Menopause Matters Forum
General Discussion => New Members => Topic started by: Mer109 on January 14, 2017, 04:32:22 PM
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Hi Ladies
I am new to site and finding my feet, I have been reading all your joys and concerns......
I had TAH/BSO 11 weeks ago I am 49 and was not entering the wonderful world of menopause as far as I was blissfully aware. 3 months prior to hyster I was given monthly inj of prostap. All ok. Was prescribed tibolone to begin straight after op as would enter surgical menopause.
All going ok until week 5 post op, woke to a feeling that someone was shaking the bed, was asleep alone, my eyes were involuntary rolling and I became so unbalanced/dizzy I started to vomit, this episode terrified me and I called 111, advised to visit ER who gave me an injection to stop vomitting and sent me packing. Since then I have been continually so dizzy/unbalanced and feeling like I may faint (I never faint tho) I am sleeping with light on sitting up and won't let hubby in the bed in case he moves!!!! Doc not really interested given mess to mask dizziness which work slightly I suppose and have been referred to dizzy clinic - 6 months wait. Due back to work next week and I have back tracked in my recovery, haven't left the house in over a week, I was making an attempt to go for a walk daily. I have started to take vitamin d and multi vitamin in an attempt to be normal again, does anyone have same symptoms or think it can be related to hormone imbalance?
I am fed up!!!!
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Mer, I.can tell you EXACTLY what happened. This is known as a 'hormone crash' and is unique to us surgical ladies! Basically, it's the point where all your stored hormones have left your body. We build up a 'reserve' which we then burn through pretty fast post surgery! The dizziness is due to low estrogen and also the imbalance this causes on the neurotransmitters of the brain. First and most importantly - you're not going crazy, I promise! It never ceases to amaze me that Consultants and doctors in general don't know about this phenomena! :o
Are you still taking Tibolone? And is it possible to have extended leave from work and a phased return? This is a very hefty surgery so you'll need lots of time to adjust. Oh, and also most of your hormone production will now switch to your adrenals unless you have sufficient hormone replacement on board. It is VERY important that you remain as stress free as possible until you are established on a stable HRT regime.
Please feel free to ask anything that comes to mind - if I can help, I'll certainly try my very best! xxxx
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Hi and welcome
Tempest will be your best person here along with AbbyH and was there another one Tempest ?
I can't help with all this as my situation is different although I have no uterus and apparently no ovaries either but mine was not sudden although I believe my hormone depletion was sudden
Just wanted to give you a virtual hug xx
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Hi and welcome to MM Mer109
Tempest has given you some great support. I think it is inevitable that the body will ‘crash' at some point following such major surgery. It takes at least 3-6 months for the anaesthetic to work out of the body and on top of that you are being deprived of vital natural hormones. Though you are on Tibolone, this may not be giving you all the hormones you need. You certainly shouldn't be going back to work yet.
I would ask for a referral to a gynae - or maybe you have a follow up appointment with the surgeon? You will need to be monitored regarding your hormones and possibly some extra oestrogen at some stage.
Don't rule out this episode you had as simply a virus - I had an episode like that about 3 months ago which was really frightening as I was at work - I was suddenly really dizzy and violently sick.
Take it easy - I'm sure things will settle. DG x
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Hi Mer109
:welcomemm:
So sorry to hear about your horrendous dizzy episode. As Tempest says your body has gone into hormonal shock and it is natural for different women to experience this to a greater or lesser extent. It will take months before you are fully recovered so you must take it easy!
It is surprising to have been given Tibolone post op - was this from a gynae? Women are usually given replacement oestrogen as Tibolone is usually for women who still have a uterus as it has a progestogen-like compound, which you don't need (although some women in your position are exploring this unusual option I gather). However it may well be you were given it, because it also contains a testosterone-like compound and some women are given this too ( off licence) after hysterectomy/BSO because the ovaries produce a proportion of this. Perhaps this tablet, combined with the shock of the operation and the sudden drop of your natural hormones, contributed to your dizzy problem, but it is good that it is being investigated separately - just to ensure nothing else is going on coincidentally.
Besides referring you for the dizziness, has the doc or your gynae suggested perhaps changing what HRT you are using - perhaps to a patch or gel - which deliver oestradiol through the skin so don't have to go through the liver or digestion?
I do hope you start to feel better soon as your hormones start to stabilise and your body adjusts.
Hurdity x
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Hurdity I think gynaes are changing their views (and quite rightly so) about Tibolone after hysterectomy
The gynae my GP referred to for advice for me suggested Tibolone first then 2nd option would be testosterone gel. My GP gave me the option on what to choose x
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:thankyou: Annie0710
Hurdity x
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Ladies
You don't realise how much relief this information brings, I have begun thinking that I am losing my mind!
Yes, I am still taking Tibolone (this was prescribed by consultant who completed op, who still hasn't liaised with GP!) this is my 9th week of taking it. I was told by nurse that I need to take it for at least 3 months before I even contemplate changing it? my GP is not interested entering into discussion. I could maybe request to see consultant again? Or see a different GP in practice.
The GP prescribed cinnarizine for dizziness and I take four meds for hypertension so at the moment I feel like I am rattling. ( I was going to go to Boots tonight to buy some vitamins, do you think this is pointless at the moment?)
Back to the Tibolone, no hot flushes, no night sweats, no low mood (apart from being p***** off about dizziness and anxiety surrounding if it will happen again?? Feel like I would like to attempt post op sex but dizziness/ balance has put paid to that! Not sleeping but think that is down again to panic that it may happen again? And obviously sleeping sitting up with the light on......
I have an appointment with GP next Saturday re return to work, date I was given was 23rd Jan, but at the moment I darent leave the house, I tried to go to supermarket and thought my legs were going to give wAy, panicked and came home, thinking I was going to pass out when driving home.
To think 11 weeks ago I was managing a team of social workers and now I can't seem to carry out basic tasks, so thank you ladies, your support and advice is so appreciated.
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Dancing Girl, yes "probably a viral infection" that was GPs comment, your post comment made me laugh out loud x
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Meri109 - the ongoing dizziness could be the hypertension drugs - my mother takes drugs for high blood pressure and often feels really dizzy after taking them!!! A review of your drugs may well be necessary? Good luck DG x
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Remember that you have had major surgery it will take time for your body to get over the shock,don't be in a hurry to go back to work. Tell gp that you are really in no position to be contemplating this at present !
As an aside a friend of mine had to stop her tibolone as she got vertigo and dizzy on it,apparently a known side effect ,something to bear in mind perhaps.
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It really isn't unusual to use Tibolone post TAH/BSO. Professor Lumsden's team certainly prescribe it, as it is they who prescribed it to me! Some women cannot raise their estrogen levels high enough to include testosterone in their HRT regimes due to unwanted side effects, and therefore benefit from using Tibolone instead of separate therapy. Also, there are ladies who have had endometriosis and after TAH/BSO, Tibolone is indicated for HRT as it doesn't stimulate endometrial regrowth.
Also, Mer - I just want to ask if you're getting internal vibrating with your dizziness? If so, this is quite a clear indication that it is due to very low estrogen but as Dancinggirl rightly says, it's worth getting your BP medications checked. I have also particularly noticed that HRT affects my blood pressure, so things might have changed for you somewhat post surgery (I'm assuming you were prescribed these drugs and dosage prior to surgery)? I naturally have low blood pressure, and sometimes it can drop even lower when I introduce HRT - I'm not sure if this is a phenomena particular to me but it's worth getting a review and BP checks to see where you're at post surgery.
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I agree re the blood pressure meds! There could be all sorts going on here to contribute to your episodes. My M-in-law collapsed with dizziness and vomited due to her BP meds - when presumably her BP fell to low suddenly. It's gonna be difficult working out what's what but sounds like that's the first place to start before changing HRT!
Tempest - thanks - interesting re Tibolone - and yes I can see the point re the oestrogen levels - not good to take T if these are low! In fact though, I am surprised that Tib is prescribed for endometriosis - because one of the side effects of this is actually endometrial growth (so I have read). It appears it is not quite so good as continuous combined HRT with oestrogen and progestogen, at preventing stimulation of the endometrium and keeping it thin. :-\. However I can see that consultants need to go with what's available and in extreme circumstances having to do what's best overall even if there can be risks. After all it's possible to scan the endometrium so hopefully women are monitored regularly. We all should be actually!!!
Mer109 - things will improve - it is early days yet! :)
Hurdity x
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Thank you Ladies, my bp is stabilised on a day to day basis, no change after introducing Tibolone, I have monitored it three times a day since op (GP request) and not much change, I have been on same meds for over six years. (Interestingly, when I had the episode it went really high, but went back to what is normal for me, approx 131/81 on average, pulse 51
Internal vibrations? That is a new term for me, can you expand
So with your combined experience do you think that as I am 11 weeks post op, nine weeks taking Tibolone, the dizziness, my balance, unsteadiness, vision, heavy head may improve?
I really need to stop the taking the cinnarizine as I have put 6lbs on in a week!! (No weight gain with the Tibolone) however at the moment the least of my worries
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Mer, I can tell you that a hormone crash does indeed spike the blood pressure right up! Mine is usually low (under 120/80) but it spiked high when I was admitted to A & E after stopping my Estrogel abruptly once (I'll never do that again)!
I'm also over at Hystersisters (US forum for surgical menopause and hysterectomy ladies) and whilst treatments are different their experiences are obviously the same. The hormone crash is well documented over there - many, many have ended up in ER (as it's known in the States) not knowing what on earth is going on (usually again, having stopped their HRT abruptly from either high doses or close after surgery).
I can categorically tell you that you WON'T suffer another dramatic crash like that again provided you don't stop your HRT - if you would like to change it, make sure it's under supervision and don't stop one type and let your levels drop significantly before starting another (it puts far too much strain on the adrenals).
You can absolutely sleep easy now knowing that it won't happen again - I think this is putting you under a lot of stress and strain at the moment so if you know this, I'm sure you'll relax and your symptoms will ease. Remember to be nice to your adrenals - that means relaxation and LOTS of rest right now! xxxx
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Hi all
No change in symptoms, balance/dizziness driving me insane, hips achy and legs feel like they won't carry me, back of neck really tight probably due to not moving my head much tho because of my dizziness. Have not left the house since 4th Jan, not functioning at all. Still taking the meds G.P gave foe balance, dizziness but these are hardly touching me.
I put a call in for the surgeon who completed my op ( stupidly, in hindsight, went via insurance and the surgeon has not liaised with my G.P at all, so my G.P is just taking my word for op and the prescribed Tibolone presently, that's another hurdle. ( He thinks my symptoms are due to a virus, this is the 7th week and no improvement, he dismisses me when I speak about hit, hormones, previous op.....
Eventually, a week later he has phoned me to state that the "episode" which I do believe was a hormone crash as you have mentioned is probably nothing to do with the surgical procedure, he has never come across this before but to stop Tibolone and contact him in two weeks, if I feel the need. (He is so bad at responding)
I have contacted our local Pals group who have stated south tees have no menopause clinic to contact for advice and I am not in the "system" re my TAH/BSO as I went via insurance. Fantastic.......
I have read on NiCE guidance that if you enter into surgical menopause as a result of surgery you should be referred to a healthcare professional with expertise in menopause, good luck there then, similarly if you are prescribed hrt you should be monitored by a healthcare professional with expertise at 12 weeks than annually, I was given Tibolone told to take for three years, case closed!!!!
I will speak to G.P re who is allocated healthcare professional and who is reviewing my HRT .....wish me luck as 1, he has no knowledge of my being prescribed Hrt and 2, he himself has stated his knowledge re hrt/hormones is limited. He offered me anti-depressant when I said I could no longer cope feeling like this and I needed support, he has referred me to dizzy clinic, app 3rd June!!
Apologies for ramblings, but I really need someone's opinion on stopping Tibolone suddenly, will I have another "episode" as this really scares me.
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Oh god I'm really sorry that you haven't improved :-(
Do you feel it's the Tibolone ?
I honestly don't know about stopping Tibolone suddenly, given the journeys here by ladies on it it seems it's only about now or maybe in the coming weeks the side effects go as the benefits set in, so that in mind I think if I were you I'd be tapering, you could halve the tablet or scrape some off each day lessening the dose? Sounds a bit silly reading back but I honestly don't know I'm just thinking after 7 weeks although stopping it if it is Tibolone causing your dizziness you may be a bit worse before you're better ? Crikey sorry I can't help but didn't want to ignore your post xx
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Thanks Annie0710
I know, scary to stop, I have been taking Tibolone for 12 weeks this Saturday, I started the day after the op, dizziness began after the 'episode! At 5 weeks post op.
I have been reading up on Tibolone, that it isn't a hormone as such but your body breaks down to make hormones, wouldn't it be lovely for someone to take an interest and test your blood, or whatever needs to be tested to say 'yep' your body it making the right amount for you so crack on! Not just say ' oh just take it for 3 years'
I can see from your profile that you are taking it, how are you feeling on it?
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Hi ya again
I'd need to look up blood levels and Tibolone as I was kind of under the impression it doesn't show in hormone levels like regular hrt foes but I am prob wrong in that
Well I am on about day 20/21 and the weekend I started I was already suffering a virus but it went to my sinus and then both ear drums burst (been a bit of a nightmare) allergy to ABs so given steroids now I'm on nasal steroids SOOOOOO...... given all that I've been pretty damn ok on Tibolone. I had some scary off balance/nausea moments but everything I read on the eardrums said it was common with that too
I feel bit groggy in the mornings, not unbearable but on the whole it seems, so far, to be suiting me. But it's still early days
X
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Hi again,
Do you put your off balance/scary moments down to Tibolone or the issues your are having with the virus/ears
I too was feeling a little groggy initially in the mornings so switched to taking it just before bed and seemed to suit better, prior to everything else happening. I am clutching at straws thinking it may be Tibolone as a cause of all other issues but maybe not, I'm hoping not. "Everything you have read regarding ear drums" is this relating to Tibolone?
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Dizzy spells,nausea and virtigo can be side effects,it may well wear off if you persevere,unfortunately it didnt for my friend hers stopped the day she ceased taken it. Maybe give it a bit longer if you can.
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No sorry. When I read up about my ear drums it said you will probably suffer vertigo and nausea
An early settling in side effect of Tibolone also seems to be vertigo/nause (just read Dazned reply so could not go away, unless you persevere and see if it does) so I'll never know if it was Tibolone or ears, although it was only a few times it was probably the ear problem not the tibolone
The virus was separate to the Tibolone, I had the virus about a week before starting Tibolone but on day 3 of Tibolone my ear drums perforated
I was taking mine bedtime but have now switched to 6pm to see if I'm less groggy in the mornings, I don't know yet if 6pm is the best time
X
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Mer, you can and definitely SHOULD get your levels checked. Your GP can do this! And you need a referral to a gynaecologist as soon as possible who deals with HRT, if not a menopause specialist. Your dizziness is undoubtedly due to low estrogen and perhaps you're not absorbing HRT well via the oral route. Your GP can certainly switch you to a transdermal patch or gel to try - you don't need to suffer on like this! xxxx
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Oh I'm so rubbish at all this
Tempest you take info and restore it so well xx