The Dr Louise Newson Podcast - 210 - What is the right dose of HRT for you? Hormones and premature ovarian insufficiency

Episode Date: June 27, 2023

How do you work out what the right dose of HRT is for you and balance the benefits with any potential risks? In this episode, Dr Louise talks about HRT doses with Corinna Bordoli, who began experiencing menopausal symptoms when she was just 10 years old. Corinna shares her experience of premature ovarian insufficiency (POI) – menopause before the age of 40 – and of the challenges she faced in getting a prescription for a higher dose of estrogen to help both her symptoms and future health. Dr Louise and Corinna discuss why hormone needs and absorption can vary from woman to woman, particularly for those with POI. Corinna’s three tips for those who may suspect they have POI:  1. Keep track of your perimenopausal and menopausal symptoms so that you have evidence when you go to see your doctor. 2. If you are diagnosed with POI make sure you seek out a specialist in the condition to get the best care. 3. If you have POI, find a community of other people with similar experiences for support, such as through the Daisy Network. Sharing your story and hearing other people’s stories can make a huge difference and be healing. Find out more about the charity the Daisy Network mentioned in the podcast here, or on Twitter  @thedaisynet.

Hello, I'm Dr Louise Newsome and welcome to my podcast. I'm a GP and menopause specialist and I run the Newsome Health Menopause and Wellbeing Centre here in Stratford-Bron-Avon. I'm also the founder of the Menopause charity and the menopause support app called Balance. On the podcast, I will be joined each week by an exciting guest to help provide evidence-based, information and advice about both the perimenopause and the menopause. Today on the podcast, we're going to talk about people who are neglected when it comes to the menopause. There's lots of people who are neglected. But the group of women that I really

worry about, the people that actually do keep me awake at night, are young women who are really often not listened to, not believed and often not diagnosed as having an early menopause. And when I was at medical school, I was taught if a woman doesn't have her periods, Louise, just make sure she's not pregnant. And if she's not pregnant, you can reassure her. And obviously, thankfully, I've learned a lot and that was completely wrong advice. I'm very delighted to introduce to you, Karina, to the podcast, who is going to share her story and also some of the work she's doing to help other young women. So welcome today. Thank you, Louise. Thank you so much for having me.

That's fine. Do you mind just saying how old you are? Yes, I'm 27 years old. And shall I also say when I started having symptoms? Yes, I was 10 years. years old. 10 years old, yes. So we'll talk about that. But if I Google menopause, I don't think I've ever found a 27-year-old or a 10-year-old or a teenager. It's usually people with grey hair, actually. So even me as a 52-year-old do not identify myself with the people that are portrayed often as menopause. It's always someone with a fan, isn't it? With a head in their hands, with a fan, usually grey-haired, obviously white, usually, you know, Caucasian women.

It's just so wrong. And actually, when I've been talking to people recently with some of the book festival tours that I've gone on, and I've said to people, no one's too young, and one of my youngest patients was 14 when she was diagnosed, I can actually hear the audience go, as if, oh my goodness, that's really, and it's not actually. it's something that we need to think about more, and we really need to be aware, not just necessarily for ourselves, but for our children or our children's friends or relatives

or people we work with as well, because there's also this whole mid-life conversation, which must really wind you up as well, because it's not the mid, even as a 52-year-old, you know, menopausal, I might not live till I'm 104, so I don't think I'm in my mid-life either. you know, there's lots of words that must really wind you up. So just before we talk about that, just tell me a bit more. So you were 10. So 17 years ago at 10, you're, you know, that age,

people are starting to develop little bit sometime, not always. My three daughters have been quite late developers. So, you know, it's not unusual, is it, at 10, to not be starting your periods. But then what happened? Yeah. So actually I felt like I was starting to develop in some bits and then eventually that stopped and so I was very aware of it I knew that there was something wrong with my body and I was going through lots of various things so I was a child singer and then very quickly my voice started like drying up basically and just developing some singers problems like nodules which normally go away like with a little bit of voice therapy and they just were not going away and then I kept getting injured when I was doing sports I was literally on crutches like three times a year

for like six years. And again, every time I went to A&E or a specialist, they would just say, well, just give it time, you know, you're growing really tall and, you know, this is the time where your body's changing. So just, you know, just be patient and give it time. I also had hard palpitations. At night, I couldn't sleep. I had a lot of anxiety. Again, I went to different specialists for each and every one of these issues and I was just told I was fine. But I knew I wasn't. fine. And I also knew that all of these things were connected to the fact that I wasn't having my period yet. And I kept telling my GP and just getting dismissed, well, let's wait one more year before we investigate this. So you sensed that there was something not right? Yes. But you still, you didn't know how to get the right help.

Yeah. Yeah. I think very often like you'll know within your body if there's something that's wrong. But it was years and years of being told that actually, no, there wasn't anything that was wrong. that really obviously impacted how I felt about myself as well. And then what happened? So finally, at 15 and a half probably, so I was almost 16 years old, my GP gives me a referral to a pediatric endocrinologist to check my hormones, basically. And so I went to the best clinic in Italy. There is, and I was basically told my ovaries didn't work and I couldn't have children.

But I wasn't really told this was the same as the manopause. And I wasn't really explained what this was going to be like. So I was just put on the birth control pill and, yeah, just told, you know, just take this once a day for the rest of your life, you'll be fine. And did that make any difference being on the contraceptor pill? So it gave me a bleed. So I developed in some ways, although my breasts did not, almost didn't develop at all. So I don't think I developed properly.

I did feel good about having a period finally or something like that. So at least I felt a little bit more normal, but my symptoms very much continued. And yeah, that's a little bit unfortunate because had I known back then that that wasn't the best treatment. I would have definitely chosen the best treatment to feel better. Yeah, and that's really important, isn't it? Because the contraceptive pill, for those of you who are listening, it usually is a combination contraceptive pill we're talking about here. So it contains estrogen and progesterone, two of the hormones that obviously are low when people are menopausal.

but they're both synthetic. So it means that they've just been chemically altered so that the estrogen isn't quite the same as the pure estradiol in our body, the progesterone, there's lots of different types of synthetic progestogens, but they've all been chemically altered. So they don't fit the receptors beautifully like the natural hormones do. And they are different doses as well,

and when we're younger, we produce different amounts of hormones to when we're older, of course, as well. but this is a fixed dose combination. PIL and some of the guidelines for women with POI, premature ovane insufficiency do state we can consider HRT, so hormone replacement, or the combined contraceptive pill. The other hormone that obviously isn't acknowledged when people have the combined oral contraceptorpe pill is testosterone.

And actually having oral estrogen can increase something called the sex hormone binding globulin, which actually reduces freely available testosterone. So if women do have some testosterone in their body, then taking a contraceptive pill will lower that anyway. For a lot of women, they don't really notice. But even women who, without POI, who take the contraceptive pill, can notice that they have reduced libido, feel a bit more fed up, a bit flatter in their mood, a bit less energy. And that often can be because there's less effective testosterone in the body. But if your ovaries weren't working, we know then that your estrogen progesterone and testosterone

and are likely to be low, aren't they? So taking the combined oral contraceptive pill for some people is fine. But if it's not helping your symptoms, then it's not good enough, is it? So what did you do? Yeah, so the thing is, I obviously didn't know what it was like to feel normal. And so I just accepted, I guess, that was me. So I thought I was a very anxious person. I had lots of mood swings.

I was also on one of those pills that give you a week's break. So for a whole week, I was, my mood was really, really, really low and I was suicidal. It was really, really difficult. But also, I wasn't back to sort of my old self, I guess, although obviously my old self was a child self, so it was really difficult to know if that was just normal or not. But I also kept getting injured again, a bit less than I did without anything before my diagnosis. But still, I broke my foot by doing Pilates when I was 20 by literally just going on to my tiptoes. And since then, that's got into necrosis. and all sorts. And, you know, I was very young and it's just a little bit, you know, unfair that,

again, that happened. And I just wasn't aware, you know, I just assumed my body just doesn't work, really. Yeah. And that's so important. Obviously, a lot of the work that I do is about allowing women to have education. But when we look at premature, o'bary and insufficiency peer-wise, what it's defined as, it actually means women under the age of 40, as you know. And we've always quoted, it's one in a hundred women, A recent study said it's probably three and a hundred women. Women with living with HIV, it's actually more like 20% of women. And I think globally that the percentage is actually quite a bit higher. I don't know what you think out of, you know, your reading. Yeah, I mean, it sounds like it's a lot more. It sounds like it takes years and years for people

to actually get diagnosed and lots of them never actually get diagnosed because they're on the pill or there are some other reasons and maybe they just realize they have BUI just before they're actually menopause or so yeah to be honest it's really really scary to just speak to other people who've lived decades and decades like me and so they're just trying to figure out if that's them if that's their hormones and they just have no sort of baseline they can't just be like well two years ago I felt really good now I don't feel good anymore and it's the whole of their lives they've led yeah and that is a problem because it's also we talk about the menopause but there's also the perimenopause so for a lot of women who's

ovaries just naturally fail earlier or don't work as efficiently, then they might still have periods. And so then it's very difficult, isn't it, to know? But we know, I've read some studies that say that it takes seven years for women to be made the diagnosis and that they see at least seven doctors as well. And they would have seen doctors like me 20 years ago saying, oh, if you're not pregnant, don't worry. And, you know, you're probably a bit stressed. That's why you're feeling anxious. You know, there's something else going on, which is awful, or given the contraceptive pill, but if you have a week off, a week pill-free, that means a quarter of your time is without hormones. And then the other thing, it's not just about symptoms.

Clearly, it's outrageous that women are being ignored when they have so many symptoms. But even if we put that aside, and there's some evidence that women with P.O. I don't have the same classical symptoms as older women, or they present sometimes differently, every single woman with an early menopause, whatever the cause has health risks associated with it. And that's something that's really important, isn't it, for people to know from the outset? Yeah, I mean, I was told luckily to do my dexas scan every few years, and that's obviously like one of the main issues, I guess, you know, check your bone density. But also heart and brain function.

And I think that is something that maybe there isn't just one easy way to sort of check or check hormone levels are fine but I guess you know immediately when I went on to HRT like the way I also felt more I guess not clever that doesn't sound right but less brain fatigued really really changed and yeah just generally the you know I felt better as a whole as a whole human as opposed to just you know being able to get out of bed that was an achievement yeah which is amazing so if if you don't mind saying, you're taking HRT now rather than the contraceptive pill. Yes. And how are you taking the HRT? Are you taking the hormones separately?

Yes, I'm taking the patches for my estrogen and I'm on a 200 dosage at the moment, which again, the NHS isn't particularly happy about and they'd rather me be on a lower one. I then take my progester as a sort of 12-day cycle, so I still have a bleed. And I was on the otogestin, which is the body identical one, but for shortages now, back on the synthetic one for a while. And I'm also on testosterone. So it's a gel and I put half a pea-sized blob on every day. And do you think the testosterone has made much difference to you at all? A hundred percent. I literally felt it the day I started it. Like I had absolutely no doubt. So energy levels, just in general how it's like helped my body just grow stronger.

I don't have like massive muscles, but I was really, really, really skinny. And I was exercising quite a lot and not really feeling the benefits. I always liked exercising, so I still did it, but it absolutely did nothing. Well, now, since I'm on testosterone, I actually feel like I can feel stronger, and that's incredible for my joints as well. I have a lot less joint pain because I can exercise and actually it's doing something to my body, but also brain fog. So and energy levels, it's been incredible. If one day I forget to take it, then I know immediately that I've forgotten to take it because my brain's less functioning really. I just forget things and I'm just a lot slower.

Which is so important. So there's a couple of things I'd really like to explore if you don't mind. One of the things is you're saying you're on 200 micrograms of Everell or Estergen patches. So the patches we use to apply to the skin to allow the estrogen, the body identical, the natural hormone to go through the skin into the bloodstream. And when we talk about maximum doses of drugs, often what the drug company have defined due to the way that they've done the trials and got the drug licensed. Actually, in the British National Formula, the BNF that we work out of doctors, it says that

we titrate the dose according to symptoms and they don't define a maximum dose. The SPC, so the product characteristics with the drug company, will say the maximum is 100 micrograms when it comes to patches. But that's not based on risk, it's just based that they haven't done the studies. In other countries, they don't have the maximum in the same way. So prescribing a higher dose is off-label use, but it's not off-license use. And sometimes with painkillers will give higher doses, sometimes with other hormones such as thyroxin, there isn't a maximum dose on the SPC. So I've had some patients who are on 225 micrograms of thyroxin, others who are on 25 micrograms, and everyone's different. But when we apply things on medication on the skin, our skin types are very different.

And so we know from other studies looking at all sorts of drugs through the skin is that the absorption can be very unreliable and unpredictable. It could depend on the thickness of the skin, the temperature of the skin, the vasculature of the skin, but also the adhesive that's used. So some people find that the patches don't stick on very well. And I use more than one patch, but they just don't stick very well. They crinkle a bit. So having more than one just means that I'll just get a bit more absorbed. but it's probably not as much as one patch in another person's skin that sticks really well. So there's lots of this going on, but at the same time, we've recently, as you know,

there's been a news alert from the British Menopal Society, the Royal College of Obstetrics and Gynaecology, the Royal College of GPs, the Royal College of Nursing, saying that we shouldn't be prescribing more than 100 micrograms. And if people do, then they have to take it at their own risk and have the responsibility as a prescriber. Well, a lot of people are scared of of HRT anyway due to unfounded fears. So this is making them really scared. And there is evidence, and it is mentioned in some of the guidelines as well, the Eschery guidelines for POI, that younger women often or might need higher doses. So you're saying you can't get a higher dose on the NHS. So it just doesn't seem right. I don't really understand what the concern is. What have you been told that are the

concerns of having 200 micrograms? So I've been told there's just no evidence that that will be safe on long term, which is, you know, the same as there's no evidence that I'll be fine on a smaller dose, you know, and the thing is I know that I'm not well if I'm on a much lower dose. So when I switched from the pill to HRT, I was put on a 50 microgram patch for quite a while and I was really, really unwell. I was feeling better mentally, but physically I actually had all sorts of symptoms, like really, I really struggled. So anything from headaches, like feeling you know, completely not able to function because I was so tired, but also a lot of sort of intestinal problems. I always had IBS and when my estrogen is very, very low, I literally

don't keep anything down. So I was losing a lot of weight. I had been referred to all sorts of specialists to check that my, you know, I didn't have some sort of cancer in my digestive system somewhere. So, you know, obviously this costed a lot of money to the NHS as well. It obviously worried everyone because I couldn't keep any food down. But then as soon as my issue didn't was up, like this completely disappeared. And again, they couldn't find anything else. And I knew it as we kept sort of increasing it every three to four months finally getting up to a higher dose that I was feeling better. But on 100 dose, I still was not feeling good. And I think everyone just needs a different dose and they will know within their body if they're well or not.

And I still have lots of symptoms on the 200 one, to be honest. So I think until probably you feel good, you can probably still up the dose. I'm not sure. What would you say? Yeah. Well, the thing is about estrogen is it's very anti-inflammatory and the body is very beneficial. And often when people are on HRT, we do do blood tests to see if the estrogen's being

absorbed. If the level is low and a woman is on a certain dose, then we do. do often increase. There are some women that still have high levels, but they actually still feel better when they increase, but then you repeat the level and it can be low again. And so if you do blood tests in the perimenopause, hormones can fluctuate, so they can be very high and they can be very low. So sometimes a high reading is just because you've taken it at time when the hormone is sort of fluctuated up. The other thing is there is some cross-reactivity with the hormone blood test. So if some people have certain supplements such as biotin, it can cross-react with the blood test. So you get a

falsely high reading. In medicine, I've been always taught and I always practice in that we have to look at the patient first and the blood tests or the scans or whatever can help us with the diagnosis. But we can't just be looking at the blood tests the whole time. And this is, I think, very important when it comes to hormone levels because everyone's different. And what you need is a 27-year-old of estrogen in your body is bound to be different to me, who's, you know, nearly twice your age. I probably don't need as much in my body. And when I'm another 20 years older, I probably won't need as much as I have now. But we're very clear with the guidelines that every year people need to be reviewed and assessed, looking at the benefits and the risks. Now, the theoretical risks of estrogen,

if you have too much, is people worry about the lining of the womb. So in the old days, decades ago, people prescribed estrogen on its own. They didn't think about progesterone. And then they've noticed that more women were having bleeding. Some of those women had endometrial cancer. But actually, when you actually look at the studies, the risk of endometrial cancer for women who only have estrogen is still very, very low. If you have progesterone as well, then you're protecting the lining of the womb and you're reducing that risk. Now, with risk, you can never say never. So you cannot say people who take HRT are never going to have endometrial cancer in the same way that saying people who take HRT are never going to fall down the stairs and trip over. You know,

it doesn't protect us from everything. Of course it doesn't. Because there's a background risk of endometrial cancer. We know the commonest reasons or risk factors for endometrial cancer are being overweight, having type two diabetes, being hypertensive. So nothing to do with HRT. We do know that women who take HRT, especially when the progesterone's continuous, are less likely to develop endometrial cancer. They are more likely to develop bleeding, but bleeding doesn't usually mean endometrial cancer. So there's lots of reasons why people bleed, and clearly you're taking the progesterone for 12 days a month in a cyclical way, so you are going to have bleeding, which is absolutely normal because you're shredding the lining of your womb. A 27-year-old, very slim, very healthy

lady, the risk of endometeatial cancer is incredibly low, even if you take 100 or 200 micrograms of estrogen because you're replacing whether you're actually giving yourself what you need. You know, your body or others who are 27 with normal periods probably are producing more estrogen than you're having. But what's happened with this news alert and everything else, people have put all women together in a box and saying, no, we shouldn't be giving more than 100 micrograms. They're not thinking of this individualisation. They're not thinking of certain groups of women that really benefit from higher doses. And it really worries me because women shouldn't be paying for their HRT, especially as we've got free prescriptions now, or not free, but you know,

you just pay for one, don't you, for the whole HRT? But actually, that's not, you're not allowing to have your hormones back. I'm not aware of any studies showing that higher doses of antidepressants have long-term benefits or don't have risks. Those studies haven't been done in the same ways that long-term higher-dose estrogen studies have never been done. But people don't seem to worry about that. And I feel it's a real disservice to women just saying, no, you can't have it. The other thing, as you might know, we've produced,

and it's available on the Newtonhouse.com.uk website is some audit data that we've done as service evaluation, looking at our eustodial dosing, looking at our levels, looking at patterns of bleeding. And we've actually found there's no correlation, even between doses and levels in the body, because some people absorb very well. So some people on lower doses have a higher level of estrogen in their body

than others who are on a higher dose because they're just not absorbing as much. Which makes sense, as bearing in mind what I said about skin type and absorption and everything else, but common sense and menopause just don't seem to be united at the minute. It seems to be very fragmented. very polarised with poor women in the middle, not knowing who to believe, what to do. Do I trust that clinic who are giving me higher doses? Do I trust the Royal Colleges that are saying we can't have more? Or do I trust my body that's telling me that I don't feel right?

And that's really hard, isn't it, for individuals, I think? It's really difficult. And I think most people would just, you know, feel really, really scared to risk anything, you know, actively decide that, yes, I'm going to try and risk something. if a doctor has said, look, this is not proven, this is not sure. Because obviously we've got already so many other health issues coming from other sides. You don't want to risk anything else. But obviously if you understand what this means and the reason for this risk being just, well, we don't actually know if there is one, then yeah, that would help.

Yes, absolutely. And I think with risk, it's very difficult because as an individual you want to know about you. You don't want to know the percentage risk or a one in whatever risk. I want to know for me the risks, but the other thing, I always think about what are the risks of not having HRT or not having the right dose of HRT? We know if you don't have enough and you have low estrogen, then you get this pro-inflammatory state in the body, which means that our immune system doesn't work very well. There's an increased risk of infections, of course. But more importantly, there's an increased risk of inflammatory diseases.

And we know that because the longer a woman is without her hormones, the greater the risk that the woman is of heart disease. disease, osteoporosis, diabetes, dementia, mental health issues, work by Walter Rocker from the Mayo Institute shows that other diseases such as chronic kidney disease, psychosis, drug addiction, autoimmune diseases, some types of cancer can all increase the longer a woman is without hormones, and that sounds horrendous, and I'm saying all that when you're young, but that's why it's so important to have your hormones back, because if you have your hormones back, then that risk it really does reduce. And the less time you have without your hormones, the better. So this long time for diagnosis is exposing women to an increased risk. And we don't know how quickly it reverses or not.

So it is a real priority that young women who have an early menopause are really listened to and given treatment and the right dose and type for them as soon as possible, isn't it? Yeah, 100%. And it's about making sure that yeah I guess medical professionals are really listening to them especially as a young I was a child I definitely was not listened to and definitely you know my mom also wasn't listened to and so there's a lot to say and you know possibly listening to the person whose body we're sort of disgusting and yeah but you know if you're not feeling great because you're going through POI or the menopause then you probably are doubting yourself a lot as well so maybe you're asserting yourself at the appointment.

Absolutely. Yeah. So really important. So just before we finish, you do quite a lot to work with the charity Daisy Network, don't you? Can you just explain briefly what the Daisy is? Yeah, definitely. So the Daisy Network is a charity working with women with POI,

which is, yeah, premature menopause. So it's a community, essentially. So there's a lot of information and a lot of support for anyone that has been going through POI. So we do local meetups. So sometimes we meet, you know, in parks, do some walks. I meet the ladies in London, but there's lots of different networks around the UK and internationally. And there's also support groups online and just a lot

of information. So yeah, do join the Daisy network. Yeah, if that's helpful. Really, really helpful for me for sure. Yeah, brilliant. I think just, just, it's like anything, a problem shared is a problem halved and just sharing with like-minded people who understand who can talk, share experiences because I've learned a huge amount over the last seven years running a menopause clinic. I learn from my patients. I learn from the women. I learn from stories. I learn from seeing people get better as well. But actually we learn from each other as well and we can be advocates for each other, which I think is really important when we're patients. So before we finish, I'm very grateful for your time. I'd just like three take-home tips. But so for three tips,

for people who have been listening who either think they might have an early menopause or perimenopause themselves or they might be recognizing it in others from our conversation, what? what three things do you think they should do as a priority to help them and their future health? Yes, the first one, definitely listen to your body and yourself. Maybe keep track of your symptoms if they're changing. Like balance, for example, is amazing at doing that, allowing you to really track your symptoms, but you can literally just journal, whatever works. Just to make sure that when you go to your appointment,

you can actually show evidence of how you've been feeling and don't doubt yourself at an appointment. So really go to the appointment and prepare and ask for what. what you want, which is unfortunate that you have to do your own research and sometimes ask for things yourself. And the second one, do find a POI specialist if you are diagnosed with POI because actually they can prescribe you things like testosterone, for example, a lot more easily than GPs, at least in my experience, and they should be able to help with slightly higher. And this as well, we'll see if that can still happen on the NHS at some point. That'd be really good.

And then the last one I would say, yeah, definitely find your community and tribe. I felt so much more myself when I was able to share my story with other people and hear their stories. And I've made amazing friends. And sometimes knowing people who are going through the same thing that you're going through is the most healing thing that can happen to you. Absolutely. So very empowering, very positive. I really hope people now will look at the menopause as a problem for half the population, not a problem for older women, which is really important.

So I'm very grateful for you sharing your story and look forward to hearing more about what the Daisy Network can do and what we can all do together to help young women. So thanks ever so much today, Karina. Thank you, Louise. Thanks for the work you do. For more information about the perimenopause and menopause, please visit my website, balance-manopause.com,

or you can download the free balance app, which is available to download from the app store or from Google Play.