Dr Katie Barber on everything you need to understand about testosterone and peri/menopause

Over on the Middling Along podcast we speak to a wide range of experts to bring you the best advice out there.

We curate a selection of these here as transcripts, to give you another way of accessing the information and advice.

This time we speak to Dr Katie Barber, Menopause Specialist with Oxford Menopause, to cover testosterone, HRT, and libido.

Emma: So, let's talk testosterone. It's been all over the news lately. I thought it'd be really useful to do a bit of a deep dive on the topic because I think there's a lot of confusion out there, do you think that's fair to say?

Katie: Oh, completely. I mean, we've gone from very few women using testosterone to being, quite abundant in, in testosterone prescriptions over the last few years, thanks to lots of publicity about it, but it's really important women understand the right reasons for using testosterone.

Emma:  First of all, if somebody has read or heard that testosterone is prescribed off-license, can you explain to us what that actually means?

Katie: So what this means is that there isn't an NHS license for this particular medication in women. So, hormone replacement therapy is licensed and regulated. It has evidence to back up its prescribing, and that's something that's widely available now. In the NHS we use lots of medication that doesn't have a formal license. For example, a lot of chemotherapy, where we are using drugs that are used in trials might be off-license. That doesn't mean it's not safe to use.

There's evidence to support its use. It just doesn't have a specific license in that particular group, or a specific indication. And testosterone fits into that group in that it's obviously licensed and approved for use in men who have low testosterone levels for specific reasons. And we know there's a reasonable body of evidence to support it being used in women.

It just doesn't have a specific license, so it is used ‘off-license’. And as with all medications that we use in the NHS and privately, if we can justify a medication is safe and effective and doesn't cause harm, we can use it without that license specifically. So that's a bit of a long-winded response, but I hope that makes sense.

Emma: Makes perfect sense to me anyway! I know that there is a product in Australia that is designed for use by women, but we don't have that here in the UK. So, if somebody is getting testosterone prescribed, what they're actually getting is the product that would be given to men, but they have to use it in a slightly different way.

Do you think that's likely to change in future and that we will have specific products that can be then used a bit more easily by women needing testosterone?

Katie: We would hope so, wouldn't we? Going back to what you just said about the Australian product, it is available in the UK but it's not available on an NHS prescription. I routinely prescribe this product, which is called Androfeme. It comes in a pink tube and it's dosed for females. But it's basically a product that is licensed and regulated in Australia. So it's delivering testosterone - 10 milligrams in every one millilitre of cream - it comes with a little syringe. And the dose for females is five milligrams daily, so you use half a millilitre, and the syringe allows you to accurately measure up half a mil and apply that as a cream. We tend to rub testosterone below the waist, so buttocks, thighs, tummy, lower abdomen. And that is available privately. So a lot of private clinics across the UK will prescribe Androfeme. It's quite a nice product to use. It doesn't have an odour. It's easily absorbed. It has quite steady absorption into the bloodstream because you're delivering the same dose every day.

So that's what we use privately. And on the NHS we use, like you said, products designed for male use, but we use much, much smaller doses. So we're still aiming to give women a five milligram daily dose, but we use gel products and there's three particular brands that we use. We use Tostran, which comes in a pump action canister. We use Testim gel that comes in little tubes, and we use Testogel sachets. So little sachets, a bit like Sandrena sachets for oestrogen delivery. They're, they're not dissimilar, slightly larger, and each of those different products has a different concentration, a different strength of testosterone. So, for example, Tostran delivers 10 milligrams in a single pump.

So we say to women either use a whole pump every other day, so you're getting 10 milligrams one day and nothing the next, average out at five milligrams daily. Or try and do half a pump every day. Testim comes in a 50 milligrams tube, and you want five milligrams daily, so you use a 10th of a tube, which is like a little pea-sized blob and Testogel now comes in 40.5 milligram sachet. So eight fives or 40 roughly. So eight days use is one sachet. So it's not easy, but it's certainly achievable. And I think there's this view of you must go privately for testosterone therapy to get a specific female product. You don't have to, we can work within our limitations and prescribe these other products. We just have to adjust the dose accordingly.  

Emma: I think it was Kate Muir who was saying that she sort of squeezes some into a pot, and then sometimes she'll get a bit much, so sometimes it'll be a ‘big testosterone day’ and sometimes it'll be a ‘little testosterone day’. It made me laugh. So are some GPs reluctant to prescribe testosterone because of it being off-license? And, and if that's the case for somebody, what recourse do they have? What can they do?

Katie: So I think the thing with testosterone, it's not just not being able to prescribe it as a licensed medication because actually a lot of medication we prescribe in the NHS is on the advice of specialists. GPs can prescribe testosterone, but a lot of them will want the advice of a specialist who has assessed the patient, determined the suitability for treatment, dosed, monitored, and stabilized that patient first. And it's difficult because testosterone previously was something that could only be prescribed under specialist indication because there was a concern, about incorrect dosing, harmful side effects, and the fact that this is unlicensed medication.

Traditionally it's always been initiated, dosed, and monitored by a menopause specialist, but we are seeing phenomenally huge numbers of GPs across the UK, upskilling in menopause, and learning more about safe prescription of testosterone. And so I think it's unreasonable to say it has to always be prescribed by a specialist because you've got some GPs out there who aren't working as menopause specialists that have significant expertise or a level of knowledge to be able to prescribe it safely.

And in the NHS, and privately, as long as we work within our scope of expertise and we're not doing something that's outside that expertise and that's reasonable. So you may just find that your GP doesn't have the experience or understanding to be able to safely prescribe it.

Now in those circumstances, you can quite rightly see a menopause specialist who may well start that ball rolling for you, get you stabilized on testosterone, and then potentially hand that responsibility for prescribing back to your GP so that you've got a clear management plan of how testosterone's going to be continued going forward.

Emma: And it's maybe then worth take taking a step back because actually somebody wouldn't be prescribed testosterone unless they were already on HRT and that was all kind of working well for them. And can you explain a bit about why that might be so?

Katie: Current NICE guidance and NG 23 guideline clearly state that testosterone can be considered where women have ongoing issues with sexual function, and the term we use is hypoactive sexual desire disorder. It sounds quite medicalized, doesn't it? But you know, impaired arousal, inability or difficulty achieving orgasm and low sexual drive, low libido.  And it's really important to say that libido in women is multifactorial. It's not just, I fancy my partner, I want to have sex with them. It's all about how everything in our lives fits together. So if we have psychological stresses that can impact sexual function, If we've got really severe vaginal atrophy or oestrogen deficiency in the vagina and vulva, which makes intercourse painful, that's going to have a negative impact on sexual function and libido.

So it's really important that we correct those other factors. First, NICE state that we can consider testosterone if those have been excluded and addressed. If HRT alone does not suitably increase libido and sexual function, and a lot of women will find when HRT is optimized, sexual function is significantly better.

Now the reason that you must be on HRT first before you try testosterone ruling was incorporated, is because we've previously seen much higher levels of side effects. If women use testosterone on its own without HRT, that doesn't mean it doesn't provide benefit: we've got some small studies that suggest women do notice an improvement if they use testosterone alone.

But the side effect incidence is much higher and that's what we're wanting to minimize those adverse testosterone side effects.

Emma: And is it true that if somebody is taking testosterone, that that could be converted into oestrogen if they're not taking the oestrogen component of HRT and they've got low oestrogen?

Katie Barber: We convert testosterone into oestrogen through aromatase, which is an enzyme that lives in our peripheral tissues quite happily all the time. But that transfer could be more pronounced potentially if you're not well oestrogenized. So yes, there's a rationale and that's why then more of that testosterone potentially is no longer effective and you get a reduced response. But it's the side effect profile really that drives that.

Emma: Often women who are taking testosterone report that it seems to help with other symptoms besides that very low libido. At the moment, we can't prescribe it for those other symptoms, and there potentially isn't the evidence to support its use for that. Is that right?

Katie: Spot on, absolutely, and that's really because we don't have much data on testosterone in women. This is a really under-researched area of hormone therapy in women in general. There are studies, there are trials, but the number of women in those trials, if you add them all together, is still relatively small.

So that, then, inhibits the sort of power of that information and how statistically significant it is. So what we do know, from the limited data we have thus far (and I’ll come on to what's coming up next) - we know that the group of women using active testosterone compared with placebo (pretend cream, no testosterone in it), the active group showed us a statistically significant response in terms of sexual function, so libido, arousal, orgasm. There were different markers of sexual response, sexual satisfaction scores, and those were all very significant. What was evident is that there were similarities in both groups in terms of other symptoms, so mood, cognitive function, energy, sleep, wellbeing, muscle strength, joint pains, things like that. But there wasn't a discernible or statistically significant difference between the pretend testosterone cream, which wasn't active and the active testosterone cream. So, that's what's led to us saying, well, actually we don't have enough evidence to support it being used purely for those reasons, but we do for sexual function.

In terms of where we are going, the NIHR are going to launch a trial looking at responses to testosterone for all those reasons. So more women being studied, and the British Menopause Society is collaborating on this trial to try and determine the significant outcomes in much larger cohorts of women using testosterone, specifically looking at those non-sexual symptoms that could improve, like mood, cognition, energy, etcetera that I've just mentioned.

Emma: What's the timing likely to be? Presumably it's going to be a fairly long time before we know the results of that study. What, a couple of years?

Katie: At least, because you have to get ethics approval, you have to ensure that you've got funding for the trial itself, it has to all take place, it's got to be followed up over a reasonable period of time. And you've got to recruit sufficient numbers of women because the trial data we have so far is in limited groups. And the idea of this is that we get a large cohort of women because then when we number crunch the data, it's more significant.

We've got far more positive outcomes potentially to be included. So it's a long term thing, but it's a step in the right direction for sure.

Emma: I think there's another scientist, Dr. Susan Davis, who's based in Australia, also doing ongoing research in this area. Is there any link between the fact that Androfeme is available and the fact that they potentially further ahead with the research in Australia? Do those two things go hand in hand?

Katie: Absolutely. Yes. I think, you know, when you've got something that's forward thinking and moving in the right direction, and then you've got a product that's licensed and regulated, it's, yeah, two and two equals four. But, you know, I think the difficulty is that there's this feeling sometimes that you have to have this specific product in the UK and everything else is inferior, but it isn't, you know, it's still testosterone. It's delivering the exact same product in a very similar preparation to achieve the same outcome. It would be lovely to have a specific female product. That doesn't necessarily have to mean Androfeme.

It could be a new product that's marketed specifically for women and regulated and licensed in the UK, like all other drugs that we use. But I think it would be nice for something to be available that gives you that specific dosing that's licensed in the UK because it does make dosing a little bit tricky with the products we're using.

And we do see fluctuation in blood levels, which is something we monitor on testosterone. So unlike HRT where generally we don't do blood tests to tell you how much to take, on the whole testosterone is something that does need close monitoring. And the reason we monitor it is to reduce the risk of side effects.

We pick up women where their levels are going into slightly higher than normal female ranges, and then tend to get them to pull back on their dosing or reduce so that they don't have side effects.

Emma: And how frequently would they need to have that sort of follow up?

Katie: So when we initiate testosterone, we tend to check a baseline testosterone level, and that's to pick up women who maybe sit on the higher end of normal anyway. Typically they may include women with polycystic ovaries, for example, because they often have slightly higher circulating testosterone levels. And we don't want to give testosterone to a woman who's already nearly at the upper end of normal because they're more likely to get those testosterone excess symptoms.

If it's fine to start testosterone, we've got scope to improve. We tend to check blood levels. The guidance is six to eight weeks really, or, or even a month ideally. The difficulty in the NHS is achieving that short timeframe review, which can be tricky. I think there's an understanding that six to eight weeks is a reasonable period of time.

That blood test doesn't tell us what to do in terms of whether your testosterone should be working. It can take three to six months to show significant benefit. The blood monitoring is done to ensure safety of dose . To pick up women who've then got quite high testosterone levels and we do determine at that point whether women are using the correct amounts.

If we get a high level, is it because you put your testosterone gel or cream on just before you went for your blood test? Is it because actually you thought you'd try and speed the process up and start doubling or trebling your test screen? It does happen! And then we tend to say if that level is within the normal female range and there's improvement from your baseline pre testosterone levels, we would say six to 12 monthly monitoring and that depends on the individual patient. It depends on dose adjustments, it depends on side effects. It’s good practice to review women after two to three months with that early blood test just to see how they're getting on. And certainly at two to three months I would not be expecting a pronounced improvement in sexual function.

But I'm wanting to assess for side effects or, or issues. You know, have they had any new bleeding? Is there any hair growth? Is there any change in wellbeing that would suggest I should stop their testosterone. And then I tend to review again at six months. And at that point we would say if you've had a discernible improvement in your blood testosterone levels with the testosterone cream or gel that you are using, and you have noticed no benefit whatsoever in sexual function, it's not going to start working beyond that point and it should be discontinued.

And then generally women can come in every six to 12 months for review depending on their dose and other, other issues that they might have.

Emma: Just to recap on that – it takes a while to kind of build up and notice any difference. So after giving it six months to see if it's making a positive impact on somebody, if they really haven't noticed any difference, you would say just stop taking it?

Katie: If their blood levels have improved, in other words, we know it's being absorbed, it's effective in your circulation, you are not noticing any impact positively, then there's no point carrying on a treatment that's not providing any benefit.

Emma: And I think some people who have had this prescribed via, say, a private prescription, try and then go back to their regular GP and have it prescribed in one of the formulations that you talked about… And then for whatever reason they're not able to have that happen. Is there anything that they can do apart from carry on, trying to get that privately?

Katie: The difficulty is, this is a bit of a postcode lottery in terms of things going in on in different areas of the country in different ways.

So locally to me, the Menopause clinic in Oxfordshire on the NHS will often initiate and dose women, and then most GPs in Oxfordshire are then comfortable to take over prescribing because we've kept women under our care. And if your blood monitoring is stable and there's clear guidance given to the GP about what to prescribe, and how regular monitoring should be and what that monitoring is. And I think it's really important that if you've got a group of doctors who aren't routinely doing this and are not familiar, that if they get a level that is outside that normal range, they can then communicate with a specialist and get advice promptly to then manage that patient appropriately or have a system of referring that patient back.

And I think that system is what is difficult to achieve nationally at the moment. It would be lovely to see a unified approach. Because that's where you get clear management guidance for patients and you get consistency of access to testosterone and all sorts of other treatments.

Emma: Anything else that we should bear in mind, if somebody is thinking about going back to their GP or to see a private practitioner to ask for this? Is there anything that they should prepare for that appointment? Bring with them?

Katie: I think the first thing to say from the patient's perspective is do your research. There's some lovely resources out there which will give you lots of information about testosterone. So look at the British Menopause Society website. Look at the Women's Health Concern website. And they will provide information for you about the role testosterone plays. Always follow medical advice.

There's some fantastic advocates for HRT on social media, but they often put their personal experience forward, which may not be medically validated or evidenced, so please don't assume you are the same as that person telling their story on social media.

The other thing to say is think about why libido may be affected. I speak to a lot of people who, you know, they've got older children that aren't going to bed at a reasonable hour, they're awake at the evening on their iPhones or whatever in their bedrooms and on their tablets.

And so perhaps the environment for normal sexual function as we age changes. So the woman that comes in and says, I had two weeks on holiday, just my husband and I, and we had the most fantastic sex life while we were away, but my libido's low when I'm at home. Well, why is it, is it because you've got teenagers in the house?

Because that's not really the right reason to use testosterone necessarily. It's not going to change those environmental or external factors. Likewise, someone that comes in who's got marked vaginal dryness and sex is very, very painful - my responsibility to them is to optimize their vaginal comfort.

So can we put some oestrogen back in vaginally? Do we need to use some lubrication here to improve comfort? Because, you know, if we have a really negative experience during intercourse and it's painful and sore, we are less likely to want to do that again. It will impact in a negative way. So, you know, making things as comfortable as they can be so that reinforces the libido and the improvement in sexual function is key.

And then when all of those factors have been addressed, if it's actually, no, this is a real problem for me, or everything's fine, you know, great relationship, nothing going on, everything's comfortable. I would just rather watch a box set and have a cup of tea and go to bed. Then actually it's really reasonable to trial testosterone.

I think be prepared for those things to be asked of you when you go into a consultation: is there anything else going on? And if you can put yourself in a position where you've optimized all those other factors as much as possible, great. I think the other thing is to expect a GP or other healthcare professional to want to perhaps optimize your hormone replacement therapy if you're using that first.

Because generally we see improvements in libido when oestrogen is optimized, when that's all good, and you’re hormonally replete, libido does tend to improve, and that can often improve to a degree where you don't need to have any additional testosterone. So don't assume it's necessary for everybody. Not everybody needs testosterone.

It can sometimes be improved just with HRT alone, or for some women it's just improving vaginal comfort. Just using vaginal oestrogen can improve things significantly.

Emma: I think that's maybe something that isn't as well understood, is that can be almost, if you like, decoupled from systemic HRT, so you can have local oestrogen as well as HRT or instead of. Do some people start on vaginal oestrogen before going onto HRT?

Katie: It's often the other way around actually. You often find that women will start on systemic HRT in their late forties, fifties, but the vaginal dryness and atrophy, thinning and fragility of the vaginal tissues is often something that develops as you transition through the menopause and you become more oestrogen deficient from your own underlying oestrogen levels. So it tends to be the other way around, but actually I do see a lot of women, particularly women who've had their ovaries removed surgically, where the vaginal symptoms can be quite pronounced.

And actually likewise in that cohort, testosterone deficiency symptoms and sexual symptoms can be really, really affected. Your ovaries produce roughly 50% of the body's testosterone and we see a natural decline and it's not falling off a cliff at 50. But surgical menopause, physically taking those ovaries away, does create a pronounced dip in testosterone and for those women that have undergone surgical menopause that really can impact on those sexual symptoms. Testosterone deficiency symptoms are something to consider in that group specifically.

Emma: What about somebody that has premature ovarian insufficiency and is being put on oestrogen and progesterone elements of HRT for that? Would they normally have testosterone as well?

Katie: Again, it depends on how their symptoms are affecting them. Some of those women often have no symptoms at all, and this is where it's quite difficult when you're a menopause specialist, you often pick up women with premature ovarian insufficiency.

They've been found incidentally when they've gone through investigations because their periods have stopped or they've got fertility issues and they may well have no menopausal symptoms whatsoever. And actually in that group of women, the key priority is returning their oestrogen levels to where they should be to protect them against the long-term health impacts of an early menopause.

And again, testosterone in that cohort would not be considered purely because of the diagnosis. It would be based on symptoms.  

Emma: Anything else that you want to add on the great testosterone deep dive?  

Katie: The main thing is, if you feel you need something along the lines of testosterone and HRT hasn't optimized things, don't feel it's your GP or nowhere.  If your GP doesn't have the expertise or confidence to prescribe, they can ask for help. And if needed, that might be referring you through to a specialist menopause service. In Oxfordshire, it might be the community gynaecology service. In other areas of the country it might be a specialist gynaecologist with menopause expertise.

But there's usually somebody your GP can ask for help and either then get guidance and advice to prescribe it themselves or physically refer you to, so that person can make an assessment and determine whether it's a suitable treatment for you.