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Author Topic: I’ve been advised to double my testosterone dose and am very nervous  (Read 1195 times)

Emzib0b

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Hello everyone,

Apologies in advance for the long post. Any thoughts would be gratefully appreciated.

I started using Androfeme (0.5ml per day) at the end of June (for absent libido, although I’m hoping it will help other issues such as brain fog, low energy, etc too). My consultant said that if there had been no improvement in libido after six months of treatment it should be discontinued. My baseline blood results before starting treatment were:

Testosterone: 0.58 nmol/L
Sex Hormone Binding Globulin: 97 nmol/L
Free Androgen Index: 0.6%

I had my levels retested after 6 weeks of treatment (as instructed my my consultant) and my testosterone and FAI had increased:

Testosterone: 1.14 nmol/L
SHBG: 96.8 nmol/L
Free Androgen Index: 1.2%

I wanted to keep an eye on things so had my levels checked again a fortnight ago, at the 15 week mark. I was surprised to discover my levels had dropped a little:

Testosterone: 1.02 nmol/L
SHBG: 95 nmol/L
Free Androgen Index: 1.1%
*All testosterone tests have been through the same company.

I forwarded my results on to my consultant, who phoned me yesterday. She said this was unusual and has asked me to double my dose of Androfeme to 1ml per day and have my levels checked again after 4 - 6 weeks. I have to be honest I’m pretty nervous at the prospect of this (side effects, including potentially irreversible ones!). Not to mention that this is going to get very, very expensive! (My consultant prefers to prescribe Androfeme).

I have a few questions:

Has anyone else had to use higher doses, and can you reassure me that it will be ok???

When I was getting to the end of my first tube of Androfeme I found I was unable to use the syringe to measure out a dose and had to eyeball an edamame sized blob. I was probably using a slightly smaller daily dose for the last 7-10 days of the tube - could that account for the plateau/drop or would that have corrected itself once I started a new tube (each tube lasts 12 weeks) and was able to measure out the correct dose again?

I recall reading a forum post from this year where a lady under Newson Health was told a FAI of between 2 - 5% is needed for symptoms to resolve. I recently learned that the BMS have revised how they monitor testosterone levels and the focus is no longer on free androgen index but instead total testosterone (unless SHBG is either very high or low). Going off my last few SHBG results (95-97), if my blood testosterone levels reached the upper limit of the reference range of 1.67nmol/L, then the highest FAI I can ever hope for is 1.7%! Any thoughts on this?

Sending well wishes to you all x
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CLKD

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Re: I’ve been advised to double my testosterone dose and am very nervous
« Reply #1 on: October 24, 2023, 12:56:15 PM »

What might be irreversible?  MayB add the extra dose every 3rd night to see how your body reacts?  Then add as necessary?  It can be Trial and Error!

MayB read the thread which Hurdity put up ........ I'll try and bump it.

testosterone here I go ............
« Last Edit: October 24, 2023, 12:58:52 PM by CLKD »
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Emzib0b

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Re: I’ve been advised to double my testosterone dose and am very nervous
« Reply #2 on: October 24, 2023, 01:25:50 PM »

Hi CLKD, I hope you’re well? Thanks for your reply and bumping Hurdity’s thread. I’ve read bits of it here and there in the past but I’ll definitely have a more in depth look when I can manage it.

I’m worried about irreversible changes such as voice deepening, increased facial/body hair, pattern baldness etc. When I was looking for the revised BMS guidelines I found their statement on testosterone from March 2023:

“A review of the patient to assess response should then take place at 6 months, and where there is no improvement using a female physiological dose of 5mg per day, treatment should be discontinued.

Using higher doses in women, could lead to potentially irreversible side effects including clitoromegaly, deepening of the voice and male pattern baldness.”


I’m trying to take some comfort in the fact we’re keeping an eye on my blood levels…I don’t know how long levels would have to be too high for before anything untoward happened though?
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CLKD

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Re: I’ve been advised to double my testosterone dose and am very nervous
« Reply #3 on: October 24, 2023, 01:50:14 PM »

Interesting.  Tnx for that.  This year ....... not old news. 

If U try updating and you don't feel benefit, that's the easy one - stop treatment?  There are most probably a % of allowance either way for amounts of most medications that we are prescribed.  [many years ago an Oncologist stated that less chemo may be OK but no one had at that time, dared mention prescribing less. over a longer period]

Is voice deepening likely?  Hopefully there will be more links in the thread that Hurdity has kept. 
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laszla

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Re: I’ve been advised to double my testosterone dose and am very nervous
« Reply #4 on: October 24, 2023, 02:12:29 PM »

Hi Emzib, I don't see the harm in making a small increase, perhaps not doubling immediately, checking your bloods again to monitor - I'm not familiar with Androfeme application but as it's the only ad hoc female T preparation I would imagine it would be fairly easy to adjust the dose.

I too have read that an FAI of at least 2 is required to feel well - and am surprised that the BMS are no longer taking this much into consideration - on what basis I wonder...

I'm at the Chelsea and Westminster NHS meno clinic and they always have me measure my FAI, presumably because they think it is of value. My SHBG is very high so my FAI remains really low, has never got to 1, hence I had a testosterone implant 2 weeks back as 5 years of testogel has done nothing for me. But I will post my own thread about that.
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Emzib0b

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Re: I’ve been advised to double my testosterone dose and am very nervous
« Reply #5 on: October 25, 2023, 03:05:39 PM »

Hi Emzib, I don't see the harm in making a small increase, perhaps not doubling immediately, checking your bloods again to monitor - I'm not familiar with Androfeme application but as it's the only ad hoc female T preparation I would imagine it would be fairly easy to adjust the dose.

I too have read that an FAI of at least 2 is required to feel well - and am surprised that the BMS are no longer taking this much into consideration - on what basis I wonder...

I'm at the Chelsea and Westminster NHS meno clinic and they always have me measure my FAI, presumably because they think it is of value. My SHBG is very high so my FAI remains really low, has never got to 1, hence I had a testosterone implant 2 weeks back as 5 years of testogel has done nothing for me. But I will post my own thread about that.

Hi laszla,

I was pretty shocked to learn of the revisions the BMS had made. Given that our SHBG naturally increases with age I wonder how many of us could achieve a FAI above 2% while keeping total testosterone at 1.67 or less once we reach our forties or fifties!

Androfeme comes with a syringe so it’s easy to adjust in tiny increments. I tried 0.6ml yesterday and today and feel fine so will probably move up a little every few days as long as I don’t have any side effects. If I need to stay on 1ml in the longer term I’m going to ask about Tostran. I’m feeling a bit more comfortable about trying a higher dose now I’ve had time to process it all. I either have an absorption issue or I’ve reached a point of diminishing returns!

I’m glad your specialist has persisted with your testosterone treatment and I hope you have success with the testosterone implant. I’d be interested to hear how you get on. I got the distinct impression from what was said that my treatment will be stopped if I don’t have a libido by December, regardless of what my levels are :(
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laszla

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Re: I’ve been advised to double my testosterone dose and am very nervous
« Reply #6 on: October 25, 2023, 07:12:09 PM »

Emzib, increasing the andro in small increments sounds like a good idea and v manageable with a syringe, I hope it works out for you, keep us posted.

I didn't know that SHBG increases with age - I know it goes up with oral oestrogen (though allegedly not with transdermal) and can increase in women with low body weight.

For the BMS to disregard FAI makes no sense and seems very retrograde...
So far I don't notice a difference with the implant - except possibly slightly stronger legs - but it's early days :) 
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Hurdity

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Re: I’ve been advised to double my testosterone dose and am very nervous
« Reply #7 on: October 25, 2023, 07:30:43 PM »

Hi Emzibob

The most important thing is not the testosterone levels per se - though of course it is good for them to be checked from time to time to ensure they remain within the range for women (and once you are settled on the right dose this surely does not need to be done frequently) - but your symptoms.

You are taking it for absent libido and have been told that you were initially told you will be taken off it if your libido hasn't returned by December, but now have been asked to double the dose.

I infer from this that your libido has not yet returned though you have not mentioned whether it has or not (not that I could see)?

OK so what other HRT are you taking? Tablet, patch gel or spray? Also are you taking progesterone and if so what type and what regime - cyclical or continuous etc? Are you taking any other meds eg anti-depressants that could affect libido? All of these things may have a bearing on how effective the T will be on your libido.

Is vaginal atrophy under control ie is intimacy sore and uncomfortable? What aspects of libido are absent - everything ie desire and response, or just one of them?

Measurement of T levels is very inaccurate at low levels because the tests are designed for levels found in men and are not sensitive enough to pick up the variation that occurs in women - though granted you have had several tests done.


Hurdity x
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Emzib0b

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Re: I’ve been advised to double my testosterone dose and am very nervous
« Reply #8 on: October 26, 2023, 05:03:10 PM »


I infer from this that your libido has not yet returned though you have not mentioned whether it has or not (not that I could see)?

OK so what other HRT are you taking? Tablet, patch gel or spray? Also are you taking progesterone and if so what type and what regime - cyclical or continuous etc? Are you taking any other meds eg anti-depressants that could affect libido? All of these things may have a bearing on how effective the T will be on your libido.

Is vaginal atrophy under control ie is intimacy sore and uncomfortable? What aspects of libido are absent - everything ie desire and response, or just one of them?

Hi Hurdity,

Thanks for stopping by, your input is always appreciated.

HRT wise I’ve been using Evorel patches and cyclical Utrogestan (200mg orally) for the last 18 months. I was prescribed vaginal oestrogen in May, mainly for bladder issues and occasional vulval issues, both of which are much improved.

I’m not on antidepressants or any other meds known to affect libido. I’ve checked against the meds I do take and can’t find any documented connection with libido/effects on hormones.

Re my libido - I have no desire whatsoever, no sexual thoughts, it’s as if the sexual part of my brain is completely offline. All the things that used to have an effect on me now do nothing. When OH and I still tried in the past, response was also not great, and ‘O’ was a lot harder to achieve and not as strong. No relationship problems, very much in love with OH, we’re very close and open, no communication issues, rarely argue. He’s been completely patient and supportive over this.

It would be incomplete of me not to add that my libido problems started a number of years before perimenopause but it would show up from time to time, enough for OH and I to manage intimacy on an irregular basis (much less than either of us would have liked). My libido completely disappeared at the onset of peri (age 38, I’m now 41) and we haven’t had sexual contact in all that time. I used to have a very high libido/good response before all these problems so this is all very upsetting for me, I don’t even feel like me anymore.

I had a diagnosis of Chronic Fatigue Syndrome when I was 30 and I realise this could be a major player in my libido problems. My testosterone has been low since I was 33 (possibly younger but no data available between 27 - 33) (<0.4 nmol/L age 33, a drop from 1.5nmol/L age 27). I have often wondered if there is a link between the low T for my age (at the time) and my fatigue/low libido.

I saw a psychosexual therapist for a couple of years when I was in my early/mid thirties. She concluded there were no psychological, emotional or relationship issues affecting my libido.

Re improvements - there was something a few weeks ago - some subtle effects that occurred over the space of a week, which is a huge improvement compared to the last few years! Unfortunately it didn’t last but I’m staying hopeful it could happen again!
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Emzib0b

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Re: I’ve been advised to double my testosterone dose and am very nervous
« Reply #9 on: November 09, 2023, 02:20:16 AM »

Emzib, increasing the andro in small increments sounds like a good idea and v manageable with a syringe, I hope it works out for you, keep us posted.

I didn't know that SHBG increases with age - I know it goes up with oral oestrogen (though allegedly not with transdermal) and can increase in women with low body weight.

For the BMS to disregard FAI makes no sense and seems very retrograde...
So far I don't notice a difference with the implant - except possibly slightly stronger legs - but it's early days :)

Laszla I’ve sent you a PM.
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laszla

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Re: I’ve been advised to double my testosterone dose and am very nervous
« Reply #10 on: November 09, 2023, 09:28:42 PM »

Have answered Emz
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