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Aching joints and fatigue unsure if tibolone to blame

Posted , 7 users are following.

susan89885
susan89885

I have bad menopause symptoms and been on tibolone for 7months. My symptoms have improved but feel so tired and my body aches. If the tibolone is to blame I don't know what else I can try. I am 59 and so fed up as I need something for the menopause problems. I have been on vagifem and investing and get worried every time I have to go on something else because of side effects.

0 likes, 14 replies

14 Replies

  • janver12
    janver12 susan89885

    Posted

    Hi Susan.. I totally agree with you over tiredness and body aches!! I myself have been on Livial for 7months and feel tired all the time and feel like I am pushing myself all the time to actually do something.! I feel lethargic and have joint aches and stiffness. Iam nearly 50. In a sense I feel ok for being on it but those two things are the main issues. Lack of motivation. Iam also on oestrogen 3pumps a day along with Livial .I had subtotal hysterectomy 3yrs ago. I had tried a few different hrt but they didn't suit. Like yourself you want to feel better and not have to keep on going through the side effects. I excersise and walk more( mostly in the last 4weeks)😬 And found my joints have eased a bit  but have to push myself.I also put weight on with Livial most probably because I can't motivate myself.Not a lot to lose but it is coming off with dieting and excersising..It is hard and do wonder how much the Livial (tibilone) contributes.I must admit I mentally feel better and not as anxious as I was before i was prescribed it.That is a plus side for me.I never realised how much all of this is trial and error!! To me forcing myself to do excersise ,walking, is helping my joints but it's an effort. Good luck.

  • annette06637
    annette06637 susan89885

    Posted

    Hi Susan

    I tried Tibolone with no success. The aches and pains were so bad it kept me awake at night. I also had abdominal cramping. I'm 61 and decided her wasn't worth it. I felt I was allergic to it and am unwilling to go through it again. I am treating my anxiety and mood problems in other ways. I feel so much better since I stopped taking it!! Maybe hrt isn't for everyone. Good luck but maybe look around for some non hrt options as well. 

  • sandra11356
    sandra11356 susan89885

    Posted

    I started tibolone when I was 52 and beginning menopause. Went onto other HRT and now back on tibolone for last 4 years and I am now 65 with luckily no ill effects. What I would strongly recommend is that you ask your GP for vitamin b12 blood tests. Google the effects of b12 deficiency, you will be surprised. If your levels are below 550 (they should be 550 to 1000) then supplements and/or injections to raise your levels would be beneficial. All those symptoms sound like b12 deficiency to me. Good luck.
    • annette06637
      annette06637 sandra11356

      Posted

      Hi Sandra very interesting about B12! I had my levels checked and it is 593. My GP put me on it then told me to stop because of headaches and sleeplessness. I am taking Folinic Acid and MTHF as well at the moment. I do feel much much better since I stopped Livial. I have had to change GPs so it will be interesting what the next one has to say about it all! Thanks for the response I think people do need to consider their Vitamin B and D levels. 
  • janver12
    janver12 susan89885

    Posted

    Hi Sandra. Just looked up the side effects of lack of vitamin b12.Very interesting as pins and needles are one of the symptoms along with all the others. That has never been mentioned at my review or picked upon..
    • sandra11356
      sandra11356 janver12

      Posted

      Absolutely, and depression is also a side effect as is forgetfulness. I live in Spain and they are really on it here as it's also a precursor to dementia and the like. it's such a simple blood test and if you can't overdose as you pee out what you don't need. A great book.....'Could it be B12, an epidemic of misdiagnosis' scary stuff.

    • janver12
      janver12 sandra11356

      Posted

      Self help and forums I find really are a must. Drs just don't seem to pick up on things, too happy in just exchanging one tablet for another. My experience. Thanks.

    • jenny73393
      jenny73393 sandra11356

      Posted

      Hi Sandra, just curious to know whether Livial is available over the counter in Spain or requires a script. Will be visiting for few months so checking availability. Also what does it cost in Spain. 

      Regrads Jenny

  • susan89885
    susan89885

    Posted

    For "investing" I meant Ovestin!   Thanks for replies and will try for a blood test and B12 supplements.  I thought I may try the Tibolone every alternate day for a while instead of daily and see what happens.  As it's been a year of medical intervention trying different things, and worrying about new side effects, it's been so stressful.  At least with the Tibolone I haven't put on weight,  and as it's 3 months till I have a gynaecology appointment I may try and stick it out till then with the suggestions given here.  I can ring my GP but I don't want to be taken off the Tibolone until I understand what else I can have for my symptoms. 

  • liauq
    liauq susan89885

    Posted

    Seen this discussion too late.Just to say that I had some really nasty episodes when I was taking tibolone, many tying into vitamin b12 deficiency, so I stopped.Went onto oestrogel/utrogestan and symptoms there but milder.

    Apparently hurt can lack vitamin b12 out: why does no-one warn you?

    I suspect many women can't take tibolone and just stop and it goes unreported.

    • annette06637
      annette06637 liauq

      Posted

      Yes I had to stop taking it. I've changed GPs since as he didn't really believe me when I said it gave me serious side effects. D, B vitamins and Folic Acid are really important but not always mentioned. 

  • janver12
    janver12 susan89885

    Posted

    Hi Susan.Have you improved any since this post?? I started on vitamin B complex  and folic acid after reading all this.I don't get pins and needles or aching joints (still get ones you know you get when you haven't done much) like I did a few months ago.Whether its co incidence Iam not sure but something lifted. I have taken Menopace for 3years , may not have been enough,I don't know, but whatever body doesn't need it will pee out anyway. 

    • susan89885
      susan89885 janver12

      Posted

      Thanks for all the replies.   I have been taking a B12 supplement after reading these posts and I do feel better regarding aching joints.   I still have back pain but that is something I had before Tibolone.   I don't really want to stop taking it as I have not put on weight and it has improved my libido.  Think I may add folic acid too. As you say, don't know if it is coincidence but I do feel an impovement.  

  • cec87474
    cec87474 susan89885

    Posted

    well on tibolone since late march similar symptoms so have ditched it and been taking B12 , magnesium and Men8 biocueticals brand, not bloated, gp wanted me to take diuretic and feeling much better although still early days coming off the xyvion aka tibolone. More exercise which is just walking too is helping

     

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