Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Joesmum on February 27, 2017, 06:27:03 PM
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Well I'm normally with the "no ovaries" girls on our "surgical menopause" thread but I thought I'd cast my net wide to see if anyone has wondrous things to say about Tibolone?
I am crossing all my fingers and toes...
Currently I'm on 50 mcgs of EVOREL and struggling to increase it to 75mcgs without terrible side effects including psychological ones. Not nice.
So this morning my endocrinologist suggested that I try Tibolone
I suggested trying Estrogel again but at a lower dosage ( like 2 pumps instead of 4) so as not to trigger the horrific anxiety that it caused previously but he said we should try the Tibolone first.
He's a fab endocrinologist and he's brilliant with my hypopituitary problems but I confess I'm worried.
Has anyone got any good news for me?
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I'm a newbie to Tibolone, just started my 3rd month, hysterectomy saving ovaries 1999 but ovarian failure soon after but last year a scan couldn't find ovaries and the sonographer reported that she's convinced they've dissolved and gone. I think my gp and gynae must've agreed too
So been on oestrogen only hrt and have struggled badly since 2012. Like you I cannot tolerate any oestrogen above 50mcg comfortably
Pros I've noticed these 2 months :
Sexual response better
Hair more manageable
Better mood
Social anxiety a little improved
Bowels better
CONS:
weight gain (@5llb)
Sore vagina externally despite using Sylk and vagifem
Not getting to sleep easily so now I take one phernergan tablet every other night
There are some common settling in symptoms like jelly legs, dizziness etc but fortunately I didn't get them. I had a hangover feeling each morning for the first 3 weeks
I'd always say it's worth trying. I have always taken the whole 2.5mg tablet but if you're worried maybe break it in half and settle in that way.
There's Tibolone threads and Suzanne tells a very honest detailed journey on it, she's doing so well
X
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Hi Joesmum,
I've have recently had TVH and BSO and am just starting on my hrt journey. Anyway I was put on tibolone and I managed 3 months but have had to stop. Terrible mood and anxiety issues. Was effective at controlling hot flushes though. My case is complicated by endometriosis and have swapped to primque. Been on it for a few days - so far so good. But by the look of things I think it might have been discontinued!
What I have learnt in my short hrt experience is that there are lots of types which affect individuals differently so might well but worth a try. And tibolone is unique in its method of action.
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So sorry to read of your prolonged difficulty which I can totally relate to! Hope it gets better for you soon...... :o Look forward to hearing how the Tibolone works out for you as this may be my next one to try if the estrogel and utrogestan doesn't work out. x
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I tried for a week and had to stop.. Bloating weight gain and just feel miserable..
I'm trying very hard to stay positive but I have had no joy in my journey since June 2016 to get on any kind of HRT regime
Thinking of going it without... using vagifem if I need to or something like that
very depressing - and no answers or help from any doc's they seem to all say well this is what happens just accept it
my hair has improved, but do I have to choose between being fat or bald?
Abby x
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I know, and I know others will tell me that, I just can't bear the feelings I am getting on ANY hormone regime it seems.. I blow up like a football and just feel wretched. My body is what I use to earn my living (I'm a yoga teacher) and not being to move around or feel energised is just awful, I feel like a ton of flab has been strapped to me and I'm being weighed down daily...
I think will just have to wait and see what the hospital advise, but I've been nearly a year without any real hormonal support ... I can't do another year like this! I feel I will go bonkers and just give up... I 'm going to try without I think and see how that makes me feel.. what else can I do?
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I'm sure lack of oestrogen causes the bloating and midriff too Abby, have a read in case I'm wrong x
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Yes I have thanks Joesmum and yes Annie I know that the bloating can be caused by low oestrogen.. I just don't know what to do, the patch seems to make things worse (when I was on higher levels I felt ten times worse) but maybe I should just persevere with raising it and see if that makes a difference to the bulge. I honestly am not eating anything that would make me put on weight this way.. I exercise all the time etc etc
Really really upset and frustrated :(
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Low testosterone too causes that - you are caught between a rock and a hard place here Abby x
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Hi Annie, yes I feel really unsure.. I think maybe sticking with low patch (and T) and then trying to increase patch slowly before hospital appointment in April... I'm on a total detox and cutting out carbs and alcohol for a month to see if that makes a difference...
it's really like my body has been taken over by aliens!
:'( :'( :'( :'(
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I know that feeling ! I'm suffering with my ears/sinus and extreme tiredness has collared me this past week ! X
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Sending you a hug and lots of support. xxx
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Same to you Abby - mwah x
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Thanks for the update and sorry to hear the Tib didn't work out. Hope the gel does the trick and yes please let us know :)
Hurdity x
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Hello Joesmum.
Sorry to read that Tibolone has not worked for you. I am trying it at the moment and although I don't feel good it's early days. I hope the gel helps you to feel better.
Wishing you well.
K.
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Don't feel a failure Joesmum, I persevered with tibilone for 3 monthsand it didn't work for me, at least you tried. Personally I think the gel/patches are superior x
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I had headaches in the early weeks
Out of everything I've tried hrt-wise this is the best I've felt (history below) , not 100% but definitely better than the other regimes
Libido not good but response REALLY good ! X
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I can't tolerate high oestrogen doses so I really sympathise with you
Although social anxiety hasn't completely gone there's a definite improvement on Tibolone but we are all different and how we react to each hrt. I do think you need to try it a couple of months to see. Is it worth a low dose AD alongside to help with the low mood ? X
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Hi Joesmum,
You've probably been following my updates on the other Tibolone thread. I take 125 Leveroxine at 6:00am then take my Tibolone at 5:00pm. The first few weeks were tough but stuck with it and it's week 12 today.....yippee. Still get a few funny head whooshes but calming down now. Sleep like a log but still feel drowsy in the mornings. This is common and in most cases improves.
I will write my update later on the other thread. All I will say is give 3 months as things have only just settled for me. The best thing is a MASSIVE improvement with anxiety, panic etc.
Feel free to PM me if you need more support.
Wxx
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Hi Joesmum (I'm a mum to Joe too)!
It seems I have no ovaries either and I'm ok on it. X
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Hi joesmun
Tibolone has worked and still is for me.
Here's a link to my thread but in a nutshell within 2 weeks, it gave me my life back.
https://www.menopausematters.co.uk/forum/index.php/topic,33667.msg557037.html#msg557037
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I've done a U turn!
I did one day of Estrogel which made me a bit anxious but today I decided to go back to Tibolone and give it a bit longer. I just thought ....NO! don't give in yet!!
( interestingly the Tibolone doesn't make me anxious?)
The side effects are not pleasant but im hoping that they may subside. It feels too soon to throw the towel in. Today has been ok. The Tibolone seems to make me very tired with a dull, mild headache and my mood has been Low.
I took my thyroxine this morning and my Tibolone this afternoon. I don't know if they interact but thought that I should be cautious and take them separately.
I'll keep you updated. Hopefully things will improve. I think it's the right decision.
Hi joesmum
I'm going through the same thing as you. Back at tibilone for the 4th time!
It seems like it's one of those drugs that if it suits you it's AMAZING, but if it doesn't it gives you a whole array of odd symptoms.
I'm struggling with strange physical ones, pain, ache fatigue. I imagine this is what cold turkey feels like. I have read on another group that studies where done halving the dose... And were as successful as the full 2.5mg. I've no idea why the dose was then set as 2.5 but I'm wondering if starting low might help??
Just an idea.
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It could be the progesterone part sedating you. I think I felt the effects of prog for quite a few weeks. I can still get tired but I also seem to have some staying power too to not nap (meno amongst many other things hit me with crashing fatigue) x
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No joesmun I didn't suffer any side effects at all. I'm sorry it's not working for you (so far).
I think honeyblossom has hit the nail on the head, it's either a 'miracle cure' so to speak or a step backwards.
It's a bloody complex thing this menopause business - sighs.
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Hi Joesmum,
I also have the sedative effect. Feel tired most of the day. I was the opposite on Oestrogel, fely hyper...... can't win :(
Wxx
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If you can stick with it, do
In the early weeks I had headaches , hangover feeling (prog) and lethargy
But honest, this is now the best I've felt in 5 years on hrt
I think Tibolone requires patience and time, it's not like sticking on a patch of oestrogen, your body has to make sense of the components and react accordingly , almost like it's learning where to aportion each part and then give the necessary benefits, I don't think there's many women on hrt that don't have some side effects, it's just how bad they are and how you can deal with them, I've got stiff joints, but the fact Tibolone has given me some wellbeing I'll take the trade off x
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Yes I felt tired in the early days and still can if I sit and relax, but in recent weeks it's given me some staying power, I'm usually awake at 6am ish and rarely get to sleep til gone midnight
I know and respect Tibolone won't be for everyone and I got away with some of the dreadful early side effects many women on here have suffered but it's like any hrt if you can tolerate 3 months trial to see if there are improvements. I promised my self my only other option after Tibolone would be to try nothing as oestrogen alone wasn't helping x
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Hello ladies.
Just catching up with this thread as I have been taking Tibolone for one month. I began by taking half a tablet at bedtime but for the last week I have added half a tablet in the morning so I am now getting the full 2.5mg albeit divided into two doses. I can't say I've noticed any improvement so far but I live in hope!
Joesmum. - I can completely relate to your adrenaline surges and feeling tearful. I also have the jittery/ internal shaking sensation which has been a frequent meno symptom.
I will of course update the forum on any progress.
Take care all.
K.
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Hi Joesmum,
3 weeks is still very early days. Tibolone is so different it does take time to adapt esp if your transitioning from oestrogel. The first 6 weeks were really bad for me. I had adrenalin surges, dizziness, jelly legs, so many strange symptoms. Only for the ladies on this site I would have jacked.
I'm currently feeling very tired as if I've taken a tranquiliser. Sleep well with no sweats but when I wake feel a bit flat if that makes sense? not depressed just flat as if my mojo has disappeared. Once I'm up I'm ok but still feeling lethargic. I guess like Annie said it's the prog kicking in. If no improvement by next week I will have my thyroid checked as it may be interfering with my Leveroxine.....
This morning was great, we had a 2mile walk along the beach. No anxiety or lightheadedness which as been a constant symptom for a couple of years.....
Take Care Wx
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Aw sounds like you have a plan joesmum, let's hope it works for you
Last week I got prescribed ovestin to use externally along with the vagifem internally, I suspect my drop in oestrogen didn't help but at least I'm getting more oestrogen to those bits now
Well my social anxiety played a storm yesterday on a meal out to meet my sons fiancées family, almost verging on detachment but not quite but I hated the feelings
Woke this morning with continuous palpitations and carried on at work, hated it as I had to take some time out for a scheduled hospital appt but driving to the appt I couldn't stand the racing heart then remembered to try to cough quickly. Straight away it restarted the beat and I was sooooo relieved
I'm really seriously considering asking doc for something to help with this social anxiety, it's cruel and is stopping me enjoying going out with people xxxx
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Hi there Joesmum - glad you are feeling encouraged.
Since thyroid has been mentioned it does say something about this in the product info:
Treatment with Livial results in a very minor decrease of thyroid binding globulin (TBG) and total T4. Levels of total T3 are unaltered. Livial decreases the level of sex-hormone-binding globulin (SHBG), whereas the levels of corticoid binding globulin (CBG) and circulating cortisol are unaffected.
http://www.medicines.org.uk/emc/medicine/8552
However it does say that T3 is unaltered - but this will be a study of x number of women - the fact that there is some effect suggests that some women might be more affected, and enough to notice. Great you are being monitored for this Joesmum so hopefully with tweaking you will get the dose right.
warwick - defo get thyroid levels checked in view of the above.
Hurdity x
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Hi Hurdity,
I am currently taking 125 Leveroxine, been on that dose around 7 years. I will give it a few more weeks just to see if it settles. If still feeling lethargic I will get tested. Thanks ;)
Joesmum - Do you mind me asking how much Leveroxine your taking??
Wxx
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I am two weeks into my second month last night I woke to go the toilet and was so dizzy I almost fell I feel wretched this morning Its the first time Ive had dizziness im really trying to go the whole three months but cant stand this .
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Anjia,
Dizziness was a big problem for me up until 3 months. I have some good days without the dizziness but then I can get a full day with the dizzies........ Had dizziness before HRT when I started peri 8 years ago :( I'm guessing my hormones still need to level out.
As we said Anjia if you can give it 3 months you will have a good idea if it suits you. As it's improved my anxiety will stick with it.
Wxx
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Hello ladies.
This thread continues to be an excellent source of information.
Joesmum - yes, it is still early days for me. I too used Evorel patches for a long time before changing to Tibolone so I'm sure there is a period of adjustment. I'm getting all sorts of surges today which is exhausting and unnerving!
Wishing you all well.
K.
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Hi Kathleen/Joesmum
I spoke with the pharmacist regarding all the strange symptoms. She said it is probably estrodiol withdrawl, in my case Oestrogel. That my body has gone into shock, cold turkey effect.
Just hang in there - I'm sure things will eventually settle
Wxx
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Hi ladies!
Just popping in very briefly. I'm 23 days off everything and my energy has returned! No dizziness, minor hot flushes (and I mean minor) after eating my main hot meal of the day only. Sleep is actually better off HRT! No change in hair or skin and NO ANXIETY! No urinary urgency either, and dryness just a little down below which I use YES VM for but I'm seeing my Gynaecologist next week to check about 'maintenance' down below. It's still fairly early days but I just wanted to update you. My 'blood sugar' issues have also now resolved and I don't need to snack as often and have been able to eliminate added sugar from my diet again (what a relief)!
I'll pop by from time to time but as you know I'm trying to move on as the constant obsessing about the menopause really did make me mentally very low and anxious. I'm sending much love your way!
Hugs,
Tempest xxxxxx
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Tempest !!!!!!
Aw it's lovely to hear from you. I've really missed our chats but fully respect you don't want to chat hormones. You're doing great au naturale . Re: VA, I now have vagifem and ovestin and not even completed my first week of ovestin and much much less uncomfortable
Take care and if you ever need a friend who waffles and talks rubbish please don't hesitate to message me xxxxxxxx
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That's great news Tempest!!!
happy to hear you're feeling better, long may it continue and if this current regime doesn't work for me - I'm going to try it too
Abby xx
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Aw bless you Joesmum, it's horrible when things don't pan out like we hope
I would imagine you could start on a low dose now and build up as and when needed, seeing as though we can literally start Tibolone the day after we finish whatever we were on
Good luck, I really hope you start to feel better x
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Do what ever makes you feel better and also if your mood dips dangerously low, please tell someone close to you. Don't suffer and don't do it in silence when there can be help for you. My mood has been low this week but I'm putting it down to image issues x
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Hi Joesmum,
Sorry your feeling so poorly, I can understand how your feeling. Well you gave Tibolone a good go and obviously doesn't suit you. If your mood is low I would suggest you start on Oestrogel immediately. Please keep us updated on your progress.
For me, can't say I feel brilliant but will carry on for now.
Thinking of you ;)
Wxx
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Its only been two days since stopping Tibelone and my mood is terrible I feel so angry I cant stand feeling like this my hormones are all over the place wish I would never have started it .
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Thanks josmum Its horrible isent it lets hope these feelings go as quickly as they came will we ever feel back to normal bloody hope so !!
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Sending much, much love your way Joesmum as this was EXACTLY how it affected me. I just had to get off it - I felt absolutely awful as time progressed.
Be sure to take it very steady, and do lean on those who love you for support at this very difficult time (as well as us here - we are always here for you too)! xxxxxx
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Hi Tempest,
I know how difficult the last couple of months have been esp with the Tibolone. Like I said to the other ladies, well you tried Tibolone and now you know it wasn't for you. Things will settle and you can put the experience behind you ;) sending you hugs x
Wxx
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Hi Tempest
Sending my love to you and hoping you're keeping well xxxxx
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Good luck to all you girls doing well on Tibelone dont be at all put off by us who it dident work for xx
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Thank you, Annie!
Sending you so many hugs - we must catch up soon but this be are a bit hectic here at the moment (non meno stuff), so I'm not on the internet too much at the moment. Speak soon! xxxxx
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I'll be at the end of an inbox/email when you've got some free time xxxd
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I think you have to give the transition time, start low and work up to a dose you're comfortable with. I've come to the conclusion (for me at least) I'm never going to be free of every symptom but I long and aim to eliminate the most troublesome
I was told this week by my well woman nurse that the first 3 months are settling in and the next 3 are it working its best. All easy to say if there's no nasty effects .
Years ago when my ovaries first failed I was given hrt and it was like a miracle within days and although I had to step up a dose it took every symptom away for 13 years, I've never been that lucky since x
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I don't have any experience with oestrogel but I've always liked the idea that it must be the easiest way of adding/reducing amount of oestrogen. So I can't advise on what to start with only go low and then add on accordingly, I guess if it's recommended to start at 2 pumps it's worth a try x
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I took Tibilone for 15 years and felt great, no side effects ever, nothing. However when I reached 70 last year, my doctor accepted that I wanted to stay on HRT but said he would like me to change to Elleste. After 3 months I began to bleed, had a clear scan. Four months later I had two successive bleeds that felt like full blown periods. This led to my having a clutch of tests including a biopsy. All clear again, thank goodness. The hospital consultant was very supportive and recommended me taking Tibilone again. So I'm back on it and feeling very good and positive about it; I just could have done without all those tests! Tibilone is great as far as I am concerned.
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Hi Marian
Welcome to our forum. Hopefully you will stick around and can give support to other ladies xx