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[Mer109]

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.

[Annie0710]

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

[Mer109]

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?

[Annie0710]

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

[Mer109]

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?

[dazned]

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.

[Annie0710]

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

[Tempest]

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

[Annie0710]

Oh I'm so rubbish at all this
Tempest you take info and restore it so well xx