Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Annie0710 on September 14, 2016, 11:49:38 AM
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I don't know whether I'm coming or going now :-(
Brief history:
Prior to June 2016 - oestrogen hrt since 1999
June : new meno nurse calls me in for review, I tell her I still feel rubbish and getting nowhere, she said she's pretty sure I'll be low on testosterone after all these years and arranges for a testosterone test
July : turn up for my test, she said gps had a meeting and I must wait til September, reluctantly I accept
Today (September) : turn up for my blood test to be told gps won't agree to testosterone therapy as there is no licensed product for women. I explained they can prescribe the men's one and use a tenth each day and that the only reason I'm aware there's nothing for women is because it wasn't cost effective and that NICE guidelines say to consider testosterone for certain post meno women. She said it has to be female one for docs to agree and said she'd ask about Tiboline . I said I don't know anything about it and it's obvious I've had the runaround all these months and probably my only solution is private. She did the blood test anyway
My problem is I know nothing about Tiboline only that's it tablet and she said I should be ok with progesterone as I produced it for years after hysterectomy and before peri started (funny because previous appts she said I must NEVER touch progesterone again)
Do I try this Tiboline or save up and go private? I just want to cry, I feel like no one there is caring and just making decisions for me without listening to me
Please help xxx
Annie xx
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She is correct though - testosterone in the UK is difficult for ladies to get hold of. Many years ago my GP told me that it would make my voice drop ::).
Have a 'search' for Tiboline on here ? make notes. Give the Practice Nurse and ring and be blunt, ask what she would do. You can then check why progesterone was a no-no until now.
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Only high quantities would change your voice from what I've read
There's very little on Tibolone on here
She's stuck, she can't prescribe so has to ask gps in meeting for permission to these things so her hands are tied
I'm googling about Tiboline, I guess like everything there's good and bad reviews and some ladies on a hysterectomy forum are on it
It seems (from my understanding) it's a steroid where your body converts it to oestrogen/progesterone/testosterone
I hate not being heard at the surgery
Annie x
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Dear CLKD I am SO SORRY that this is your experience. I felt completely doomed knowing that I could never afford to go private but knowing that there was something out there which just might be the answer in terms of boosting my low mood and libido. It took me being a suicidal wreck for my male GP (the lady one refused) to look in his BNF and work out how to give me Testosterone (and I am worrying that other doctors at the practice might challenge him on this since it is unlicensed for women.) I haven't started it yet as am waiting for the order to come in.
Just a thought (this is what I was going to do if all else failed) could you email one of private gynaecologists, explain that you are not in a position to pay (and really why should you?!) and tell them that this is the response you have had from your practice and seek their advice. That way they might provide you with some documentation you can take to your Meno nurse, or even possibly see you for free? (I spoke to one of the private gynae's secretaries some time ago and she said that sometimes - though rarely - they will help in this way.) Worth a shot. Really feel for you and hope you get it sorted. Please keep us posted.
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My private gyne also refused to perscribe it off license for women but was happy for me to purchase androfem which is testosterone specifically formulated for women .
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Annie0710 - I'd definitely give Tibolone a go first - could well do the trick. If you try this for 3-6 months and things are no better then go privately.
You say you feel rubbish - in what way? Have you had a good look at the your diet and exercise and lifestyle - sometimes some tweaking can make a big difference e.g. Vitamin D, Omega 3 oils - I did this recently - I was under the impression that my diet was good but when I really broke it down I was deficient in certain minerals and vitamins. Also, do you do lots of brisk walking? DG x
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Annie0710 - I'd definitely give Tibolone a go first - could well do the trick. If you try this for 3-6 months and things are no better then go privately.
You say you feel rubbish - in what way? Have you had a good look at the your diet and exercise and lifestyle - sometimes some tweaking can make a big difference e.g. Vitamin D, Omega 3 oils - I did this recently - I was under the impression that my diet was good but when I really broke it down I was deficient in certain minerals and vitamins. Also, do you do lots of brisk walking? DG x
No DG, I don't do much exercise but I do make sure I'm getting all my vitamins etc. I'm lifeless, so badly lack energy and can't remember the last time I had even a smidgen of a sexy thought and when we do I'm sure for days after (am on Vagifem and Sylk) and have the weird sensations on bladder and bowel, I feel like I'm sitting in something and any movement can trigger the feeling of needing to pee/poo but if I move again the feeling can sometimes (not always) go again so I never know where I'm at whether I need the loo or not
I'm just tired of all this, she said today its iffy they will even agree to Tibolone as its contains progesterone and I've had a hysterectomy , they just don't budge from their outdated thoughts and certainly don't think about the well being of their patients
I work long hours Monday's and Tuesday's and babysit my grandchildren Wednesday's and Thursday's and all that alone leaves me so tired, my joints ache, my back has never recovered from the last herniated disc last October and due to a birth defect my mobility is somewhat compromised so walking is difficult for me (I can do short trips)
But to top it off I had a scan booked for 4.30 today by a company that is private but takes Nhs referrals, did all my filling up with 2 pints, turned up and the surgery is closed for training, I spoke to the pharmacist who said they'd been trying to tell people and I've just looked at my phone and I've had nothing from them
DeDiva - how sad the lengths we reach to get help :-(
Dazned - did you source your Androfem yourself or was it prescribed ?
I just want today over with now
Annie x
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IMO GP's are very disinterested in the detail of HRT and getting the doses/treatment right.
I paid privately to see a female Gyny, in the first appointment she offered me Testosterone after I had completed 3 months of sequi HRT. She took lack of sex drive to be very important and impacting on your quality of life. (I haven't got my T yet as I need an hysteroscopy and biopsy first as now have irregular bleeding.
So yes - I would save yourself the hassle and if possible go private. I would hasten to add that you shouldn't have to do this, but unfortunately, many of us are finding GP's assume "1 size fits all" and if treatment doesn't work at first, there's no alternative options, it's AD's and out of the door!
My Gyny was also a Member of the British Menopause Society.
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I sourced it myself from Lawley pharmacy ,there in Australia,after my gyne had looked into it for me. I do know for a fact there's a chemist in West Hampstead who carry it but you would need a prescription for it. The price of private prescription and cost of Androfem were about the same. I used a whole tube about 4months but have to say I never saw any positive results so didnt pursue it anymore.
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Also - NHS GPs are NOT allowed to give a private prescription. I know a Surgery that has recently been wrapped over the knuckles!!!
Private prescriptions can only be sourced from a private practice.
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I'm sure I've read on here that private consultants can/do prescribe for your GP to sign on Nhs ?
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IMO GP's are very disinterested in the detail of HRT and getting the doses/treatment right.
I paid privately to see a female Gyny, in the first appointment she offered me Testosterone after I had completed 3 months of sequi HRT. She took lack of sex drive to be very important and impacting on your quality of life. (I haven't got my T yet as I need an hysteroscopy and biopsy first as now have irregular bleeding.
So yes - I would save yourself the hassle and if possible go private. I would hasten to add that you shouldn't have to do this, but unfortunately, many of us are finding GP's assume "1 size fits all" and if treatment doesn't work at first, there's no alternative options, it's AD's and out of the door!
My Gyny was also a Member of the British Menopause Society.
And did it help ? I mean in ALL areas not just libido
Annie x
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I'm also worried because of existing hair thinning, I've been reading what I can and I haven't seen any positives for hair increase on Tibolone whereas Testosterone can help there too
Annie X
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Hi Annie what a rough time you're having!
Just to let you know that I use testogel but had to go private for the first script. He wrote to my gp and now it's on repeat. One box lasts 6 months so it lasts a while, even if you have to pay a private script price. Mine was £48.
I feel great - sex life is back with a bang ;D plus my hair and skin are lovely too.
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Hi Annie what a rough time you're having!
Just to let you know that I use testogel but had to go private for the first script. He wrote to my gp and now it's on repeat. One box lasts 6 months so it lasts a while, even if you have to pay a private script price. Mine was £48.
I feel great - sex life is back with a bang ;D plus my hair and skin are lovely too.
Thank you Nina for replying!
It's so good to hear these positives about testosterone and I was sure I'd read that private dr's were sometimes sending prescriptions to NHS gps but even if they don't that's affordable (even after the consult has stung the purse strings)
Thank you
Annie x
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So sorry to hear about this Annie0710 - after all the time you have been waiting - and to get such inconsistent response as well. No offence to nurses but really I would ditch the nurse! Of course she can't prescribe testosterone and fancy saying that about Tibolone! It isn't like normal HRT - as you have read - so the progestogenic part of it, although is unnecessary for you (as you've had hysterectomy) won't actually do you any harm. Of course they could prescribe it! In fact probably better to use it with a hysterectomy because one of the side effects is endometrial thickening - one reason I wouldn't consider it for libido originally. That being said I wouldn't take it anyway.
You shouldn't really need to have testosterone tested anyway - this was only a bonus because someone in your practice offered to do it.
As you know the NICE Guidelines do make provision for you to be prescribed it (T) off licence for low libido as Dediva Ann just has been. Is there anyone in the practice you can go to who will be sympathetic? I must admit this is one part of HRT that if you can't get it on NHS then as Nina says you might have to go privately initially - as I did. My box lasted over a year (16 months) - I've only just finished it! A pea sized blob doesn't use up much but makes a huge difference! My objection is when NHS docs refuse to prescribe stuff that's licensed ie estradiol patches/gel and progesterone women consequently feeling they have to go to private docs. It will be a long time before T prescriptions become commonplace and who knows when a T product for women will be produced again.
You need to confront your GP with the NICE Guidelines if you can - or one in the practice that might be sympathetic. Then if none will consider it then see if you can change practice or ask to be referred to a meno clinic. Those whose meno clinics have refused in the past may well reconsider now that the NICE Guidelines are out? You really should not have to save up to pay for something that you may well need for your health.
Also do try to do some exercise - just a little bit each day - set yourself some goals - it really will make you feel better even without testosterone. Trying that though should make a world of difference if you can manage to get hold of some. I presume you've had thyroid etc tested too?
Hurdity x
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Oh, Annie!!! This is so awful for you, truly!! I know you were pinning your hopes that they would help you.
WHY do we have to fight and beg to receive decent treatment??? I am telling you, if you don't have anxiety and depression already with what Menopause throws at us, then you surely will have after having to be belittled and dismissed like we are.
No wonder lots of us are getting so desperate that we're being forced to use the private sector!!
You CAN always phone the 'Certain Consultant's' secretary who I know is very sympathetic and ask if there is a way you can secure a telephone consultation. I know he will consider this in some cases if you are unable to attend in person. I also found that a private prescription cost for 36 sachets of Testim is only £42 (with pharmacy discount) where I am, which would last a considerable amount of time as you would only be using 1/8th of a sachet daily (as per 'a certain Consultant's' regime).
I am sending you biggest, biggest hugs. xxxxxxx
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So sorry to hear about this Annie0710 - after all the time you have been waiting - and to get such inconsistent response as well. No offence to nurses but really I would ditch the nurse! Of course she can't prescribe testosterone and fancy saying that about Tibolone! It isn't like normal HRT - as you have read - so the progestogenic part of it, although is unnecessary for you (as you've had hysterectomy) won't actually do you any harm. Of course they could prescribe it! In fact probably better to use it with a hysterectomy because one of the side effects is endometrial thickening - one reason I wouldn't consider it for libido originally. That being said I wouldn't take it anyway.
You shouldn't really need to have testosterone tested anyway - this was only a bonus because someone in your practice offered to do it.
As you know the NICE Guidelines do make provision for you to be prescribed it (T) off licence for low libido as Dediva Ann just has been. Is there anyone in the practice you can go to who will be sympathetic? I must admit this is one part of HRT that if you can't get it on NHS then as Nina says you might have to go privately initially - as I did. My box lasted over a year (16 months) - I've only just finished it! A pea sized blob doesn't use up much but makes a huge difference! My objection is when NHS docs refuse to prescribe stuff that's licensed ie estradiol patches/gel and progesterone women consequently feeling they have to go to private docs. It will be a long time before T prescriptions become commonplace and who knows when a T product for women will be produced again.
You need to confront your GP with the NICE Guidelines if you can - or one in the practice that might be sympathetic. Then if none will consider it then see if you can change practice or ask to be referred to a meno clinic. Those whose meno clinics have refused in the past may well reconsider now that the NICE Guidelines are out? You really should not have to save up to pay for something that you may well need for your health.
Also do try to do some exercise - just a little bit each day - set yourself some goals - it really will make you feel better even without testosterone. Trying that though should make a world of difference if you can manage to get hold of some. I presume you've had thyroid etc tested too?
Hurdity x
Thankyou Hurdity, you always take the time to really explain things in depth, don't think it ever goes unnoticed :-)
I go on holiday on Monday but I did see a nice female GP a couple of weeks ago who reinstated my Vagifem and wanted bloods to rule out sinister things plus referred me for a scan
Everything else has been ruled out, thyroid etc so am only left with these symptoms are caused by hormones (or lack of)
We get away camping a lot and walk lots , well we have this year as I found by chance some sandals that I can walk in (even flat shoes after a certain distance leave me with horrible blisters) this leaves me quite weak and very fatigued and next day and I seem to be seized up and even more immobile
I've not heard of a meno clinic here locally (or reasonably local), one GP referred me to a gynae who just said there's nothing more hrt wise he can do for me, I was only in there minutes, it seemed I'd only got the appt as courtesy not because someone wants to help
I've been an optimist through this but my hopes are being dashed time and time again and I'm losing hope with the NHS helping me
Hurdity why would you not take Tibolone even if it didn't cause thickening ? I need to put an argument to them when I get chance after my holiday
Annie x
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Oh, Annie!!! This is so awful for you, truly!! I know you were pinning your hopes that they would help you.
WHY do we have to fight and beg to receive decent treatment??? I am telling you, if you don't have anxiety and depression already with what Menopause throws at us, then you surely will have after having to be belittled and dismissed like we are.
No wonder lots of us are getting so desperate that we're being forced to use the private sector!!
You CAN always phone the 'Certain Consultant's' secretary who I know is very sympathetic and ask if there is a way you can secure a telephone consultation. I know he will consider this in some cases if you are unable to attend in person. I also found that a private prescription cost for 36 sachets of Testim is only £42 (with pharmacy discount) where I am, which would last a considerable amount of time as you would only be using 1/8th of a sachet daily (as per 'a certain Consultant's' regime).
I am sending you biggest, biggest hugs. xxxxxxx
Aw Tempest bless you! Thankyou for replying
Does anyone have any idea how much a private telephone consult costs ?
I agreed to for to still test me today as I thought worse case scenario I still have a test result should I need to go elsewhere
I've been so tearful today, I'm trying to keep strong to keep my fight going but it's draining me
Hope you're keeping well (well as well as can be expected)
Big hugs
Annie xx