Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: renee on June 24, 2017, 08:06:36 AM
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Hi ladies
I started Tibolone 5 weeks ago, Im getting spot bleeding which I know is initially normal but the other side effects Im not sure about and wondered if any ladies on here on Tibolone can relate....leg sweats, sleep anxiety, bloating and the weirdest dreams!!
Im also taking levothyroxine and fluoxetine.
Thanks ladies xx
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Hi,
If you go to https://www.menopausematters.co.uk/forum/index.php/topic,33626.msg539296.html#msg539296
You'll find the diary I started last October, actually need to post an update while I think of it as not been updated since the beginning of May.
There have been a number of others who have tried it too but some have not managed to continue due to various side effects, or they have found that they have not had the relief of symptoms that I have had.
I went on it having only been on Vagifem for a few years, and I don't take any other medication, so have no idea whether it's efficiency can be reduced due to interaction with other medication. I'm sure others have views/opinions based on their experiences.
If you search for Tibolone and you should find lots of feedback.
HTH,
S
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Hi Sooze
Iv had a good read through all the comments on your link, helpful and suppportive advice given. Cant see anything on leg sweats or bad dreams.
Might phone doc on Monday to get a bit of advice, I space my doses of thyroxine with hrt and prozac. Some nights my bed is soaking with the leg sweats and my dreams wake me feeling anxious.
I also feel a bit hungover but no alcohol involved (pity) hee hee.
Im bleeding again today so ye think I need a bit of doctor to patient advice!! Again haha
Thanks anyway and hope all is well witj you xx
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THe dreams could be the progesterone effect that Tibolone gives
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Could be Annie...I phoned my doc today but she's on her holibobs.
I woke after a 12 hours sleep and felt so tired and sweaty!!
I'm not sure if it's the HRT or if it's causing my Levothyroxine giving me side effects. Iv been on thyroxine for 11 years with no probs.
Bit confused....but maybe it is the Tibolone. 😅
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I Started off really well on it but then I was getting my typical high oestrogen effects, wired, racing heart, jittery etc so halved the tablet, but then I got the aching joints, night sweats etc
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Yes Anne I'm getting the racing heart sometimes through the night....
That's a pity that no matter what strength your taking, your having some kind of side effects. So, are you still taking Tibolone? X
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No i couldn't tolerate the aching muscles and joint pain, so started on oestrogel and Tostran
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I've just had a chat with my GP about trying Tibolone. I'm 56 and been on estradot for 9 or so years...I'll admit that the past year I've dabbled in expensive compounded HRT via the Gluck clinic in London. Way too expensive to keep going back for consultations just in order to tweak the prescription. As Estradot is bio identical anyway and the lozenges I was prescribed made me feel awful, I decided to save money and explore other things instead.
Cut to the chase..... I'm going to try Tibolone as, if it doesn't suit me I can always go back to the estradot. I'd eventually settled on 25 mcg as I'm very slim and have a low BMI so any higher than 25 made me feel like I could sleep, standing up! In fact as I write this I'm fighting sleep.
We're all different so it's really not ideal to compare with anyone else (as with anything in life). I'm interested in seeing how the Tibolone effects my energy levels as I've always had good energy but the oestrogen has zapped me a bit. Yes, it's a balancing act for all of us, isn't it? I've also got very dry eyes when I try higher doses of oestrogen (a common side effect).
I appreciate that the tiny amount of testosterone in Tibolone (which I need for energy) may increase the bit of chin hair I have.. urgh!.... but as my GP said... 'if you're not happy on it, then you can always go back to the estradot'.
I do remember when I introduced progesterone last year, my hair was in fantastic condition. Hahah... I was seriously depressed though. Progesterone is a funny old hormone. My hair sheds a lot now. It never seems to grown past a certain length. It is coloured and I do take care of it but it would be lovely for it not to fall out as much. Yes, I'm sure there are many others out there nodding in agreement.
I guess the deal breakers with Tibolone (for me), would be 'depression, hair loss/growth on face, or noticeable weight gain. I'll admit that in the research I've done this past weekend (looking at medical research papers, not chat sites), it would appear that yet again, it's a split as to people who love or hate it. Much like Marmite!
I was certain that i would have to wean myself off of the estradot, but my GP said that I should just give myself a few clear days from my patches and then start the Tibolone. It's awful isn't it... waiting for something to happen?
Has anyone noticed increased chin hair growth? Or, increased hair growth on head?
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Tibolone is notorious for @ 10lb weight gain
I had energy on it and NO facial hair. What was remarkable for me was orgasms, they returned and were great but no increase in libido
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Urgh!.....weight gain.
It would seem that most drugs do this. HRT, or not.
When I increased my oestrogen patch to, just 37.5 mcg, I had awful fluid retention, puffy face and feet. Could do my jeans up.
But then, not everyone gets this...apparently.
I'm keeping fingers crossed. X
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I've lost maybe 5lbs but I've gone from almost no exercise pre Tibolone to 4 times/week almost every week and look like I've lost more because I'm getting more toned. I've lost a lot of the 'sweet' cravings I used to get and am eating healthier too.
I had no energy for exercise before - my routine was work - eat tea - collapse in a heap. Now I'm like I was 10+yrs ago, so much energy.
Re hair growth, I've luckily never had a 'chin hair issue' and my body hair has always been sparse & fine, even more so since peri. Again I would say what hair I do have is growing a bit quicker, more like 10yrs ago, but I'm not getting any new sproutage.
I think I've been one of the lucky ones who's won the 'Tibolone lottery' with the combination of good effects vs side effects to be honest.
HTH,
S
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That's great news Sooze. Ha, I found myself tentatively taking 1/2 Tibolone just now, but perhaps I should take the full one. I think I'd read so many horror stories about the drug, even though I know logically that we all respond differently.
Your experience is inspiring and of course it makes entire sense that if Tibolone gives you more energy and motivates you to want to exercise more then you will keep weight down and tone up. For the past few years, apart from long bike rides, I had lost interest in exercise... and most other things. I know it was to do with my mood and menopause as prior to that I had always been into fitness.
You don't mention your age and, did you have a hysterectomy also?
What side effects have you had?
Such great news that you're happy on it. I'm' looking forward to some positive change with this. x
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Thought I would post my experiences of this new HRT. It's been so interesting reading Sooze's.
Well, it's only Day 2 on 2.5mg, but already I have noticed some changes. I decided to take it in the morning but I found that last night, I wasn't able to sleep for ages. Not exactly 'wired', but rather just 'awake'. Consequently this morning, I was tired. I'm thinking it's probably as simple as my body readjusting to it.
A noticeable (already) positive is that my face looks like it used to. That sounds bizarre and I can't put my finger on what it is but I am convinced that I was sensitive to the oestrogen in the patches and found that my face would swell. I'd also get itchy eyes and swollen glands. All was checked out but considered to be an allergy to the yam.
Not so good is that already, I'm struggling to get my jeans done up. Belly very bloated. Again though, I think this is just an adjustment thing. i remember 9 years ago when I started on patches, I blew up and felt awful for a month or so.
I get really distressed when I collect loads of hair from the shower every morning and my hair is breaking off quite badly, which i know most definitely is hormonal. I'm hoping that the progesterone component of the Tibolone will help with that.
Oh... ha.. also looking forward to (new and improved) libido coming back again.
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Pollyanna,
No, not had any surgery and currently 53. Before starting Tibolone, Sept 2016, I'd been off systemic HRT since March 2012, and just on Vagifem. Looking back I think this was a mistake for me & I feel I've lost 4yrs + to the crap that is post meno. I'm so grateful for my amazing husband who put up with everything, not knowing things were going to get better again. And boy are they better :bed:
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Gosh...Sooze... I feel I've lost many years and I'm still in the fog.. .haha.
I'm also not in a relationship, although i think I'm ready now. It's only taken 56 years.... ;)
Really great to hear that things are all 'tickety boo' in that department.
Great to hear also that the Tibolone is worth waiting out the awful side effects, to get to reap the benefits.
:)
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Thought I'd share some positive things I've noticed after only 5 days on Tibolone.
1. No more 'dry eye'. Had that for so many years on oestrogen. I haven't had to use drops at all today.
2. Allergic rhinitis seems to have disappeared.
3. Systemic candidiasis ditto. Hurrah!
That's pretty good for only 5 days and, it's incredible.... for as long as I've been on oestrogen patches, I had never put my allergies down to unopposed oestrogen.
I've spent hundreds of pounds on various complimentary therapies to treat 'symptoms', when it would appear that the cause was oestrogen. I even had a septoplasty operation due to the awful allergic rhinitis.
Just thought I'd share.
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Hi Ladies,
This is now my 10th week on Tibolone...there's been a few times where I contemplated stopping but I'm still with it.
My anxiety and sleep have gotten worse since being on Tib, which I spoke to my Doc about yesterday. She suggested giving it another month as it has helped my joint pain, pelvic pain, libido, vaginal dryness and energy levels.
It's a balancing act as the anxiety and insomnia are so awful, but the joint and pelvic pain were too!!
I also have an under active thyroid which I take thyroxine and I was diagnosed with complex PTSD a few years ago so I do take 20mg of Fluoxetine. I space out my doses, throughout the day so there's no interaction with the meds, I usually take Tib around lunchtime, don't know if changing it to night time would help my sleep or anxiety?
It's so difficult for us ladies at times....decisions, decisions xx
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Sorry, I forgot to add I bled for 7 weeks on Tib...which has now stopped.
Also, sometimes I get terrible leg sweats when wakened from sleep, but then some of my sleep feels like an anxious sleep....if that makes sense. X
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I tried Tibolone but I just don't think it was strong enough. After about 4 weeks I sunk into the most hideous depression and had to be put onto an antidepressant.
It also made me ache all over with extreme tiredness. I felt utterly dreadful. Truly.
I'm now back on EVOREL patches 50 mcgs.
I too take levo which did not seem affected.
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I tried it but had afwful acne and felt really angry all the time xx
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Tiblone
Hi ,I've been taking tiblone 2.5g for around 10 days.I realise it's early days but I wonder if anyone can advise me.
I have extreme insomnia almost a switch in sleep cycle , I cannot get too sleep until around 4am every night .
I don't want to do anything all day but lay down and watch TV .
I had had heavy bleeding for over a week.
I have also had livial injection a month ago .
Any advice would be appreciated please.
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Hi Battyboo
:welcomemm:
This is an old thread so you might want to introduce yourself on a separate thread so that more members can welcome you?
Sorry to hear about your sleep problems. There are various threads on Livial so if you go to the home page of the forum and type it into the search box ( also try typing Tibolone as well in a different search) - this should bring up other threads on this HRT.
Re the Livial - how old are you and where in menopause ie what were your periods doing before you started the Livial ie cycle length, period length and flow etc? Are you definitely post-menopause ( ie no natural period for 12 months)? Also do you mean you have been bleeding since starting the Livial or started bleeding afterwards ie just now? I didn;t know it was available as an injection!
If the tiredness is ongoing ie from before you started the Tibolone then you should get some blood tests done from the doc to rule out other causes eg vitamin or iron deficiencies, thyroid problems etc
You will find plenty of help and support here :)
Hurdity x
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Re the Livial - how old are you and where in menopause ie what were your periods doing before you started the Livial ie cycle length, period length and flow etc? Are you definitely post-menopause ( ie no natural period for 12 months)? Also do you mean you have been bleeding since starting the Livial or started bleeding afterwards ie just now? I didn;t know it was available as an injection!
Hi I'm 50
Thank you so much for your reply.
I'm not post menopausal.
I was still having very heavy regular periods every 25 days, for 7 days at least.
I had the prostap (livial) a month ago via injection at a menstrual disorders clinic.
Peri Menopausal symptoms, all of the usual.hot flushes, VA, Depression, anxiety prominent.
Two weeks ago I started tiblone.
My periods are heavier than before!
Chronic insomnia. Don't feel right.
Thanks
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I'm not sure but I thought livial was more for post menopausal women. I was on the it for 18 months and did not have insomnia but I had no energy, really tired and aching all over. I got really bad acne. It was good for libido and I did not put weight on. But I started bleeding after 18 months and had a biopsy which showed womb lining thickening. It returned to normal when I stopped taking it. It was very scary.
.
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Thank you so much for your reply and I hope your feeling better.
That must have been very scary.
I really do not understand it as I've read that also it's for post menopausal and I'm getting concerned as the heavy bleeding is not letting up at all ,7days now .
It was supposed to stop the menstrual.
::)
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Battyboo,
From what I've just read Prostap is not Livial - it's very different, Livial and Tibolone are the same and only available as tablets as far as I know and generally in the UK used when post menopausal - are you living outside the UK?
I've not heard of it before but Googling the patient Information Leaflet for Prostap says:
PROSTAP SR is a synthetic hormone which can be used to reduce the levels of testosterone and estrogen circulating in the body.
PROSTAP SR is used to treat endometriosis and uterine fibroids in women. It can also be used to reduce the thickness of the lining (endometrium) of the womb (uterus) in preparation for surgery.
It also says:
If you are a woman with submucous fibroids (benign tumours in the muscle underneath the lining of the womb), PROSTAP SR can cause severe bleeding when the fibroids break-down. Contact your doctor immediately if you experience severe or unusual bleeding or pain.
If you are a woman and continue to have periods (menstruate) after starting treatment with PROSTAP SR you should tell your doctor.
Side effects include:
Many of the side effects of PROSTAP SR are related to the decrease in oestrogen level. Oestrogen level returns to normal after treatment is stopped. Common side effects include hot flushes, mood swings, depression and vaginal dryness. As can happen naturally when women reach the menopause, PROSTAP SR can cause a small amount of bone thinning. Vaginal bleeding may occur during treatment.
Common side effects include Difficulty sleeping, headaches or hot flushes. - this might explain why you are feeling like you do.
Looking at this I would say your best course of action is to see your doctor at the earliest opportunity. What you're experiencing may be normal for this treatment, and I'm sure your doctor will advise further.
HTH.
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Hi hth. Thank you so much for your in depth reply.
Apologies yes I'm In the uk.
I had a prostap INJECTION to shut down ovaries and induce menopause. .
I'm taking tiblone hrt , started two weeks ago.
I rang today the GP but couldn't get an appointment.
I'm hoping to see a doctor tomorrow.
Doesn't sound great really does it.
I need some advice . It's not what I was told would happen from the consultant.
Best wishes, thanks again.
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Getting contact with gp's is a nightmare. Does your practice do phone appointments? You need prompt advice as my anxiety was terrible when I was bleeding. I am 60 so I knew it wasn't right!
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Hi I'm going to the GP today
Absolutely, I understand the anxiety it's the bane of my life.
Hope your ok. Thanks
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Hi
Well I went to the Gp who said she did not know anything about prosrap injections
And to get in touch with the consultant.miffed to say the least >:(
As they had said get in touch with GP for issues.
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I think these professionals sometimes enjoy pushing us minions from pillar to post! Poor you. What happened to these gp's caring for people.
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Indeed. Baffling sometimes.
So I guess I have wait weeks for another appointment .I wish to win the lottery so much just so I could have private health care and options . :-\
Thanks .
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Just found this old thread - I posted somewhere else 3 or 4 days ago about Tibolone but can't find it so hope I can continue on here?
Started on Tibolone today and after reading all the negative points, I'm willing my body to agree with Tibolone (but will try not be alarmed if it doesn't). I know there are ladies on here who will be able to answer my queries cos they've been through all this, and it's not a case of "trial and error" as my lovely, but oh so young lady GP is advising me right now!
Padine xx
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Padine - I took tib but only for a few weeks. I have real probs with progesterone and as this hrt's metabolites have prog, E and T effects, in my case, the prog effects were too much for me. Other than that, it certainly increased libido - big time! I'd really like to have continued with it as I felt good on it, but just couldn't function with the brain fog and tiredness. That's not to say that will happen to you, it might be the perfect fit and it's so easy, 1 tab daily, done. It's also hailed by some in the medical profession as the perfect hrt as it's relatively low risk in terms of the usual cancer risks with conventional hrt.
Go at it with an open mind, and like my pharmacist said, don't read all the side effects or you'll start looking for them. Wise words.
All the best and let the ladies know how it's going for you.
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Just found this old thread - I posted somewhere else 3 or 4 days ago about Tibolone but can't find it so hope I can continue on here?
Started on Tibolone today and after reading all the negative points, I'm willing my body to agree with Tibolone (but will try not be alarmed if it doesn't). I know there are ladies on here who will be able to answer my queries cos they've been through all this, and it's not a case of "trial and error" as my lovely, but oh so young lady GP is advising me right now!
Padine xx
Padine it was this thread "Which HRT increases libido" that you posted on:
https://www.menopausematters.co.uk/forum/index.php/topic,45745.15.html
(By the way if you want to find out what you or someone else posted you just go to the menu or look for the small blue tabs and where it says "profile" click on that and if it's yours - then click on show posts and all your posts come up. If you remember it was someone else, then find a post they've made or do a search for them and then click on their profile. Provided they are not too prolific ::) you should be able to find their post if it was recent!)
Hope you do well on the Tibolone....
Hurdity x
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Thanks for that info Hurdity.
I will let you know how Tibolone works for me - it's all such a minefield of ifs and buts and hopefuls, who would be a lady?
Padine xx
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Hi Padine - there's a lady called Sooze who lasted longer than most on tib, might be worth looking at her posts on her Tib journey.
Good luck.
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Did anyone experience any dizziness on this HRT?
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Tracey E - it didn't make me dizzy but I know some ladies on the Tibolone thread reported dizziness. Have you found that thread? It's quite old but lots of info from the ladies taking it.
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who would be a lady?
Padine xx
...fortunately I'm no lady - nowhere near sophisticated enough ;D
Hurdity x
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Hi Padine,
I've been on Tibolone for approx 2 years and it is by far the best HRT I've had, there are no negatives at all. I hope it works for you.