus lining and sometimes ulceration which can also lead to spotting. Why this would happen after 3 years I don't know, if you have been on a constant dose of oestrogen for two years - although your natural oestrogen levels will continue to decline for two years approx after your last natural period (if you know when that was). As ladybt said maybe you had a late ovulation though this is unlikely 6 years after menopause.

Hurdity x

[Sheanie]

"I presume your estradiol blood test was in pmol/l which is normal for UK -you just said pml but I assume that's what you meant? Although one-off blood tests don't mean a lot, if you are post-menopausal and were taking 1.5 pumps of gel at the time of the blood tests then this is low and as the others have said could easily account for some of your symptoms." (Quote)

I assumed pml meant pg/mL, so 112 would be okay for post menopause. But if pml means pmol/L, then yes, 112 is low. Sorry for any confusion. I should have asked you Jobo.

Female (premenopausal) - 30 to 400 pg/mL (110 to 1468.4 pmol/L)
Female (postmenopausal) - 0 to 30 pg/mL (0 to 110 pmol/L)

[Jobo]

Hi Ladies
Thank you so much for all the replies.  I don't know what I would do without you all!

I had a bad week last week and was unable to function properly, it doesn't help I have been so worried about all of this.  So the visit to the doctors on Monday prompted another appointment to gynaecology for another Hysteroscopy.  I had this on Friday, luckily, she scanned me, and she did not see the need for the full biopsy.  My lining is very thin and everything is as should be.  Mirena is still in place.  She told me to get back on HRT as soon as possible.   

With regards to last bloods, I am assuming the reading is PMOL but will definitely find out today and based on what everyone is saying 112 is low.

I had up until Friday not been on any HRT, the first couple of days were not too bad and I felt quiet normal.  By Friday, I was a mess! So could not wait to start back on the gel after the appointment.  Felt okish over the weekend but I appreciate the oestrogen is still getting back in my system.

Something else popped up in my mind; could the sudden surge of oestrogen after I administer the gel be causing me issues?  I have noticed I feel a bit rotten for approx. 3 hours after applying.  Would a patch lesson this? 

I am still so confused by it all!

Just to confirm, I have been post-menopausal for 6 years at least, and am 49.  I have not had a period for probably 7 to 8 years.  By the time I realised what was going on, I was classed as post-menopausal. (another long story)