Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Anjia on May 03, 2017, 02:37:01 PM
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It looks like I will have to go private to get testosterone I am so angry I have seen two doctors who both refused when asked why I wanted it I said low libido and well being anyway they said no I dont need it the estrogen patch should be enough Im so fed up.
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Yup. Had this spiel myself. I can see me going to Prof. Studd just to be able to try it. Never have had energy on E only so I'm keen if I can get my blinkin levels up - I'm taking it very slow, so it could be some time.....
In surgical meno we truly are deficient -we've lost 50% of our ability to produce testosterone, for heaven's sake! There should be no ifs or buts if a woman's E levels are sufficient and we want to try it. I'm sickened by it all! :-\
I'm guessing this is why you tried Tibolone, just like me. It didn't pan out for me, you or Joesmum who are all in surgical meno. so that goes to prove that its just not sufficient for us.
xxxx
P.S. I had a private prescription from Prof. Studd last year but I let it expire expecting I would get it via the NHS. How dumb am I? :'(
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Hi Anjia
Are you able to get a referral to a menopause specialists on NHS? Even so there is a mixed approach from gynaes about testosterone - with some refusing to prescribe it off licence. It is really appalling that the main product available for women - the Intrinsa patch - was withdrawn for commercial reasons. Surely now and particularly since the NICE Guidelines, there is a case to produce them again? I wonder if anything is in the pipeline? Tempest - perhaps you can ask Prof Lumsden when you see her if she knows (because surely top gyanes in UK would know if it is going to be re-launched here or something similar?).
Hurdity x
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This is exactly my experience. Well, not quite: I asked for it twice at menopause clinic and was told it was pointless because I still had ovaries (even though they're pretty dysfunctional by now). I was refused twice. Then I asked my (lovely) GP (lovely but had to look up micronised progesterone when I first asked for it) to prescribe it, quoting the NICE guidelines at her (which says it can be prescribed off-label at GP discretion), and she said it wasn't in her remit and had to write a letter to a psychosexual clinic for advice. As I'm having a terrible time with depression and anxiety and panic -- losing about six days a month to it -- I decided not to wait for that but to go privately, was prescribed testosterone with no qualms and am now taking it. Too soon to tell. Also learned I was taking too much progesterone and not enough oestrogen, even though menopause clinic had discharged because I was apparently doing fine. Doing fine apparently means not having vasomotor symptoms. Never mind debilitating depression and total lack of libido....Anyway, onwards! Good luck.
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Oh yes! I had the 'doing fine' spiel too if vasomotor symptoms are controlled (not that mine were - night sweats remained - I was then told practically that i'd 'failed to respond' to treatment and was told that I should use 200mg ONLY of Utrogestan instead NIGHTLY, and to keep increasing it)! I was even told that my libido should return if I was sleeping better - I have no ovaries, for God's sake!
Was I supposed to conjure up libido from thin air?! What about my on going complaints of low mood, utter exhaustion, muscle pains etc? I drove myself bonkers thinking somehow I should be able to fix it all myself and that I was nuts! This is why I've chosen to go private. The empathetic and tailored approach I've received after my first consultation with Dr. Newson couldn't have been more different!
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Tempest will you remember to send me PM with details of Newson?
:thankyou:
DaisyB xx
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It is truly frustrating. Men can get their little blue pills (viagra) on the NHS, with just a nod and a wink - metaphorically speaking - but we have to beg, jump through hoops and end up paying through the nose privately.
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Hi Daisy!
I've just PM'd you.
Hugs! xxxxx
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Too true, Blakeygray!
Without revealing too much, I'm in talks with an influential person in the field of menopause issues as to whether this is in fact a legal human rights issue, especially for oopherectomised women.
If a man were castrated (oopherectomy is after all, female castration) or suffered total loss of hormone function through disease, he would certainly be given prompt and appropriate treatment to replace hormones to ensure health and quality of life unless contraindicated.
Too many women are expected to 'just get on with it' in misery. This is clearly from my view not only barbaric, but may be prejudicial from a legal perspective.
Women are still being treated unfairly and in an inferior fashion to men, and this is an abomination in the age in which we live.
xxxxx
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I agree it's an abomination - where are all the research trials working out doses and products etc, long term safety etc so that the right products for women can be made available, and licensed at the right doses? After all we are living so long post-menopause now! I would be so interested to go to one of these conferences and find out the latest on what's happening - I think the BMS has a session this year on androgens in women (when I looked at few weeks ago - might just be wishful thinking!)
Hurdity x
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Good question. Here's another, why are so many gps still ignoring NICE guidelines.
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Yup. Had this spiel myself. I can see me going to Prof. Studd just to be able to try it. Never have had energy on E only so I'm keen if I can get my blinkin levels up - I'm taking it very slow, so it could be some time.....
In surgical meno we truly are deficient -we've lost 50% of our ability to produce testosterone, for heaven's sake! There should be no ifs or buts if a woman's E levels are sufficient and we want to try it. I'm sickened by it all! :-\
I'm guessing this is why you tried Tibolone, just like me. It didn't pan out for me, you or Joesmum who are all in surgical meno. so that goes to prove that its just not sufficient for us.
xxxx
P.S. I had a private prescription from Prof. Studd last year but I let it expire expecting I would get it via the NHS. How dumb am I? :'(
Hi hope you don't mind me jumping in here but in a similar situation, 2 years post hysterectomy and bso, struggled on every type of oestrogen only and a trial of Tibolone...finally getting testosterone on Monday on NHS. Recently moved to new local authority and gp....to say they've been difficult and added to my stress is an understatement. Luckily I had already been referred to menopause clinic, 100 miles away but they seem to be really good and are giving me testosterone. If this doesn't work, I think I will be going private which we shouldn't have to!
Anyway just wanted to say that you can be asked to be referred to one of these clinics on nhs if gp is difficult and won't work with you on options. Mine is in Birmingham, pm me of you want more info x
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And here's ANOTHER question - why are so many top Consultant's ignoring the NICE guidelines too? :o
The biggest advocate for T in women is Nick Panay. He believes every woman in menopause should be allowed to try testosterone unless obviously contraindicated. He believes it's safe, has been used in women since the 1930's (would you believe) and has many benefits and few risks.
Some of these are improving insulin resistance, helping to maintain bone mass and muscle, efficient fat burning, improved mood and concentration and of course libido.
We have MORE circulating androgens than estradiol pre menopause, so it's a nonsense that this is an exclusively male hormone that will make us all grow beards.
The ONLY problems I have ever come across after doing my own research is women who have received implants that achieved very high levels. I don't believe personally that T implants are a very good idea at all, as if excess is achieved then it takes a good while for T to leave the body and unwanted side effects may not be reversible.
I know Nick Panay was dismayed when the Intrinsia patch was withdrawn - as far as I can ascertain, it was a cost issue.
My bet is that if it were more widely prescribed, we would be in a better position to negotiate with the supplier to obtain this product at a favourable cost. After all, drug company's are in it to make a profit, and dismal demand in the UK is not going to make for a viable market for them. xxxxx
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It is scandalous that solely commercial considerations are governing the availability of pharmaceutical products that have been licensed previously - not only Intrinsa patches, but products like Orthogynest pessaries ( for VA) and Utrogestan 200 mg capsules ( for HRT). Some of it is baffling. I think Panay is or has been doing research recently into T replacement - I read about rectruitment for trials maybe a couple of years ago?
Hurdity x
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Even under a specialist it's only implants that are licenced. I find it hard to believe that a cream or patch wouldn't be licenced. The consultant said the cream is too hard to dose and too easy to get a bit too much. I'd be reluctant to try the implant as I don't know how I'd react, or if it would affect my hair, but feel I need some testosterone.
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My NHS GP said she wasn't allowed to prescribe me testosterone, so I asked her if she could refer me to a private gyny who would. She sent me to see Dr Whitcroft in Guildford. She was amazing. She had already read my notes from my GP, knew all about me and told me exactly what I needed. I'm progesterone intolerent, which makes me depressed, angry & fat, when I take it, but because I'm still menstruating I have to have it! So she told me to use Utrogestan 200mg vaginally, 4 times a year for 10 days. She increased my estrogen to 1 x 1mg tablet progynova + 2 pumps of estrogen gel in the morning & the same at night. She also told me to use 2 x sachets of Sandrena every afternoon, as she said that my estrogen levels needed to be maintained throughout the day. She prescribed me Tostran gel to apply 1 pump every morning which certainly increased my libido & energy levels, but my hair became quite thin. I spoke to Dr Whitcroft about this and she said that it should all become right once my estrogen levels increased, but if I preferred, I could decrease it to 1/2 a pump. Which I have & I still have all the benefits of it, so all's well. She wrote a letter to my GP detailing what she had prescribed for me and I now have it all, including Tostran, on repeat prescription. I don't think we should have to go to the expense of paying to see a private consultant, but I wish I'd have seen her years ago 😀
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Hello ladies.
I am also dismayed at the lack of interest in helping those of us experiencing a problematic menopause. It is adding insult to injury to also have products discontinued and guidelines ignored.
In addition of course there is a lot of ignorance out there, an elderly male GP once told me that a brisk walk at dusk would ensure a good nights sleep regardless of any sweating, palpitations etc! Some men just don't get it and are not particularly interested either.
All this reminds me of something I read years ago concerning women's health and how it was viewed. During the war a senior guy who was working in a reserved occupation and an expert in his field was found to be leaving work early every day to go home to his wife and young child. This was a huge problem for the industry so government officials asked him to explain himself. Apparently his wife had endured a difficult labour and was so injured that she struggled to look after their young daughter and that's why she needed his help. She had seen her doctor many times but was told there was nothing they could do. When the officials heard this they arranged for the woman to be seen by a specialist who then successfully treated her meaning her husband could continue his vital work. The only reason all this effort was made for one young mother was because her plight was impacting on the war effort! She had gone from insignificant to important as far as the men were concerned and that is why she was fixed. Makes you wonder how much has changed eh ladies!
Wishing you all well.
K.
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Hi Dmt
Wow that is a huge amount of oestrogen - higher than most women are prescribed even in surgical menopause! Also by comparison not very much progesterone although I imagine at that dose of oestrogen your cycle may well be shut down? Even so I would be surprised if you did not experience some breakthrough bleeding. Also that is quite a high dose of testosterone.....
However I am pleased that you are getting this on repeat prescription on NHS but would be interested to hear how you get on with it?
Incidentally you need progesterone, not because you are still menstruating but because you still have a uterus - so you will still need this post-menopause, as long as you continue with the oestrogen.
Good luck with your regime.
Hurdity x
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Tempest, yes, I saw Dr. Newson too. I thought she was great. Confident, kind, optimistic and most importantly, inspiring confidence. As for why GPs ignore NICE guidelines, I honestly think they just don't have time to read them, for a start. But then, when we point them to the appropriate footnote, they should at least consider T gel. Still, I suppose mine did do a referral. But that's another couple of months of waiting for an answer and of feeling shitty and panicky and depressed and not getting work done. I get so angry about the absolute disregard for women's health that permeates EVERYTHING but especially menopause. Lack of science, lack of funding for women's health research, lack of pharmaceutical products, supply difficulties for the products that we are allowed to have (yes, I'm looking at you Novartis). Seeing someone privately does not sit well with my principles, but now I've seen her, I wish I'd done it a year ago. It's so crassly unfair that so many women are struggling and fighting and struggling just to get basic healthcare and to function. Anyway, rant over!
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I had to do a huge amount of research to get the treatment I needed re BHRT from my NHS GP & the cost of £225 to see a private consultant + £150 follow up + private prescription costs. Although all my meds are now being prescribed via the NHS costs of £8.60 per item. This is NOT right! What about women out there suffering, who do not have the incentive to research their symptoms & get the correct BHRT or the finance to seek help privately re testosterone or other meds. My first visit to my GP at the age of 45 now 52), with depression, panic attacks & insomnia, I was given Prozac.....didn't work. Second visit 2 years later, same symptoms, but now hot flushes & bloating, I was given citalopram.....didn't work. I stressed that I was peri menopausal and that I needed hrt. I was given a blood test that confirmed I was NOT menopausal & didn't require HRT! It's taken me 7yrs & lots of research to finally feel relatively 'normal'. Actually, some days I feel great. I plan to contact my local MP (who's a middle aged female) and get something done to help those less fortunate sisters help on the NHS. I have already emailed Sarah vine (journalist daily mail) and also Jenny Murrey (women's hour, radio 4) but have not had a response! Carole Vordaman wrote a piece in the DM re hrt etc, but did not disclose that she is taking bioidentical E,P & T. This makes me sick that all these knowledgeable, wealthy celebs are getting this treatment & not helping those less fortunate to get the same on the NHS. I think we all need to lobby our local MP's to get things changed!
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Some of the "celebs" are helping - Kirsty Wark for example viz recent programmes on menopause on mainstream TV.
Hurdity x
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Yup - my costs have been the same, DMT. It's a total disgrace. There was no way on God's earth I was going down the Utrogestan only route that was suggested to me by my NHS consultant - I'd have ended up in a horrible mess, and without bone or cardiac protection.
This way, I do have the option of adding in a smaller dose of Utogestan if needed if the higher doses of estrogen I need cause too much anxiety or palpitations - and I get to trial testosterone too, but like you I have had to pay to find empathetic, individualised care.
As an aside, I've just also made an appointment for my Husband to see a private GP to enable him to change the ACE inhibitor he's taking as his GP won't change the Ramipril he's taking, even though he has side effects which are very troublesome. There is another drug option available with far fewer side effects, but its not available due to cost........Were not talking pounds here, were talking PENCE. >:(
If it means my Husband can remain fit and healthy and continue in his very active job, then we will access his medication privately. Can't the NHS see that by prescribing effective, appropriate treatment for each patient it actually SAVES money in the long run by people not having to go to their GP with complaints caused by side effects from inappropriate treatments, or by becoming economically inactive if they have to give up work for want of treatment to help manage their condition? >:( xxxxx
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Warning! I am about to vent >:(
I think the majority of us on here have a right to feel angry. With the exception of the few who have excellent GP's and services. In the last 3yrs I have had a gastroscopy twice - MRI scan - ultrasounds - mammograms- biopsies - speech -and language 1:1 for shortness of breath! ( that alone cost more than £500) physios private treatment, Nasoendoscopy twice, private gynae twice in 3 years, and surgery to my throat - for a feeling of being strangled that no one could explain. Surgery was nhs after I'd paid for all tests etc! Finally I contacted Erika Schwartz in USA and had bio identical testosterone progesterone and estrogen prescribed - then they changed the ballgame and the costs suddenly shot up! At that point I'd already paid hundreds of pounds in online consultation fees, prescriptions postage and customs! I had no choice but to stop. That was horrendous!
Recently I've had to take a private GP annual subscription to reduce the more costly one off fees that I was paying every other week! I am not wealthy - and although some of the costs were met by a scheme I'm in - a fair amount has been paid by me.
I detailed my symptoms in earlier posts - but even the private GP back 2/3 yrs ago didn't recognise the signs. After joining the forum i now realise many of those symptoms are experienced by so many of us.
So much money and so much suffering that has all taken its toll. I am out on sick leave since March when I could no longer function 'normally' and actually thought I was going insane.
I'm still not 'sorted' - and although private Gynae was good - I've been left hanging - so to speak.
I will likely have to reach out to dr newson if I can't get it settled.
When I have felt this couldn't get any worse - at times recently it has. Then I read some of your stories and think I'm one of the lucky ones.
The private GP advised me that the hormone tests were unreliable in peri - and that they should be looking for a 'set' of symptoms- nobody recognised mine, like so many others on here.
And even those that were recognised have often reported very poor services that have driven them to the private sector.
And you know what else gets me angry? The celebs come out and tell their stories and hope to inspire other women to seek support and help. Help from where I ask?? Harley st??
Rant over girls - id a bumpy night >:(
DaisyB x
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I finally lost it when I went to see NHS GP with Hubby and was begrudgingly prescribed estrogel at one pump per day ONLY - I told him I was starting low and he replied 'that should be sufficient. How much were you planning on using? The NHS isn't a bottomless pit you know'!
For heaven's sake! 1 pump isn't even the standard dose for someone in natural menopause! >:( >:( >:(
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Tempest put a complaint in with practice manager. You've been through enough. :(
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What a cheek Tempest - also that dose is not sufficient for osteoporosis protection, which is two pumps so he is being irresponsible here if you are under 51/52!
Sorry Anjia I realise that's not about testosterone but it is the same principle of some unhelpful GPs.
Hurdity x
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It's so annoying. My GP didn't want to prescribe utrogestan or estrogel as he just prescribes the same few HRT's.
I have seen in an american study where they prescribed testosterone, progesterone estrogen at just 1mg. I'm wondering about the testosterone as my libido is flatter and either the oestrogel or the utrogestan has blown me up like a balloon. The consultant I have seen just said only the pellets are licenced and does not recommend the gel. Do other consultants prescribe the gel as I would not like to trial something which is there for three to six months in case of side effects. Does the testosterone help with weight? I'm beginning to wonder if estradiol agrees with me.
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I feel sorry for women that can't afford hundreds of pounds to go private and those who have been wrongly prescribed anti depressants.
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I would be careful with testogel if you can get it. When I took it caused more facial & body hair & did nothing for my libido but I was given it by DR Studd who I think prescribed too much. Also testogel can also convert to oestrogen in the body. When I first started HRT my oestrogen was a crazy high level & testosterone was too high. Very difficult to take all these hormones & achieve the right levels
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How much were you using? a small blob a day is the consensus.
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Yes that is what I was using. With the testogel also it is very difficult to get it accurate because primarily it is made for men so they would probably use a whole testogel while obviously women would use a much much smaller amount
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I am prescribed testogel on NHS after seeing a private consultant for low libido. It has honestly changed my life! I use a sachet a week. I have more energy, great hair, great orgasms!!! I am 46
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Woo hoo! Go girl!
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I have been seeing nick Panay and I'm on 175mg Evorel patches and he started me on testosterone 3.5 months ago- I sachets lasts 10 days. I decant it into a syringe and push 0.5ml into my finger and spread it in my lower tummy.
Well all I can say is wow!!! I have had no libido for 9 years and now it's back! 😊 I and stronger, more energy more confidence, skin is amazing, mood more stable and great hair. Don't get me wrong I still have issues with bloody E!! I was on 150 evorel for the first 18 months post op but in the last 3-5 months I've had to up it. I get regular blood test just as a guide and I feel my best with E between 420-650 if it goes to high (usually caused by diet or outside factors) I itch like crazy everywhere. My T levels just can back as 1.2 after being non-detectable 4 months ago.
I'm really lucky that my gp's and consultant were amazing although he wait for my first appointment with nick was 13 months!
X
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I have been seeing nick Panay and I'm on 175mg Evorel patches and he started me on testosterone 3.5 months ago- I sachets lasts 10 days. I decant it into a syringe and push 0.5ml into my finger and spread it in my lower tummy.
Thanks for this tip. My consultant has just prescribed Testogel, his idea not mine, 1 sachet is to last 5 days then 2 days off. I'll get myself a syringe. He said to rub it onto the outside top of my leg and alternate each day.