‘How I manage menopause with diabetes’

Joining Dr Louise on this week’s episode is Victoria Faulkner, who was diagnosed with type one diabetes in childhood. Victoria talks about day to day life managing menopause and diabetes, as well as her experiences of a surgical menopause due to treatment for endometriosis.

Finally she shares the three things she thinks women with type one diabetes should know about hormonal health, and what has helped her personally:

1. Familiarise yourself with the NICE guidelines on diabetes and see what you can access to monitor your diabetes
2. Use a body map to track your symptoms ahead of any appointments you have to help discussions on any symptoms you might be experiencing
3. Ask your healthcare professional for a continuous glucose monitor to help monitor your blood sugars and spot any patterns, and if possible, push for a sensor augmented pump system to monitor any highs or lows.

For more information on Newson Health, click here.

Dr Louise Newson’s first-ever live theatre tour, Hormones and Menopause – The Great Debate, runs until 12 November. For more information and tickets, click here.

Transcript

Dr Louise Newson: [00:00:11] Hello. I’m Dr. Louise Newson. I’m a GP and menopause specialist, and I’m also the founder of the Newson Health Menopause and Wellbeing Centre here in Stratford-upon-Avon. I’m also the founder of the free balance app. Each week on my podcast, join me and my special guests where we discuss all things perimenopause and menopause. We talk about the latest research bust myths on menopause symptoms and treatments and often share moving and always inspirational personal stories. This podcast is brought to you by the Newson Health Group, which has clinics across the UK dedicated to providing individualised perimenopause and menopause care for all women. So on my podcast today, I’m very delighted to introduce to you Victoria, who has kindly agreed to come onto the podcast and share her experience of having diabetes and endometriosis and how menopause has affected her. So welcome, Victoria. [00:01:18][67.0]

Victoria Faulkner: [00:01:19] Hi, Thank you very much for having me. It’s lovely to be on here and speak to everyone. [00:01:22][3.3]

Dr Louise Newson: [00:01:23] So tell me this about you and your medical history, if that’s okay. [00:01:26][3.6]

Victoria Faulkner: [00:01:27] Yeah. So I was diagnosed with diabetes at age five. So that was back in 1994. Then I was diagnosed with coeliac disease aged 11. That was diagnosed because I’d stopped growing. And after that kind of in my teenage years, I had a lot of unwellness. I was told that it was possibly down to chronic fatigue, ME, lupus. I had very bad headaches, really kind of lots of issues that were always, ‘oh because you’re diabetic, it must be that you’re going to have juvenile arthritis’. Or we’d go to the children’s hospital in Leeds and these would be like, we’ll put you in this clinic. But actually, looking back, it was all around my teenage years, and most of the symptoms that I had then have now come up again. And now I’m in a surgical menopause, it probably was a lot of it hormonal. I mean, I was prescribed beta blockers for headaches. I was prescribed propranolol. I was prescribed diclofenic, all of these things that when I’ve listened to your podcast and I’ve heard you say, oh these are used as other treatments for kind of menopausal symptoms, like, oh but I was given that. No one ever said, ‘Could this be hormonal?’ [00:02:45][77.3]

Dr Louise Newson: [00:02:46] It’s interesting, isn’t it, because often we don’t think about hormones enough and often we think about them. If we do think about them, it’s usually when people are menopausal or maybe perimenopausal. And we forget sometimes about younger people. And it’s interesting because you’ve got type one diabetes, haven’t you, which means that you need insulin and coeliac disease, which is a gluten sensitivity thought to be an autoimmune disease. So it’s sometimes people have got an increased incidence of other autoimmune diseases. So you can see why people were thinking about arthritis or other conditions. But increasingly we know autoimmune diseases can be related to hormones because autoimmune diseases are far more common in women. And guess what? Far more common in women in their 40s, which is when hormone levels change and our hormones, oestrogen and progesterone and testosterone are very anti-inflammatory in our bodies as well. So it’s probably connected. But no one joined the dots, did they? [00:03:46][60.2]

Victoria Faulkner: [00:03:47] No, no. And it definitely was that way. I mean I was having the tests kind of every six months to check my levels and then when I read your book say, well that makes it sense why I had that. Because the costs so levels are linked to your hormones and that’s why it was always the results were never they were never happy with the results because they were always changing. It’s just all of those kind of dots. And now like, oh this makes sense, this makes sense. So then I kind of moved on from there to later in life where I then went in for what they thought was appendicitis. Obviously being diabetic you’re more likely to have appendicitis is what they said. Oh it’s because you’ll pick up infections easily, which then turned out when they went into remove my appendix to be quite extreme endometriosis so that was when I was 21. [00:04:46][59.2]

Dr Louise Newson: [00:04:47] Gosh. And was that the first time that you had been told that you had endometriosis when you were 21? [00:04:52][5.5]

Victoria Faulkner: [00:04:54] Yep that was the first time. So I’ve been back and forth to the doctors many years and just been told, oh women suffer with their periods, other women don’t come and complain. You just have to get used to it. And as a teenager that was the constant message. You just have to get used to it. Other people aren’t coming to see me all the time. And then I was put on the pill quite young, which obviously did help. But there is still the issue’s still ongoing, it’s not a solution. And then after that, it was the ‘oh, if you get pregnant, then that will make your endometriosis go away’, which we now know isn’t true. So yeah, it was kind of and I think where I lived at the time it was in Yorkshire, so I wasn’t able to access as good healthcare as I probably can now living in Birmingham. [00:05:47][53.0]

Dr Louise Newson: [00:05:49] So a very difficult time. Lots going on. And then if we just start with your type one diabetes, obviously you started having insulin when you were young. You were only five, and your hormones would have been very different then. Of course, you wouldn’t have had the same hormones as you have when you were a teenager or older. But did you notice any change in your need for insulin throughout your menstrual cycle at all? [00:06:13][24.1]

Victoria Faulkner: [00:06:14] Yes. So that’s always been an issue, and with my other friends who are also diabetic and women. We’ve always said this is what we notice that kind of in the run up to your period that you’ll need lots more during, you can need much less and a lower basal rate. And that was it. So then when I kind of had had my children and became what I now know was perimenopausal, I was just being told by the doctors, ‘oh don’t worry, it’s just your ovaries. Your ovaries are failing, but you going to have a hysterectomy, so it’s fine’. I had five different basal rate programmes that I was running. It was constantly all over the place. I could be sky high one day and then it would be low the next day. And it was. I couldn’t see a pattern in anything. I remember going to my diabetes nurse and saying, ‘What’s going on?’ And she doesn’t know either. But looking back at it was just because my hormones were so up and down at that stage, it does have such an impact and no one sits down and says to you when you go for a diabetes appointment, ‘oh well, this is going to happen during your period’. When we’re pregnant, we get almost weekly or two weekly appointments to help you manage your diabetes through pregnancy. There’s nothing to help you manage your diabetes through either menopause or through just your menstrual cycle. [00:07:43][88.9]

Dr Louise Newson: [00:07:44] It’s very interesting, isn’t it? So as you might know, I did quite a lot of hospital medicine before I went into general practice, and I did do a diabetes and endocrinology job. But this was many years ago. I’m quite old so it was in the 90s and HbA1c see had only recently come on. So we were really doing, people had little books where they would write in their blood glucose from their pinprick test and it would really vary. Some people you knew would made up the results before they came to the clinic. So you couldn’t really get a good picture of where they were changing throughout the days and everything else as well. And then HbA1c came in, which some of you might know is like almost your average sugar level over six weeks, which is fine. But then if you’ve had two periods or one period in that six weeks, it would only give you an average. So it’s not really showing the real representation of how sugar levels vary. But now we’ve do a lot more of continuous glucose monitoring, don’t we, the CGM. So you you can be a lot more reactive with the dose of insulin, which is so much better because our sugar levels, when we haven’t got diabetes, change all the time, they change depending on obviously what we’re eating, but also what exercise we’re doing, whether we’re stressed what our sleep’s like, what our mental health is like, all sorts of things will change our sugar requirement and our need for different amounts of insulin. So it’s really good that people with diabetes can monitor so much more closely and be more reactive. But I think that’s probably unmasking a lot more of these changes that occur with menstrual cycle. I don’t know what you think, Victoria? [00:09:21][97.5]

Victoria Faulkner: [00:09:22] Yeah, I definitely agree. And even when you’ve got things like Dexcom that then send you your data, you can look at the data and you can see kind of weekly what’s happening, where it’s happening. It will send you data patterns. It’s just completely different now. The technology in diabetes and seeing how these patterns are occurring and where these patterns are occurring. And that’s invaluable because then if I’d known that actually every time it was high, it was because it was due to say, progesterone, we could have pinpointed that and put in more oestrogen and that would have been, would that have improved things in the run up to surgery for me? Well, definitely. [00:10:03][40.6]

Dr Louise Newson: [00:10:04] Yeah, it’s very interesting. I’m very interested in the cardiometabolic problems with menopause. And we know when people have low hormones, it increases their risk of type two diabetes, changes metabolism, changes the way our pancreas works as well. And the way that our body changes really, to having sugar as well. You know, lots of people have sugar cravings. They don’t metabolise carbohydrate and food in the same way as well. But no one really then looks back at younger women. And we know that before periods is where hormone levels decline of oestradiol and progesterone, as you say as well, and progesterone is a precursor for testosterone and oestradiol and progesterone is really important for metabolism as well and the way sugars get broken down and insulin requirements, and all our hormones work very closely together. But it’s almost been siloed. A lot of endocrinologists don’t really learn much about the three hormones, oestradiol, progesterone, testosterone. So it can be very difficult for women to understand what’s happening and how their interim requirements change. And I’m not really aware of any good quality research that’s going on in this area either. [00:11:17][72.3]

Victoria Faulkner: [00:11:18] No, I totally agree, because after my hysterectomy, I had a bilateral oophrectomy. So both my ovaries removed and I remember saying to my diabetes nurse, who is wonderful, ‘but, well, what will each hormone do?’ And it was kind of like, well, we don’t really know. And this was three years ago. So we do know a lot more now. And obviously with your research, and you pushing it fowards, you’re sharing what you know a lot more as we don’t know. So I’ve had to learn that actually oestrogen makes my blood sugar go low. So if I’m increasing my oestrogen it goes low. If I’m exercising and it’s in the heat, my patches will release more oestrogen. As they warm up, my skin dilates the blood vessels so I absorb more oestrogen, which then will give me significant lows overnight, which on top of an exercise low overnight is not really ideal. But I know it’s going to happen so I can manage it. Then I found out with progesterone that when I take the progesterone it does cause a little bit of resistance for me. But it’s not that bad. It’s not, it doesn’t make a huge impact. But if I eat with the progesterone, which you’re obviously not meant to eat for the two hours, sometimes I do need to eat with it and you can eat with it. It just makes it metabolise a bit faster. I find if I eat with it then for some reason the next morning it will give me lows. I don’t know why it does that, but that’s what happens to my body. And then finally it was the testosterone to put in. And for me, the testosterone’s been the one that I notice the most and my blood sugar levels. So I’ve tried androfeme because I’m very lucky and and I see Dr Coward, who works in your clinic, the androfeme’s great, it’s nice and even, it’s quite slow release. So putting on the androfeme, I don’t notice too much. But when I swap to try testogel, testavan, I find that it gives a really high blood glucose spike almost instantly, which then my pump will correct because I’m very lucky I use a sensor augmented pump so the pump will correct, but that then gives me a low because it doesn’t seem to be a proper high, if that makes sense? It’s not kind of a high from food. So it’s then putting the insulin in for me and it’s the insulin then seems not to have anything to absorb which sounds really weird when I’m explaining it… [00:13:51][153.6]

Dr Louise Newson: [00:13:52] Yeah that’s really interesting. No it is very interesting because we know that using our hormones, oestrogen, progesterone, testosterone, body identical hormones are best because they’re metabolically the same as our hormones. But when we give oestrogen, the oestradiol, and testosterone through the skin, the rate of absorption that you say can really vary and it can vary between temperature of the skin, like you say, skin type, the way you absorb the way it’s metabolised and different preparations, even though they’ve got the same dose, can get absorbed at different rates. And that’s where it’s really difficult to predict how quickly they’ll get absorbed as well and how much will get absorbed in the first ten minutes or in the first ten hours. Like we just don’t know. And what we measure, even when we do blood tests, it’s not so much what’s in the blood, it’s what’s in your system and especially in your, you know, everywhere else in your system that’s affecting your metabolism and your requirement for insulin. And it’s very interesting because you’re probably absorbing one a lot quicker than the other, and that’s why you’re getting these changes. But again, we haven’t looked at it. No one’s done proper research, but we know that certainly men with low testosterone have an increased risk of type two diabetes. And so it is going to change metabolism when you haven’t got hormones, but when you give them back, you know, wouldn’t it be great if we had a slow release testosterone that you could give rather than something that gets absorbed more? And like you say, maybe the cream gets absorbed in a more slower way than the gel, but it still varies so much between different women. [00:15:33][101.2]

Victoria Faulkner: [00:15:34] Yeah. And I find that if I put the gel on in the morning, it makes my blood sugar, well on the graph, look quite spiky in the day. Whereas if I put it on an evening, I don’t get those spikes during the day as much. So for me, pushing on the androfeme on an evening works better and having the technology to be able to access that is really useful because I, if I wasn’t accessing it and seeing, oh it’s quite spiky today, why am I going up and down? Then I wouldn’t be able to make these little changes to my hormones and tweaking my hormones as I do to make me feel the best I can. [00:16:13][39.3]

Dr Louise Newson: [00:16:15] Which is really important. And it’s easier in some ways because you’re using hormones like HRT and testosterone. You know that’s affecting your sugar level because you can see and you’ve got the confidence and understanding. But if you were perimenopausal, so if you were a woman in your 30s or 40 starting to become perimenopausal, you’ve got type one diabetes. You wouldn’t know that it was related to your hormones oestradiol, testosterone and progesterone changing. And I think back to when I was doing a diabetes clinic, you’d always been quizzing people about what have you eaten, what have you drank, what exercise have you done? Have you not slept properly? Are you more stressed? I never even asked about ‘Could it be related to hormones? Does it change before your periods? Could it be a pattern?’, And because for so long we’ve only talked about perimenopause and menopause as flushes and sweats. If people are coming into a clinic, a diabetes clinic and they’re saying they’ve got low mood and anxiety and joint pains and memory problems and headaches, a lot of people are not going to join the dots and think, could it be related to her hormones changing and declining? And in the perimenopause, hormones can be really chaotic. So that’s going to play havoc for people with type one diabetes, isn’t it? [00:17:32][77.9]

Victoria Faulkner: [00:17:33] Yeah. So it’s really hard work. I remember before my surgery, I was perimenopausal, I didn’t know I was perimenopausal, and I was having things like the health palpitations, I was having lots of stomach issues. I was having lots of different things and being referred to lots of different clinics because I was in the lucky place that because I was in the diabetes clinic, they say, oh we’ll put you in for a referral here. We’ll put you into a referral there. So I was lucky that I was being seen for all these things, but then it was actually realistically I wasn’t being seen for all these things because all I needed was to have the HRT and now I don’t have any of those problems. I was under the asthma clinic because my asthma was really bad, I’m still under the asthma clinic, but actually now it’s really well-controlled because I’ve got my hormones back and they’ve said the hormones do affect your asthma. I was in the eye clinic because my eyes were so dry, I ended up causing a tear on the cornea of my eye because my eyes had got so dry. So I was in the eye clinic for that. My eyes still get dry, but nowhere near the fact that they’re tearing and the flap of skin is coming off it, which is quite frightening when it happens. But I was lucky. I was under the eye clinic. I was then having my stomach issues looked at, I had a 24-hour PH test, which was really quite hard. They were saying, ‘oh it must be because of your coeliac that you’re having stomach issues. You’re not having a gluten free diet, you’re not adhering to it’. So I was having biopsies to check for that. And all of it, I honestly believe, was because of my hormones. All I needed was to be given the hormones instead of me going to the GP and saying, I’ve got these issues and the GP saying, ‘oh well, you’re having a hysterectomy soon, so there’s no point us doing anything’. I said, Please can I have my hormone levels done? And they would say, ‘No, you’re having a hysterectomy. You’re too young’. So it was really quite difficult that those dots aren’t joined up. And it would be lovely if you could go to a diabetes clinic and have them ask you as a woman about all of those things and say, ‘Can we join these dots for you?’ And it wouldn’t even need to say menopause symptom checker. It could just be a hormone symptom checker. [00:20:00][147.1]

Dr Louise Newson: [00:20:02] Absolutely. It’s so important because we’re developing a new symptom questionnaire, actually, which is going to be a hormone symptom questionnaire because there are so many different symptoms. And if you don’t know they can be related to hormones, you’re not going to ask the right questions. And a lot of the time. You know, in medicine we learn from our patients, but also we make the diagnosis from patients, but only when patients have the right information as well. So it’s doing it together. So the more women understand that hormonal changes can affect their diabetes, the more information we’ll be able to get and to join the dots and to reduce some of this suffering, because it’s very easy. And I see it a lot when people have got a long-term condition like type one diabetes, it’s really easy to blame the diabetes for every single symptom. But as a patient, you quite rightly know that your tear in your cornea or your joint pain or your breathing problems are not due to your diabetes because you know your diabetes really well. But you also know that there must be some connection too. And that’s where it’s really important in medicine. If we don’t know the full answer, we have to work with patients and think in a really holistic way. And sadly, so much in medicine has become very siloed. So you’re only thinking about one organ at a time, and that’s where diabetes is interesting because it affects, as you know, every organ under the sun. And it was in the sort of early 1990s they started to talk about, diabetes. If it’s not well controlled, increased risk of heart disease and kidney disease and eye diseases and really important to control diabetes, which is absolutely right. But now moving forwards 30 years, we have to think about menopause as a marker of future illness as well, because we know that the diseases associated with menopause are similar to the diseases associated to poorly controlled diabetes. So heart disease, kidney disease and so forth. But we have to be looking at all our hormones together. And that’s what’s not really happening, is it? [00:22:15][133.4]

Victoria Faulkner: [00:22:16] Yeah, it’s definitely like that. And it’s really hard to be heard, I think, when you’re saying, this is wrong with me when you already have a long term health condition because it’s all put down to that. So even things like vaginal atrophy, they’ll say, well, obviously it’s going to be thrush, you’re diabetic, you’re going to get thrush. It must be that. There was no discussions or no thoughts of using local oestrogen. It’s only when I’ve seen Dr Coward in your clinic that that’s been approached. It’s really shocking how little thought there is to menopause in younger women. [00:22:58][42.2]

Dr Louise Newson: [00:23:00] Definitely. And I, I know that well we know that so many women about one in 30 under the age of 40 will have an earlier menopause and actually more common in people that have chronic diseases. And I don’t know the data just because I don’t think it’s been done, but people with type one diabetes are probably more likely to have an earlier menopause at a younger age. Obviously, you had a surgical menopause because you had an operation to remove your ovaries. But even if you didn’t have endometriosis and you still had your ovaries, they might have failed at an earlier time. And it’s something that people who work in clinics for people with diabetes should know to be more alert to. And also, if we know, like you say, if you balance your hormones, your diabetes control will probably be more straightforward as well. [00:23:48][48.3]

Victoria Faulkner: [00:23:49] Definitely. And I think having diabetes has really helped me with my hormones because I know how to treat my insulin. I know when my insulin needs to go up and down. If I’m ill, I know that I need my sick day rules. And I found the same thing happens for my hormones. So if I’m ill, I don’t absorb my oestrogen…so I know that actually putting on more patches of oestrogen and increasing my oestrogen following what the doctor said obviously, it helps me to feel better because I’m absorbing it. Also I can see on my blood sugars if I’ve had a couple of days where they’ve been quite high, like, oh not enough oestrogen. And if I’ve had a few days where it’s been quite warm and I’ve been absorbing more oestrogen, it’s going around my body a bit better and I just to reduce it because I’ve had too many lows and it’s noticing that actually tweaking my hormones holistically as my oestrogen and my insulin, because they really they work together really quite well to help control my diabetes and to keep me with that nice flat line that we want to look for on our CGMs, it’s impossible to achieve, but we want to look for it. [00:25:02][73.1]

Dr Louise Newson: [00:25:03] Absolutely. And it is really interesting, isn’t it? Because when we prescribe HRT, we usually prescribe the same dose every single day for women. And it can be very difficult in the perimenopause because the, women are producing their own hormones as well. But actually in real life, we don’t produce the same amount of oestrogen and progesterone and testosterone every minute of every day. We do really change. And the more people can understand how the hormones affect us, the more sometimes we can change the dose. And so, for example, women with PMS or PMDD, we often only give them hormones for the few days that they’re experiencing symptoms because the other days their body will be producing enough hormones. And the more we’re flexible with HRT, the better it often can be for individuals. But sometimes people get quite worried about it and saying, but you’re giving too high a dose or too low a dose or not the right. But I think you’ve really clearly illustrated how important it is because the changing dose can affect other hormones. And that’s really important when we think about why we give hormones. It’s not just for symptoms, it’s to improve future health. And if you were constantly running on a low oestrogen, your diabetes control would be worse, which would, as you know, give you worse outcomes. But even if you weren’t diabetic, that’s one of the reasons why people will have worse outcomes because they will not be having the same sugar control without oestrogen. But you’re just a walking example because you’re monitoring all the time, which us without diabetes aren’t able to monitor our sugar in the same way. [00:26:40][97.0]

Victoria Faulkner: [00:26:40] Yeah. And I think I’m more used to feeling what my body’s doing with diabetes and being as a diabetic, you’re taught to be in tune with your body and listen to your body. So I know that if I’m not feeling great. Is it because I blood sugar’s high or is it because actually I need a bit more oestrogen today, have I got a headache for this reason? Am I ill? No. And if it keeps going I’m like oh, I need some more oestrogen actually, it’s because I’m not absorbing as well. And that’s… I think that’s a hard thing to, because a lot of people, as you say, is stuck on that single dose and can’t monitor it. And even if you are listening to your body, there’s nothing to help you back it up, whereas as a diabetic, I find that I can see it on my blood sugar levels and it really helps me to see when or where I need to adjust my doses. [00:27:34][53.5]

Dr Louise Newson: [00:27:35] Yeah, it’s so important and I just wish that there would be some research in this area. But having joined up thinking because that would really improve day to day life, but also future house for women with diabetes as well. So I really hope we can move this conversation forward. So I’m really grateful because you’ve shared a lot and I think it will make people think about our hormones in different ways, which is really important. So just before we finish, though, Victoria, could you just give us three tips? And I’d like to hear three things that you think more people with diabetes should know about when it comes to hormonal health. [00:28:12][37.0]

Victoria Faulkner: [00:28:13] So my first one would be to read the NICE guidelines and see what you can access. These are available online so everyone with diabetes can now access continuous glucose monitoring, if you’ve got type one. So there’s the Dexcom, the FreeStyle Libre and there’s other brands as well available that will really help you be able to see where your hormones are. Next one, I would say use a body map to track your symptoms for the appointments. I used to draw kind of the outline of a gingerbread man when I was going to see Dr coward, I’d start at the head, I’d work down and write everything down that I thought was wrong with me. And now when I go and see her, my gingerbread man doesn’t have much wrong with it. But well, I should say her. But…so number three would be to ask for the continuous glucose monitor to help monitor your blood sugars and spot the patterns. But then on top of that, after reading the NICE guidelines, see if you can push to get a sensor-augmented pump, which is an artificial pancreas system which will then help to monitor your highs, monitor your lows, and for me, I’ve used one for the last four years. That’s just been a complete game changer in my diabetes care and really does help on those days where my hormones are not doing what they should be. [00:29:34][81.0]

Dr Louise Newson: [00:29:36] Great advice and lots of things to think about and certainly hope we can change things going forwards for more people living with diabetes. So thank you so much for your time today, Victoria. It’s been really interesting. [00:29:47][11.6]

Victoria Faulkner: [00:29:48] No, thank you very much. [00:29:49][1.0]

Dr Louise Newson: [00:29:54] You can find out more about Newson Health Group by visiting www.newsonhealth.co.ukdot and you can download the free balance up on the App Store or Google Play. [00:29:54][0.0]

ENDS