Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: AndieKC on March 01, 2022, 08:58:45 AM
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Hi Ladies,
I was wondering if anyone might be able to help with this… Been on HRT for a few years (4 pumps estrogel + mirena coil) and decided to try testosterone as i still had some symptoms so GP and i thought it would be worth a try. For the past 6 weeks i have been on Testogel (1 sachet for 10 days) but GP has just texted me that my ‘free testosterone is climbing and i need to stop testogel as per the Menopause Society guidance’.
Their computer system & data protection won’t let me have the numbers so i could see exactly what the numbers are so i don't know the exact levels - the GP will call me next week to explain. But is this normal? The weird thing is that i don't think the addition of testosterone had any effect on me - i was hoping for it to give me the oomph back, have more energy and help me with losing the body fat i gained in the early years of menopause etc. Also sex drive non-existent since menopause started 6 years ago, so that was the main reason for testosterone but nothing changed - however everyone says it can take 3 months or even longer for this to take effect.
Feeling demoralised… i know there are worse problems in life and i should be grateful . Any ideas what to do next? I am 50 years old now, am i going to feel like this for the rest of my life? Low on energy and ‘day dreaming’ of feeling like it would be nice to feel a little frisky but instead just nothing? I am not depressed, am also working with a counsellor on different issues, but was hoping to fix this no libido thing. Poor husband is very understanding but it seems to me that at 50 i should at least sometime feel like wanting to have sex but because of my non-existent sex drive it is painful so we have sex once a year and it is not a pleasant experience for me. By the way, dear old vagina is moist like hell due to estrogen, it’s just the ‘feeling’ thats missing. It is as if the connection between the brain and vagina is lost - the brain is thinking all the right things, but none of it travels down there where it used to switch things on and cause this marvellous feeling of desire. And it’s not the husband’s fault i promise, he is lovely and all that. Trying to create the desire/libido in my head doesn’t work either - fantasies, raunchy passages in books etc, nothing… The head works as it used to but nothing travels down there. So really was hoping for testogel to fix this as i am planning to live to 90s :sigh:
Sorry for my ramble, and thank you for reading. Any thoughts are welcome xx
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Morning.
MayB put 'testogel' into the search box to see what pops up? Make notes ;-)
I am sure that others will be along with advice.
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I didn’t think the nhs tested free testosterone just the total. I’d question him further about this because I know with men their total testosterone is pretty useless as a marker and it’s only the free that is really relevant. They get the same problem with GP’s telling them their total testosterone is fine.
It’s pretty outrageous that you can’t access your own test results but perhaps they’ll print them off for you.
x
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I would never consider accessing my GP records :-\
I thought that to prescribe testosterone a GP had to be advised by a menopause clinic :-\
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Hi
A GP can prescribe testosterone for PCOD and low libido in women but are loathe to do so as it’s off license. And even less likely to for menopause although they can (my bestie is a GP).
The NHS do test for free testosterone - I’ve just had mine done. It’s worked out from total testosterone and SBGH - I think!
I’ve been on testosterone for two years and have just stopped it. Not sure it helped with anything but was scared to stop - so far no difference noted x
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It’s SHBG which stands for sex hormone binding globulin.
I’m amazed the GP’s do it now as even my specialist didn’t do it recently!
This might help
https://balancemyhormones.co.uk/free-testosterone-calculator/
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Thank you all for your replies. To answer some of the questions you have asked - my GP is female, young and actually been on the course with Dr Newson, and consults with her where needed. She was fully supportive of HRT and even testosterone, so i guess it must be the numbers that force her hand to make me stop testosterone, otherwise she believes it takes 3- 6 months before judgment can be made whether it worked or not.
I will be requesting my results in writing/email or some kind of access, hopefully i can get these.
What caught my attention on the thread is that some women were saying that 1/10th of testogel sachet can be too low a dose for some women. Anyone has experienced this?
Many thanks to you all xx
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My GP prescribed Testogel without actually telling me, I found out when the prescription was collected from Boots.
AndieKC, a sachet lasts me about 5 days, I increased it about a month ago from a petit pois to garden pea sized blob. My prescription sticker still says ‘petit pois pea sized blob!’ I don’t do tests, I go on symptoms, I feel good.
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Hi Victoria,
Are we talking about the same sachets - testogel? Because I was also using a frozen pea size amount but that way the sachet lasted exactly 10 days as prescribed. I have many sachets left from the prescription but don’t want to keep using against doctors advice. Although it does seem premature to terminate it after only 6 weeks, do you agree? I was thinking about using a higher dose to see if that improves libido but now doc is stopping it altogether. I really want to get the numbers from the blood test to see what they are and look it up. Christ it’s such a palaver, isn’t it? Perhaps I’ll have to bite the bullet and pay £275 for the private appointment?
Running out of ideas xx
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Hi Andie,
I’m on Testogel sachets too, I prefer the pump for convenience but the sachets are being prescribed now. I think I’d get the blood test readings, research it and then decide whether to stop, increase etc. I had a discussion with my GP late last year and refused a blood test as I wanted to continue with a symptoms only approach. I started a thread on here asking for info/links to help me persuade the GP to agree, it worked. My main argument was that I didn’t want normal T levels for my age group as they would relate to women who were not supplementing Testosterone so irrelevant.
I believe T has played a big part in putting me back together, I would reduce or quit if I got negative side effects but I would not stop because of one blood result. I don’t know what the Menopause Society guidance is or what it’s based on and I’d research that too.
I hope you get to continue with T (as long as it’s safe to do so) without a fight. Good luck.x
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Thank you Victoria
I wasn’t aware there is a symptom only approach, I’ll mention it to my GP, I still think continuing would be with it. May I ask about higher dose of T? I’ve only tried testogel, is it ever possible/recommended to try to split the sachet over fewer days so higher dose? I was on 1 sachet / 10 days and I didn’t feel any difference really. Maybe a couple of times felt more energy so was hoping it was starting to work?
Thanks xx
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When I first started on it I had an implant, it took 2 months before I noticed any difference. I don't know if it's normal to take this long but I'd be inclined to give it a bit longer. We're you stable on the right dose of oestrogen before started T? If you're not I believe it gets converted.
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In the middle of Feb I read a letter from a retired GP, Dr Julien Helen Nash - saying that women should not have to fight for testosterone! Someone copied the Link to the Forum but I haven't been able to find it since :-\
"Testosterone is a female hormone and women need to claim it".
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Hi Andie,
I’m not sure if a symptom only approach is the norm, it might not be. My apt was on the ‘phone and I had a few arguments ready but didn’t need them. I’ll try and find the link to the post where members provided a lot of info.
I increased to a fatter pea than a petit pois but I didn’t monitor how many days the sachets we’re lasting but I think it was about 5. I’m starting a new sachet tomorrow so I’ll monitor it and let you know.
I’ve very recently felt my libido back, the feeling happened twice and I’m on month 7. I don’t know if it’s because I increased it or perhaps it’s because I’ve been taking it a while. The best benefits have been mental clarity which lead to recovery of confidence and motivation.
I agree with Sheila, I wouldn’t stop after 6 weeks but I’d get a copy of the blood test results asap, research them and then make a decision.
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Here's a link, hope it works, I didn't need to subscribe
https://epaper.thetimes.co.uk/search?query=. Dr20Julien20nash&newspapers=1148&startDate=2022-2-5&stopDate=2022-2-5&hideSimilar=1&type=2&state=3
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Hi Ladies
Thank you so much for your kind replies - to Sheila99 - yes I was instructed to increase estrogen dose from 2 to 3 pumps for 6 weeks, then another 6 weeks of 4 pumps BEFORE starting testogel. So I was on testogel (1 sachet split over 10 days) plus 4 pumps estrogel for 6 weeks - I would like to continue and actually try an increased dose but GP told me to stop - by a text message - due to my “free testosterone levels climbing”. Have a telephone apt next week so will try to stay on T but she is quoting “guidelines” so I don’t think she will let me continue. I don’t have any adverse effects of testogel - in fact I don’t think it was even doing anything - possible 2-3 occasions of a pang of libido and occasionally better energy levels. I want to be prepared for Wednesday apt so any ideas welcome ladies , thank you so much xxx
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Don’t know I’d this article might help at all? Covers men an women
https://dutchtest.com/2021/04/08/saliva-testing-model-for-transdermal-testosterone-monitoring/
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Hi there - I haven't read all the thread but just glanced at a few posts so apologies if I'm repeating what has already been said.
However I would suggest it is important with T replacement NOT to adopt a symptoms only approach because we need to ensdure that T stays within the normal limits for a woman, and not only that it can take several months for some of the longer term benefits to be felt, equally longer for some of the adverse side effects ie male characterisitics.
So T levels should be measured along with SHBG to calculate the Free Androgen Index because free T is not measured - so a proxy for this needs to be calculated. T levels - total T to remain within range.
Data protection?! Theyre fobbing you off. WHOSE DATA???!!! This is YOUR data. Good that they know about data protection so they dont give it away to anyone else but you are absolutely entitled to see and have it. We have computer access to our records - blood tests, special referrals, consultations, prescriptions, everything - you just have to sign up to their system and bingo it's all at your fingerttips any time you want to look at it.
If you don't have an patient online system then ask them to print them off - you might have to pay for the copes but they MUST do this for you. Before our computerised records system was online I used to get mine printed out ( but we didn't have to pay).
I make a tube last about a fortnight.
Testogel pump pack is higher concentration than Testogel sachets so if you transfer from the former to the latter then you would need a slightly larger blob to get the same effect ::)
I would never consider accessing my GP records :-\
Why not?! I want to know so I can make an informed decision!! Then you can't be fobbed off....also docs can be wrong.
Not sure if I've said anything helpful AndieKC but let us know the outcome
Hurdity x
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Of course helpful :thankyou:
I expect to see my GP or Practice Nurse to discuss results face2face - that's what they are paid for! Also results could be mid-interpreted by a patient.
If ever someone quotes The Date Protection Act I ask them a) have they read the section that relates to our discussion and b) is this Company Policy. If they haven't read that section, they are not allowed by Law to fob someone off. My pack of DPA was 2ft thick, cost me £72.00 for two years' cover and didn't apply to the job that I was doing anyway ::) (long story short). It usually stops the person 'quoting' the Act as I haven't yet, in over 30 years, spoken to anyone who actually knows what DPA looks like ;). Even the manager at our local Lloyds Bank had never read it ...........
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Hi Ladies
Thank you so much for your replies. I’ve managed to get access to my records by going to a different surgery. I’ve transcribed the charts and here are the numbers - can you please help me make sense of these?
The last one - the free androgen index - was too high even before I started testogel but GP (HRT trained) was happy to let me try for 6 months as I have all the classic symptoms of testosterone deficiency, incl absolute zero libido. But now wants me to stop as free androgen index is even higher. What I don’t understand is how can it be too high yet my symptoms haven’t changed… There were a couple of occasions when I felt a tiny improvement on the libido, and noticed slightly more energy sometimes so I felt it was promising.
Any help appreciated and thank you all xxx
SERUM ESTRADIOL:
Went from 102 pmol/L …….. to 194 pmol/L after increasing estrogel from 2 pumps to 4
Normal range: not known
Both results are considered NORMAL
SERUM TESTOSTERONE:
Went from 0.9 nmol/L (before starting Testogel) ….. to 1.3 nmol/L after 6 weeks of taking Testogel
Normal range: 0.1 - 1.42 nmol/L
Both results are considered NORMAL
SERUM SEX HORMONE BINDING GLOB:
Went from 18 nmol/L (before starting Testogel) ….. to 21 nmol/L after 6 weeks of taking Testogel
Normal range: 17 - 135
Both results are considered NORMAL
FREE ANDROGEN INDEX:
Went from 5.0% (before starting Testogel)….. to 6.2% after 6 weeks of taking Testogel
Normal range: 0.0 - 4.9%
Both results are considered ABNORMAL, before starting Testogel, and after 6 weeks on it !!!
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I think you need to Google low SHBG and high Free Androgen Index x
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So the BMS doesn't support womens' need for testosterone >:( mayB read the article if it's still available though my Link may not work :-\
We need to CLAIM IT as a right! If this were men :bang: :bang: :bang:
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I think your gp is right to be cautious, perhaps continuing in these circumstances could damage you. Hopefully she will explain when you speak to her.
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Nhs don’t test FAI as far as I know. Free androgen index. This should be between 3-5. I’ve been on testosterone for 4 months and still really low!!
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Hi all - my FAI was 4.3 recently and my specialist was happy with this - much to my alarm and little worry! She said is all good and within range! I’m on Testogel and a satchet is supposed to last me x5 days and based on the dosage my specialist has put me on (0.7 daily) but I measure it using a little scale (seems to work the best) and I get about 5 days per satxhet. I don’t feel amazing ... feel still waiting for it to work energy and libido wise. Still hoping .